Tracing women’s experience of breast cancer from risk awareness through detection, diagnosis, treatment and survivorship

Tracing women’s experience of breast cancer from risk awareness through detection, diagnosis, treatment and survivorship

By Terry Trussler, EdD February 2007

Toward Kinder Care: Tracing women’s experience of breast cancer from risk awareness through detection, diagnosis, treatment and survivorship By Terry Trussler, EdD Copyright 2007 ISBN 978-0-9782900-0-9 Design and production by: Pivot Design Group Inc. Printed by: Advanced Graphics For additional copies of this report, please contact: Canadian Breast Cancer Foundation – Ontario Chapter 20 Victoria Street, 6th Floor Toronto, ON M5C 2N8 Tel: 416-815-1313 x440 Toll-free: 1-866-373-6313 x440 Email: [email protected] Downloadable copies of the executive summary, recommendations and complete report are available online at www.cbcf.org/ontario and at www.upfrontproject.ca.

Tracing women’s experience of breast cancer from risk awareness through detection, diagnosis, treatment and survivorship

The Up Front Partnership: working together to make a difference

The Up Front partners gratefully acknowledge the support of the project funders:

Canadian Breast Cancer Foundation - Ontario Chapter Board of Directors, 2006-2007 Alison J. Youngman, Chair Jean Blacklock, Vice-Chair Dr. Shailendra Verma, Vice-Chair Patricia Smith, Past Chair Catherine Brayley Dr. Susan Done Deborah Dubenofsky Susan F. Goodman Carole Mayer Randi Rahamim Gary Shiff Christy Teasdale Mary Jane Thomson Lilian Tomovich Donna Van Alstine Barry Yontef Beverly Thomson, Honorary Chair Up Front: New Perspectives on Breast Cancer Project Steering Committee Sharon Wood, Executive Director, Canadian Breast Cancer Foundation - Ontario Chapter Beth Easton, Director of Allocations and Health Promotion, Canadian Breast Cancer Foundation - Ontario Chapter Patricia Smith, Board of Directors, Canadian Breast Cancer Foundation - Ontario Chapter Carolyn Jackson, volunteer, Canadian Breast Cancer Foundation - Ontario Chapter S. Elaine Brown, Willow Breast Cancer Support Canada Jackie Manthorne, Canadian Breast Cancer Network Bill Campbell, Ontario Breast Screening Program, Cancer Care Ontario Shannon Stuart, Princess Margaret Hospital Foundation Bette Johnston, Princess Margaret Hospital Foundation Breast Centre Women’s Committee

FOREWORD The following pages contain rich accounts of experiences of breast cancer care in Ontario from the perspective of those who know it best: former patients, their personal care providers and health care professionals. While this information is presented here as a final report reflecting the culmination of three years of research, the report is not the conclusion of our work, but rather the beginning of a new phase of action. This report provides guiding evidence for a coordinated effort to ensure that the breast care system can respond effectively to people’s needs across the entire spectrum of breast cancer care in a way that more fully treats the whole person, not just the disease. When we began this research initiative three years ago, we looked forward to being able to share its findings with Ontario’s breast cancer community — to engage people in the process of change required to improve future experiences of the entire continuum of breast health care. We were deeply moved by the openness and generosity of the individuals who shared their personal and professional experiences. Most of all, we were motivated by their desire to make a difference by being part of an initiative that will help others. This report is our promise to honour their contributions. Many people whose voices can be heard in this report talked about the need for a system that includes kinder care, responds to individual patient needs, allows patients to be equal partners in their treatment and care, acknowledges and accounts for the inequities some women experience in system access and quality of care, and addresses the unanticipated hidden costs of breast cancer. During the course of this project, it became clear that governments, policymakers, health care professionals, community organizations and advocates are beginning to share a vision of the opportunities to improve the current breast cancer care system, and the priority areas where these changes are most needed. Taking action to create change will require participation from all of these groups. Our challenge is to work together effectively to build a system of care that does not contribute to experiences of treatment stress, as revealed in the Up Front research findings, and to realize an enhanced vision of coordinated care that better supports patients’ needs. On behalf of the project partnership, the Canadian Breast Cancer Foundation – Ontario Chapter wishes to acknowledge the individuals and professionals who were willing to speak so candidly about their experiences. Many women who had experienced breast cancer indicated that their decision to participate in the research was a difficult one, as they were unsure if they would be able to share their stories. However, they were motivated by the desire to help people whose lives have been affected by breast cancer and those who will be diagnosed in the future. These stories now collectively form the evidence to guide strategies for informed changes to the breast cancer care system. We are honoured to receive the trust that women placed in us, and we are accountable to them to ensure that this research leads to tangible changes in breast cancer care. And finally, we would like to acknowledge with deep gratitude some key people without whom this work would not have been possible. First, the early work of our colleagues in the British Columbia/Yukon Chapter of the Foundation in a similar area served as an inspiration and catalyst for our own research to be developed. We appreciate their encouragement and guidance, and the opportunity to learn from their experience as we created our own path. Second, the Chapter’s Board of Directors gave their commitment and vision to this project, believing from the outset in its importance and recognizing that, through it, we would learn a tremendous amount as an organization and be better able to fulfill our mission by transforming recommendations to targeted actions for change. Lastly, we’re indebted to the remarkable contribution of the Chapter staff team, led by Beth Easton, Director of Allocations and Health Promotion, who navigated the uncharted territory of this work with dedication, patience, perseverance, compassion, a sense of humour and a commitment to excellence that has ensured we have arrived where we are today. Together, we have all changed as a result of this work. We have a renewed sense of purpose and recognize our collective responsibility to pursue changes that will realize a vision of kinder care, and a future without breast cancer.

Alison J. Youngman Chair, Board of Directors Canadian Breast Cancer Foundation - Ontario Chapter

Sharon Wood Executive Director Canadian Breast Cancer Foundation - Ontario Chapter

ACKNOWLEDGEMENTS FROM THE CANADIAN BREAST CANCER FOUNDATION - ONTARIO CHAPTER As is the case with initiatives that are spirited by hope and strive to bring about change, many people contributed their energy, ideas and hearts to this report, which represents the culmination of a threeyear research project partnership. The individuals acknowledged herein contributed in a range of ways to the project and this report, including in a volunteer capacity. The few words offered in recognition of them are only a small gesture compared to the immense gratitude that they are owed. PROJECT PARTNER REPRESENTATIVES (2003–2006) In 2003, the Ontario Chapter of the Canadian Breast Cancer Foundation invited a number of key breast cancer stakeholders to collaborate to improve breast cancer care in Ontario. Representatives of partner organizations served as members of the project’s steering committee. Throughout the project these individuals remained committed to a vision of the project as an instrument that could lead to new understandings and real change. They held fast to the belief that the needs of those affected by breast cancer must be better met, and to this end, they provided insightful input and guidance throughout each phase of the project. Patricia Smith, Canadian Breast Cancer Foundation - Ontario Chapter, Board of Directors Carolyn Jackson, Canadian Breast Cancer Foundation - Ontario Chapter, Board of Directors Elaine Brown, Willow Breast Cancer Support Canada Dallas Petroff, Willow Breast Cancer Support Canada Jackie Manthorne, Canadian Breast Cancer Network Bill Campbell, Ontario Breast Screening Program, Cancer Care Ontario Shannon Stuart, Princess Margaret Hospital Foundation Shannon Doherty, Princess Margaret Hospital Foundation Bette Johnston, Princess Margaret Hospital Foundation Breast Centre Women’s Committee

RESEARCH INQUIRY Leadership Terry Trussler, EdD Senior Scientific Advisor and Principal Investigator Dr. Trussler provided ongoing strategic guidance to the entire research project and acted as an advisor to all aspects of the project’s work. His role included providing guidance to the project’s steering committee and to Canadian Breast Cancer Foundation staff. He subsequently analyzed and synthesized all research data to write the project’s consultation report, entitled “Treatment Stress: Probing Women’s Experiences of Breast Cancer Care,” and this final report of the project in its entirety. The complex task of understanding and bringing into focus the dense and poignant picture that emerged from the project’s range of sub-studies about breast cancer and women’s experiences of breast cancer care rested in Dr. Trussler’s hands. He demonstrated unwavering rigor in his efforts to make coherent, accurate meaning of the data. His efforts to recount and analyze the stories women shared about their experiences of breast cancer reflected a deep sensitivity to the women and the stories they entrusted to the project. To his role, Dr. Trussler brought a keen sense of responsibility to help others understand what was learned through the project, along with modesty about what remains to be learned in this area of research. Overall, Dr. Trussler’s enthusiasm for the project, and his desire to learn and to understand better what was being learned, nurtured a spirit of investigation that invaluably enriched the project and its outcomes.

Studies

RESEARCH REPORT REVIEWERS

As noted, the Up Front research project included several sub-studies. Each was led by a different team or by an individual research consultant and each helped to refine and elaborate the overall inquiry. All of these contributors brought fresh insights and energy to the project and made unique and valuable additions to the project’s collective findings.

We are extremely grateful for the diligence and generosity of the following three astute reviewers, who read the full draft report and recommendations and provided detailed feedback. Each reviewed the report from unique and relevant vantage points and without fail offered critical insights and suggestions that served to significantly strengthen the report.

) literature survey Jennifer Polzer, research consultant ) focus groups and key informant interviews Tina Sahay, Health Promotion Consulting Group Fred Ashbury, Partners in Creative and Effective Program Solutions Inc. ) policy and program environmental scan Caryl Arundel, Caryl Arundel Associates ) public opinion survey John Pollard, Institute for Social Research, York University ) community consultations David Kraft, Strategic Communications John Willis, Strategic Communications Jennifer Dawson, research consultant

Deborah Dubenofsky Senior Consultant, The Capital Hill Group Director, CBCF - Ontario Chapter Board, and member, Communications Advisory Committee Carole Mayer Clinical Leader/Manager of Supportive Care, Supportive Care Oncology Research Unit & Sudbury Genetic Counseling Services Northeastern Ontario Regional Cancer Centre Director, CBCF - Ontario Chapter Board, and Chair, Community Development Advisory Committee Dr. Shailendra Verma Medical Oncologist, Ottawa Hospital Regional Cancer Centre Vice-Chair, CBCF - Ontario Chapter Board, and Chair, Research and Health Care Advisory Committee

TABLE OF CONTENTS EXECUTIVE SUMMARY . . . . . . . . 1 INTRODUCTION . . . . . . . . . . . 3 METHODOLOGY . . . . . . . . . . . 4 PREVENTION . . . . . . . . . . . . 8 In Context Research Literature Up Front Findings Policy Environment Strategic Challenges SCREENING . . . . . . . . . . . . . 11 In Context Research Literature Up Front Findings Policy Environment Strategic Challenges DIAGNOSIS . . . . . . . . . . . . In Context Research Literature Up Front Findings Policy Environment Strategic Challenges

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TREATMENT . . . . . . . . . . . . In Context Research Literature Up Front Findings Policy Environment Strategic Challenges

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CONTINUING CARE . . . . . . . . . In Context Research Literature Up Front Findings Policy Environment Strategic Challenges

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NEW PERSPECTIVES . . . . . . . . Participant Recommendations

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COMMUNITY CONSULTATION . . . . Process Results Improving Breast Cancer Care Discussion

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ACTIVATING UP FRONT: REPORT RECOMMENDATIONS . . . . Discussion Recommendations REFERENCES . . . . . . . . . . .

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EXECUTIVE SUMMARY A breast cancer diagnosis is an everyday reality for Ontario’s health care system, where it occurs more than 8,000 times a year. But former patients often remember their lives being shattered in the moment of their diagnosis. Many recall their subsequent experiences in treatment for breast cancer as exceedingly stressful events. To find out why and how to help, the Ontario Chapter of the Canadian Breast Cancer Foundation and its partners undertook a research inquiry to speak directly with women about their experiences in breast cancer care. This is a summary account of the complete initiative. Up Front used a range of methods over three years to bring women’s experience into focus: ) A review of recent research on women’s experience of breast cancer care; ) In-depth interviews with a diverse sample of 15 care providers, former patients and informal caregivers; ) Eight focus groups with 34 former patients from across Ontario; ) An extensive scan of the cancer care policy environment; ) A telephone survey of 802 women who have never been diagnosed; ) A community consultation involving 137 former patients, held throughout Ontario; and ) Consultations with 26 cancer professionals, held in Ottawa, Toronto and Sudbury.

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Wherever the project went, the views that participants expressed — whether in focus groups or community forums — had a high degree of concurrence. While some regional differences emerged, the deliberations were remarkably consistent whether from north or south, rural or urban Ontario. Our research revealed that most former patients experienced a difficult path through treatment. Only a small minority reported that their care had lived up to their expectations. Research participants told us that fighting breast cancer is “as much emotional as it is medical.” Women, they said, “should not have to struggle with the system while struggling with cancer.” From experiencing booking errors to finding themselves a “go between” among professionals, participants described how stress mounts up in having to coordinate, manage and navigate one’s own care without much direction or emotional support along the way. Summing it all up, the main message was that having breast cancer is stressful in its own right, but that the health care system often makes it even more so. By contrast, a small minority of participants reported experiences of “excellence” in their care, “fabulous providers” and “no problems,” which seemed to underline inconsistencies that most other former patients cited. Interestingly, the larger sample of former patients participating in our community consultation brought out a small number of women who had experienced optimal breast cancer care. Their outlook on the health system, its providers

EXECUTIVE SUMMARY

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and their own lives stood out sharply against the experiences of other participants. What could make treatment for breast cancer a “wonderful” experience? The main ingredients seemed to be what most other participants wished for: “informed” participation, “emotional support” and “timeliness.”

uncertain circumstances they found themselves in. They recalled feeling angry and resentful, rather than empowered, by having to navigate their care path without support. Most participants in the inquiry wanted navigation assistance in the form of a supportive professional.

PRINCIPAL FINDINGS

Provider Knowledge

Most former patients had more critical observations about breast cancer care. Women who had been through it told us about inherent structural weaknesses in the cancer care system that made their course of treatment appear to have no defining compass and no one responsible for steering them through it. The impact, they pointed out, only worsened the apprehension and anxiety they were already feeling with their cancer diagnosis.

Our research participants often expressed disappointment with the breast cancer knowledge of their primary providers. “What is the role of doctors if they aren’t the experts?” Family practitioners in particular were seen to be deficient in their knowledge of symptoms, treatment information, follow-up care and cancer-system navigation in general. Standards of Care

Communication/Coordination Linkages among providers were largely perceived as problematic. Former patients described their care trajectory as “disjointed,” “lacking continuity” and “riddled with gaps.” Professionals “not being in touch with each other” was commonly cited as a flaw in the system that not only aggravated patient anxiety, but also, in some cases, instigated clinical errors. Emotional Support The emotional shock of a breast cancer diagnosis was a common theme, frequently reported as an unrecognized psycho-social issue affecting the whole course of breast cancer treatment. While care of the “physical body” was perceived as satisfactory, the care of the “whole person” was generally perceived as “sorely lacking” and at worst “inhumane.” Treatment Information Accessing reliable information was seen to be a fundamental need frustrated by emotional turmoil and systemic inconsistencies. “I didn’t know,” “no one told me” and “I had to find out on my own” were common reflections. Feeling “numb and dumb” with their diagnosis, former patients described being unable to absorb critical information required to participate in decisions about their care. Navigation

Many former patients wondered about the existence of standards of care for breast cancer treatment, and if so, whether they were actually being applied. Most of these issues appeared to be experienced to a greater extent by low income, aboriginal, immigrant and rural women. Ironically, those women who could least afford the burdens of illness often had higher associated costs due to their distance from facilities and the extra demands brought about by travel and absence from home and family. The Up Front project presents a coherent summary of women’s experiences with breast cancer that demonstrates where systemic improvements could benefit all Ontario cancer patients. Our participants told us that patients should not have to manage their own care for fear of “falling through the cracks” and that cancer care should not take “years to get over.” The Canadian Breast Cancer Foundation and its partners are in a good position to make a difference. Women from all over Ontario told us they expect more of cancer care. This report’s recommendations support ventures that show potential to make prevention information more useful, screening more pervasive, diagnosis more supportive, treatment more navigable, continuing care more accessible and, in the end, “death kinder to women.” )(

Some former patients found it necessary to become “aggressive” or “pushy” to “manage” their own treatment programs out of distress with the

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EXECUTIVE SUMMARY

Up Front: New Perspectives on Breast Cancer

INTRODUCTION Former breast cancer patients have been describing distress with various aspects of cancer treatment for years, but little evidence existed that told the whole story. “Until you’ve been diagnosed, you don’t really know,” is a commonly heard reflection. So, with the future of breast cancer care in mind, the Ontario Chapter of the Canadian Breast Cancer Foundation undertook a community-based research initiative to speak directly with women about their experiences. The goals of the project: 1) Understand breast cancer care’s strengths, limitations and emerging issues 2) Develop partnerships for change 3) Create strategies to address gaps 4) Inform funding priorities Conducting this inquiry involved a prolonged and rigorous process to reveal the character of the interface between breast cancer care services and ordinary people. Partnerships were formed with the Canadian Breast Cancer Network, the Ontario Breast Screening Program (OBSP) of Cancer Care Ontario (CCO), the Princess Margaret Hospital Foundation and Willow Breast Cancer Support Canada. The initiative aimed to produce evidence for the Foundation’s own planning and to influence developments in the health care field wherever possible. The World Health Organization believes that community health organizations have an important role to play in reorienting health systems. Research efforts are widely regarded as essential to the process. The Ottawa Charter for Health Promotion encourages community organizations to take the lead in “shaping health policy,” “creating supportive

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care environments” and “strengthening skills for health improvement.” Community-based research facilitates this process by organizing a framework in which people may learn collectively what needs to be done and how to move forward. The most extensively acclaimed model of community health planning, Precede-Proceed, sets out several phases of research to accomplish these goals. 41 According to decades of experience, health promotion planning initiatives have proven most effective when “preceded” by extensive investigation of the “social,” “behavioural” and “environmental” conditions surrounding a health issue, taking into account existing “educational,” “organizational” and “policy” arrangements. The Up Front project is just one example of numerous investigations worldwide validated by the Precede-Proceed Health Promotion Planning Framework. One of the many concerns of this project was the role of social determinants, the socio-economic factors that influence health beyond those in individuals’ personal control. Many chronic diseases, breast cancer included, are known to have greater impact on people with less income, education and social power. It has been demonstrated that lowerincome women, for example, have less frequent diagnoses of breast cancer but greater mortality. Research in Ontario has shown that this inequity is not alleviated by universal health care. 46 To illuminate the role of social determinants, the Up Front project undertook a concerted effort to include lower-income, rural, aboriginal and immigrant women amongst those who shared their experiences in the inquiry. )(

INTRODUCTION

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METHODOLOGY This report synthesizes the findings of several sub-studies. Each was guided by a general inquiry framework, moving stage by stage through an iterative process, over a three-year time frame. The final result brings together both qualitative and quantitative methods to inform a descriptive account of breast cancer care in Ontario from the perspectives of those who know it directly in their own experience. Such “mixed-method” studies are increasingly regarded as a powerful way to explore practice and policy in health care.

of 46 research reports was selected for extensive review and synthesis. The sampling procedure included research conducted in Ontario and nationally that investigated women’s experiences with breast cancer, including unmet needs across the cancer care continuum, encounters with cancer care services and special needs or inequities. To narrow the field for the purposes of the project, the literature review excluded bio-medical research on such issues as the causes of breast cancer, prevention and risk reduction.

Each of the studies underlying the Up Front project produced a final report detailing methods and findings. The following summarizes the methodological considerations of each substudy to describe the extent of the knowledge development effort represented by this report.

The synthesis used matrix analysis to summarize the contents of each selected research article under the following headings: objectives, methodology, findings and recommendations. Each article was reviewed thoroughly and relevant details were reported in the matrix. The final report extensively described the literature review process, summarized the general findings and detailed the contents of the 46 articles selected for synthesis. The summary and synthesis were then used to inform the further stages of the Up Front project, including the final report.

LITERATURE REVIEW To launch the Up Front project, a systematic literature review was conducted by an independent consultant. The review process began with hundreds of abstracts published between 1998 and 2004, but only a sample of the most relevant could be selected for the purposes of the project. Narrowing the field required orderly procedures to be developed, focusing on the project’s goals to investigate women’s experiences of breast cancer care, with particular regard for the impact of social determinants of health. An initial field of 734 abstracts was eventually reduced to 183, and finally a purposive sample

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METHODOLOGY

QUALITATIVE STUDIES To conduct the primary study of experiences with breast cancer care, the Up Front project selected an experienced health care consulting group from a request-for-proposal process. Their research used in-depth interviews to generate qualitative data on breast cancer care in Ontario. Key informants, who either worked in

Up Front: New Perspectives on Breast Cancer

cancer care or who had intimate experience with it, were interviewed by telephone. Systematic efforts were made to ensure a diversity of perspectives and experiences. Fifteen stakeholders were chosen for the interview panel, including women recently recovering from treatment, their informal caregivers, professional care providers and program administrators. The interviews were audiotaped and the recordings transcribed verbatim.

cancer. The audiotaped interviews were structured using themes generated from the key informant interviews. Transcripts from these interviews were combined with the focus groups for subsequent analysis.

Members of the research team reviewed the transcriptions independently and subsequently used a consensus process to build an analytical framework. The contents of the interviews were analyzed for perceptions concerning gaps and challenges in breast cancer care as well as ideas about improving conditions. This process disclosed an array of themes that captured the main content of the interviews:

SURVEY RESEARCH

) care coordination ) emotional and practical support ) treatment information ) provider-patient communication ) distance from care ) wait times ) provider roles A second stage of the qualitative study used focus groups with women who had been through breast cancer treatment and an additional series of telephone interviews with informal caregivers. The study team enlisted the assistance of local treatment support group facilitators to identify potential focus group participants. Five focus groups were carefully recruited to achieve a diversity of regional, cultural, age-group and stage-of-treatment perspectives. A total of 34 women participated, including those in palliative care, recent immigrants, young mothers with children, rural residents and aboriginals. The focus groups were held in Sudbury, Peterborough, Waterloo and Toronto. Each was conducted as a structured experience using themes gathered from the key informant interviews as a springboard for discussion. The sessions were audiotaped and transcribed verbatim. An additional 10 telephone interviews were conducted with informal caregivers, including spouses, sisters and daughters of women who had been diagnosed with breast

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The qualitative studies were completed by a formal research report that included a full description of the process, recruitment methods, analytical strategies and findings.

To obtain a broad view of women’s knowledge and experience of breast cancer, the project enlisted the services of York University’s Institute for Social Research to conduct a public opinion survey. The survey was designed to probe the experiences of women who had never been diagnosed with breast cancer. A representative sample of Ontario women was generated using random digit dialing (RDD) methodology. Using RDD gives all households, urban or rural, and not just those with listed numbers, an equal chance of being selected. Interviews were conducted with 802 adult women, 18 years of age or older. This response rate was 64.3% of 1248 households deemed eligible from the RDD procedure. Findings from a sample of this size are considered an accurate representation of the population within plus or minus 3.5 percentage points, 19 times out of 20. The questionnaire was developed and validated in an iterative process to determine final wording and the order of questions. A formal pretest was used to check women’s understanding of the questions and the overall flow of the interview. Due to the intimacy of the survey topic all interviews were conducted by women. Survey respondents were probed on the following topics: ) most important health problem ) breast health behaviours ) likelihood of getting breast cancer ) knowledge about breast cancer ) breast screening and barriers ) prevention ) information needs ) advocacy ) demographics

METHODOLOGY

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A comprehensive report of the general findings and specific information about variances among different groups of women was produced from the survey. POLICY ENVIRONMENT SCAN The Up Front project enlisted a consultant to examine the existing policy environment for breast cancer programs and services. The environmental scan included a review of relevant literature, policy documents and interviews with 15 stakeholders from Ontario and elsewhere in Canada. The scan considered both Ontario and national contexts as well as those of Australia, New Zealand, the United Kingdom and the World Health Organization. Policies, programs and initiatives were investigated and compared, including those of both government and nongovernment organizations. The scan reviewed documents to investigate stated policy and program directions, but not their implementation. Stakeholder interviews provided opinions and perspectives on how policy implementation was working on the ground. A complete report of the environmental scan was produced considering policy on breast cancer under the following themes: ) policy change and uncertainty ) rebalancing preventive, supportive and palliative care ) system access and coordination ) system issues: treatment costs, human resources and aging population ) accountability ) advocacy COMMUNITY CONSULTATION Once all phases of the foregoing research had been synthesized, the Up Front project undertook a consultative initiative to share the main findings with select communities across Ontario. The consultation invited women with breast cancer experience and their caregivers to compare the research findings with their own experiences, provide feedback on relevance and

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METHODOLOGY

contribute further suggestions toward improving the system of care. Health care and social service providers were invited separately to consider Up Front findings from their professional perspectives. Foundation volunteers and staff succeeded in hosting eight discussion forums in Ontario communities, bringing together 163 individuals in all. Consultations involving a mix of 137 former patients and their caregivers were held in Ottawa, London, Toronto, Etobicoke, Scarborough, Sudbury, Sault Ste. Marie and Timmins. A separate series of discussions involving a total of 26 professional providers was held in Ottawa, Toronto and Sudbury. The consultation process presented a structured format for public discussion of breast cancer treatment and care. Participants were invited to share experiences and make recommendations about how the breast cancer care system could be strengthened. The discussion format probed participants’ experiences with prevention, screening, diagnosis and all phases of treatment. Systematic procedures were used to document what participants had to say. Designated note takers were provided with a training brief in advance and a structured workbook where they could record small group proceedings, including the verbatim comments of participants. A group of note takers used laptop computers to record dialogue in plenary discussions. Participants were provided a further opportunity for private comment on a program evaluation form. All materials were transcribed and compiled into a complete electronic text of the community consultation. A research consultant sorted the content to expose the main themes of the discussion. Subsequent analysis examined the content of participants’ talk for richly descriptive accounts of lived experience with breast cancer care. Samples of text recalling vivid personal encounters or critical incidents were selected to illustrate how breast cancer care is perceived first-hand. These were compared with material from the qualitative research phase of the project to validate the findings.

Up Front: New Perspectives on Breast Cancer

UP FRONT REPORT

LIMITATIONS

To synthesize the preceding studies the author employed matrix analysis to assemble a complete picture of the inquiry. The matrix frames the majority of the report in chapters representing the breast cancer care continuum: prevention, screening, diagnosis, treatment and continuing care. Each continuum chapter subsequently reviews significant findings from the inquiry by drawing from the sub-studies under the following headings:

The result of this complete process has produced a rich account of breast cancer care in Ontario from the perspective of those who know it best from their own experiences. It should be kept in mind that this research was exploratory. Its main purpose was to consider cancer care practices, policy and programs in terms of what women and their caregivers experience. Given these limitations, this report is not an evaluation of Ontario’s cancer care services. However, the findings may be useful in developing future evaluative studies, generating hypotheses for further research, providing fresh insights into the complexities of patient experiences in treatment or inspiring new approaches to cancer care programs. )(

) In Context ) Research Literature ) Up Front Findings ) Policy Environment In Context: These segments introduce the subject of each continuum chapter, setting the context for what was learned in the inquiry. The content of these segments was derived from a broad interpretation of all data from the inquiry and a much wider reading of related research and media on breast cancer. Research Literature: Relevant studies of breast cancer and its treatment are interpreted in these segments. Only those studies selected for inclusion in our inquiry on “women’s experiences of breast cancer” are covered in this section. Up Front Findings: Data derived directly from our research subjects in various parts of the study such as interviews, focus groups and the public opinion survey are reviewed and interpreted in these segments. Policy Environment: These segments review relevant policy documents recovered in the scan. Participants in sub-studies reviewed in this report provided many suggestions for the improvement of cancer care services. These are described in detail at relevant points in the document.

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METHODOLOGY

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PREVENTION IN CONTEXT Until we know for certain what causes breast cancer there can be little real certainty about how to prevent it. Stopping cancer from developing in the first place is the desired goal, but one that is hindered by current scientific knowledge. Breast cancer’s strong association with reproductive hormones seems clear, but the mechanisms that lead to breast cancer remain elusive. Indeed, breast cancer appears to have multifactorial origins, which might include a mix of predisposing conditions, lifestyle factors, substance exposures and individual genetic makeup. Currently, breast cancer prevention is best expressed in terms of reducing risk factors. Since some of the known risk factors may be controlled and others cannot, prevention means in effect acting on the reducible risks. Family history and aging are non-modifiable; however, healthy body weight, exercise and diet can be controlled. Hormone replacement therapy may be eliminated or limited for menopausal conditions. Exposure to toxic chemicals found in detergents, pesticides and plastics can be reduced, but less so when they persist as low-level environmental contaminants. In the absence of scientific certainty, breast cancer advocates are taking a precautionary approach by urging women to reduce all the risks they can manage.

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PREVENTION

There is little certainty that risk reduction will prevent breast cancer in everyone, but there is a growing belief that alerting women early will have a payoff in terms of the whole population. Research evidence indicates that breast cancer incidence can be reduced theoretically by 30% in this way, although it would be impossible to predict which individuals would benefit. The aim would be to shift risk factors in a favourable direction over the entire population. For instance, banning known carcinogens in the workplace and industrial waste might have such a broad population effect. In the meantime, research into the cause of breast cancer will continue to disclose new approaches to prevention. It may only be a matter of time before science produces an answer that will prevent much more breast cancer than women currently experience. RESEARCH LITERATURE In view of the project’s focus on women’s experience, our review of prevention research concerned studies of women’s awareness, perceptions and assumptions about the risk of developing breast cancer. These studies tend to show that women’s perceived risk of developing breast cancer is often

Up Front: New Perspectives on Breast Cancer

inflated. Indeed, most women seem to experience some degree of “breast worry” depending on family history and exposure to cancer in other women around them. 58 One problem is knowledge. In spite of recent attempts among community cancer organizations to make risk factors and risk reduction practices clearer, research continues to show that few women have sufficient knowledge for breast cancer prevention. Women are most likely to say that family history or lifestyle are risk factors. Yet, only 5–10% of breast cancers are thought to be inherited. Thus women who emphasize family history tend to overestimate their personal risk and underestimate their capacity to act on prevention. The often repeated “1 in 9 will get breast cancer” message may be contributing to similar misconceptions. 9, 24 Even so, the way in which perceived risk translates into personal action on prevention is rarely very direct. As with many health issues, only a small proportion of women who do know their risk factors seem to take preventive action. Genetic screening has raised additional worries among women with family histories of premenopausal breast cancer; however, the role of genetic screening information raises considerable doubts about what steps to take next. Since prophylactic mastectomy or oophorectomy (removal of the ovaries to limit the supply of estrogen) are often the only available solutions, and not all of those genetically predisposed will get breast cancer, these women need specific information and support.24 Studies of cultural and language factors have shown that the ways in which cancer and risk are described by providers and resource materials affect the message women receive. Immigrant and aboriginal women often need information to be delivered in a way that respects their cultural perspectives. Thus there continues to be a need to develop approaches to risk communication and breast health education that are culturally sensitive. 8 UP FRONT FINDINGS Most of what the project learned about perceptions and beliefs about breast cancer prevention emerged from the random sample telephone survey of 802 women from across the Ontario landscape.

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Breast cancer certainly is a “top of the mind” health issue and most often mentioned. Breast cancer was the first mentioned, most important issue for 40% of those surveyed. By comparison, other cancers were considered most important by 21% and heart disease by 14% of respondents. The reality is that heart disease is by far the leading women’s health issue. The more educated women of the survey were most likely to have known this. It seems clear that women are very attuned to breast cancer even if they do overestimate its importance relative to other health issues. But does concern lead to action? The survey asked women what they do to maintain their health. About 67% claimed that they engaged in physical activities or exercise. About 63% said they tried to eat a healthy diet. Higher income, more educated women were most likely to have engaged in these activities. The survey also probed smoking and drinking. Only about 15% of the women surveyed were “daily” smokers and 5% “occasional.” About 64% of survey respondents were “moderate” drinkers; 21% were “near-daily drinkers” and 15% were “non-drinkers.” Household income seemed to make little difference to smoking or drinking behaviour. Women’s perceptions about the cause of breast cancer might offer insight into their beliefs about its prevention. The survey found that the most often mentioned cause was “family history,” by 35% of the sample. The next most commonly mentioned causes were “smoking” (7%) and “pollution” (6%). These findings certainly reflect many uncertainties. Rightly or wrongly, women seem attuned to breast cancer in their families, and this has an important bearing on how they perceive their personal risks. The survey probed perceptions and misperceptions. About 38% of participants, apparently provoked by intense concern about the issue, felt they were likely to get breast cancer. The actual lifetime probability is one third of that: 11.4%. Nevertheless, in reverse of expectations, the survey found that 65% of older women felt themselves to be less at risk, even though the likelihood of getting breast cancer increases with age.

PREVENTION

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POLICY ENVIRONMENT

STRATEGIC CHALLENGES

Cancer prevention has taken on a sense of urgency in recent years, as health authorities have come to recognize the looming potential for a surge in society’s burden of cancer resulting from population aging. Cancer specialists are realizing that it may be worthwhile to pursue moderate reductions in cancer incidence by doing prevention aggressively, even if the causes are not perfectly clear. Lowering the number of new cancers would reduce pressures on the care system so that those who do get cancer will get better support. This forward thinking approach is known as “cancer control.”

If breast cancer incidence can be reduced by 30% through reducing controllable risk factors, what kinds of contributions would help to reach this goal? Since the underlying cause and associated risks of breast cancer are still unknown, what should done in the meantime? )(

Generally, there has never been a time where interest in cancer prevention has been greater than it is now. Canadian Strategy for Cancer Control (CSCC) National policy on cancer is organized in the Canadian Strategy for Cancer Control (CSCC). The aim of the prevention policy is to create a prevention “system” by organizing the many community-level cancer organizations that already exist. Cancer-control prevention strategy emphasizes whole population approaches that would change people’s environments to support health. This is “big picture” prevention where people change because their environment changes, e.g., healthy school lunches, workplace fitness programs. 12 Cancer 2020 Cancer 2020 is Cancer Care Ontario’s plan to reduce cancer incidence. Cancer Care Ontario is an organization that steers and coordinates Ontario’s cancer services and prevention efforts, and is the provincial government’s chief cancer advisor. The plan is forged in the view that, even without full scientific evidence for cause-andeffect relationships, it is still desirable to reduce exposure to any potential causes of cancer. Cancer 2020 aims to reduce breast cancer incidence 30% by focusing on diet and physical activity. The plan outlines an overall preventive strategy that includes tobacco use; diet and nutrition; healthy body weight; physical activity; alcohol consumption; occupational carcinogens; environmental carcinogens; ultraviolet exposure; and viral infections. 22

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Up Front: New Perspectives on Breast Cancer

SCREENING IN CONTEXT The aim of breast cancer screening is to detect “smaller tumours earlier,” guided by the assumption that timely surgery and treatment increase the likelihood of long-term survival. Not all breast cancers, however, behave so predictably in a diverse population. Thus, studies evaluating the effectiveness of screening techniques, especially mammography, have yielded controversial results. Depending on a variety of factors, including age and screening intervals, the evidence either does or does not show an improvement in the chances of surviving breast cancer.

age range. One of the problems with knowing more accurately how many women participate is that only about 40% of all mammography in the province is currently conducted by the Ontario Breast Screening Program (OBSP), which operates in dedicated breast screening centres, affiliate sites in hospitals and a mobile coach in the north. The balance is conducted in diagnostic clinics that bill the Ontario Health Insurance Program (OHIP) for mammography services. The goal of the OBSP is to increase participation to 70% in its clinics. 45

Most cancer care organizations endorse screening, despite the controversy. Mass screening mammography is thought to have played a key role in a 30% reduction of breast cancer mortality over the last decade. The explanation for improved survival is likely a combination of factors, including early diagnosis, multi-disciplinary care and improved treatments. Screening widely, across the whole population of women, is thought to have contributed to finding cancers before they were otherwise detectable and could do more damage or negatively affect survival. Cancer control advocates continue to believe that increased screening participation will improve survival and will also decrease pressures on the health care system.

Another controversy for screening programs is the age range. The best available evidence suggests that screening mammography can reduce mortality by 35% in the 50–69 age cohort. The OBSP suggests screening at least every two years for women in the 50–74 age range. In British Columbia and the United States, screening is recommended for women starting at 40. Screening in the 40–49 age group, however, is at the heart of the age-range controversy because mammography appears to be least beneficial to this group. Nevertheless, screening advocates point to the increasing number of breast cancer cases found among women in their forties as a reason to encourage mammography despite the controversy.

Participation in screening mammography is considered to be sub-optimal in Ontario, calculated as low as 27% and as high as 58% in the 50–74

Screening mammography is still considered the best hope for women’s survival. The urgent need is to increase participation. Whether the controversy

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SCREENING

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has caused some women to doubt their need for screening is unknown. Advocates are searching for ways to get as many as 90% of women over 50 out for regular mammograms. RESEARCH LITERATURE Our exploration of recent research on women’s experience of breast cancer screening produced studies investigating the influences on and obstacles to participation. Ironically, women of recommended screening age (over 50) seem to perceive a greater number of obstacles than younger women. Women of all age groups, however, have been shown to have more confidence in the tumour detection capabilities of mammograms over clinical breast examination (CBE) or breast self-examination (BSE). It seems the greatest influence on having a mammogram is the advice of a physician. One of the major barriers is fear of finding cancer. 4, 61 Due to concerns about broad participation some recent studies have focused on the screening experiences of women from diverse cultural backgrounds. This research has shown that immigrant and aboriginal women experience significant cultural and language barriers. Women from some ethnic cultures may misperceive themselves to be at lower risk than other Canadian women. Participation may also be impeded by cultural codes framing modesty or privacy issues for some immigrant and aboriginal women. These studies often recommend language-appropriate and culturally sensitive outreach strategies to improve screening participation in such groups. 1, 2, 4, 62, 64 While research on breast cancer and women with disabilities is apparently quite limited, one study revealed that multiple physical barriers prevent access to screening facilities and machines. Obstacles to participation included screening site locations, transit availability and the physical accessibility of entrances, parking, elevators, doors, waiting rooms, washrooms, changing rooms, mammography rooms, mammography equipment, ultrasound equipment and biopsy rooms. 5 Due to the growing demand for genetic screening, recent studies have been investigating women’s experiences with test results and implications for care. Genetic screening has been shown to induce intense levels of distress and anxiety among women with positive results. The benefit these

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women see in knowing their genetic predisposition is that it increases their vigilance over changes in their breasts. While most apparently do not favour prophylactic mastectomy as a preventive, some see oophorectomy as a more acceptable alternative. In this way genetic screening has raised a range of specific emotional and information support needs. 28, 47, 56 UP FRONT FINDINGS Most of what we learned about experiences with breast cancer screening came from our survey of 802 Ontario women. Women generally know the most obvious symptom of breast cancer: 84% knew that a “lump in the breast” was a symptom; 23% mentioned “pain”; and 18% a “discharge from the nipple.” Other signs and symptoms were less frequently mentioned. Slightly over half of the respondents could identify only one symptom, and 11% did not know any symptoms. Clinical breast exams (CBE) were a commonplace experience: 91% of our survey respondents reported having had a clinical exam: 61% “within the last year”; 25% “within 1–2 years”; and 14% “more than 2 years ago.” A majority of the 9% who had had no clinical exam were under 40. As many as 91% of survey respondents reported examining their own breasts: 46% “monthly”; 23% “every 2–3 months”; and 29% “not in more than a year.” Those more likely to believe they would get breast cancer were more likely to examine their breasts. Three-quarters of the women who did not examine their breasts did not think they would get breast cancer. Rural women were more likely to examine their own breasts than urban women: 95% v. 90%. Immigrant women were less likely to examine their breasts than those born in Canada: 84% v. 93%. Women’s tendencies to examine their own breasts did not appear to be related to their education. Asked where they got their information about examining their breasts, 88% reported being given material: 67% by doctor or nurse, 9% from the popular media, and 5% through the OBSP. Participation in mammography was surprisingly strong in spite of the controversy surrounding it: 97% of survey participants knew the term “mammogram.” Considering all age groups, 54% of survey respondents reported ever having a

Up Front: New Perspectives on Breast Cancer

mammogram: 38% every 2 years; 30% every year; and 5% every 3 years. Considering women by age group, 92% of survey participants over 50 had ever had a mammogram, while the figure was 57% of those 40–49, and 10% of those under 40. Concerning their knowledge of the target screening age, 34% of survey respondents correctly identified 50, while 45% thought it was 40. Younger women with less education were likely to think the target age is younger, while older women with more education were more likely to believe the age is 50. One interpretation of the survey results is that many women believe that mammography should start at 40. The OBSP appeared to be less widely known than mammography in general. Fifty-two per cent of survey respondents had heard of the OBSP; 7% were unsure; and 41% had never heard of it. Twentyfive per cent of those who knew the OBSP had heard about it from their doctor. Age was the strongest predictor of who knew about the OBSP. Women over 50 were most likely to know of the OBSP. Women born in Canada were also more likely to know the OBSP, as were rural women. Lower-income women were less likely to know the OBSP. Toronto women were least likely to know of the OBSP. Considering the strength of participation, belief in the effectiveness of screening was not as solid as expected. Forty-eight per cent of survey respondents believe mammograms can detect most cases, while 43% believe that screening their own breasts can detect only some cases, and 40% believe that clinical exams can detect only some cases. In thinking about ways to improve participation, the survey asked how respondents would feel about receiving a “prompt letter” from a provincial health agency. Eighty-five per cent of respondents aged 50–74 would welcome a prompt letter, but this figure decreased to 76% with the knowledge that health records would be reviewed. Women 50 or older were less likely to agree that reviewing their health records was appropriate.

POLICY ENVIRONMENT Screening has had longer and stronger acceptance than primary prevention in breast cancer control strategy. Canadian Strategy for Cancer Control (CSCC) Screening mammography is seen by the CSCC as a vital contribution to cancer control goals, though quality improvements are desired. Cancer specialists know that abnormal mammograms cause much distress and suggest that there needs to be a universal agreement on the appropriate management of people with positive results. The strategy suggests screening must be supported by public education, including education about primary prevention when applicable. The CSCC also stresses that education must address the cultural and linguistic diversity of the population and the unique needs of hard-to-reach groups. 13 Cancer 2020 Cancer Care Ontario Breast screening is involved in a general strategy to reduce the impact of all cancers. The plan is to increase the participation of women aged 50–69, currently estimated at 62%, to 90% by 2020. 22 Ontario Cancer Plan 2005-2008 The plan states: “All breast screening in the province should become affiliated with the Ontario Breast Screening Program as a means to support recruitment and quality targets.” 20 STRATEGIC CHALLENGES If the cure rate through early detection can be increased 30% by having more women screen regularly, what contributions would help to reach this goal? Since screening centres are considered to be the ideal place to educate about breast cancer and its prevention, what contributions would optimize this opportunity? )(

Women over 50 who had not had a mammogram (8%) were asked “why?” “My doctor hasn’t suggested it,” was the top reason.

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DIAGNOSIS IN CONTEXT Receiving a diagnosis of breast cancer is commonly recalled as a shattering moment, and yet, the news is delivered much the same way thousands of times a year in Ontario’s health care system. The suffering that so many women experience amply demonstrates there is a service gap in breast cancer care that begins at the point of delivering the diagnosis. Ontario’s array of breast cancer care service organizations and care facilities is widely acknowledged by many of its own professionals to be fractured and unfocused.20 The absence of links among providers, care path coordination and navigation support impacts on what women experience as they undergo treatment, starting with their breast cancer diagnosis. Largely because there is no link to a supportive care service, emotional support is commonly absent when the diagnosis is delivered. The trauma that many women experience thus remains unacknowledged and the consequences persist, sometimes for years later.67 In most cases a breast cancer diagnosis is delivered by a surgeon, who may be professional, caring and supportive, but not linked to the cancer care community in a way that offers immediate support to the patient. If the diagnosis is delivered in the surgeon’s office or at a hospital, women commonly experience the complete absence of a cancer care structure they can feel confident about. For several reasons, including supportive care needs, integrating surgeons into the cancer care system seems a good idea. The difficulty is

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that few surgeons specialize in treating cancer, let alone breast cancer. It has been shown that the way in which a breast cancer diagnosis is delivered may influence a woman’s trajectory over the entire course of treatment. Most women report some form of shock with their diagnosis no matter how well it was delivered. Patient support needs at that moment are largely informational; however, their emotional state plays a significant role in their receptivity and ability to make critical decisions. Former patients call it the “numb and dumb” stage. A breast cancer diagnosis may involve several steps through imaging, biopsies and other tests before being confirmed, and thus wait times at each stage play a role in patient distress. Women told us that discrepancies in information, conflict between providers and system fragmentation intensify stress while they are already in a stressful state. It was quite common for women to say they had to insert themselves aggressively into the management of their care. RESEARCH LITERATURE Our review of research featuring women’s experience of a breast cancer diagnosis showed that patient-physician communication affects patient satisfaction as well as general health outcomes. Much of the research demonstrating the need for supportive care at the time of diagnosis has been almost exclusively related to breast cancer.

Up Front: New Perspectives on Breast Cancer

Lengthy wait times from abnormal mammograms are associated with ambiguity, anxiety and fear. 27 Approximately 7–10% of women screened will receive abnormal results, and 80% of abnormal screens will not be cancer. Anxiety about abnormal mammograms disrupts personal and family life and may affect willingness to continue screening at recommended intervals. This evidence only serves to underline the degree of anxiety and fear experienced with an actual cancer diagnosis. 54, 55 Cancer specialists have suggested that an ideal care model for breast cancer would use facilitated referral to “integrated diagnostic units,” combining imaging, biopsies and support. However, few completely integrated diagnostic centres for breast cancer actually exist, largely because of the system’s disconnect with surgical practice. 14, 55 Studies have found that the most significant factor in the long-term psychosocial adjustment of women with breast cancer was their perception of the way the diagnosis was first communicated. Enhanced expression of physician empathy has been shown to be associated with less anxiety in women with breast cancer. 14 UP FRONT FINDINGS Most of what we learned about women’s experience of their diagnosis came from interviews and focus groups with women who had been through it. Evidently, no one among those who participated in the study had experienced optimal conditions. Women expressed a common view that the health system left the onus on the patient to coordinate their own care, navigate the course of treatment and make critical decisions—often based on confusing and contradictory information—at a time of excessive anxiety and fear. The common thread we found in participant experience of a breast cancer diagnosis was the absence of a visible care structure.

“When you’re absolutely devastated, there’s nobody there.” “You come out of your surgeon’s office like Bambi in the headlights.”

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“You feel as if you’re not being taken care of because you’re seeing a surgeon, you’re one of thousands of his patients, and he’s doing 12 surgeries a day.” Professional participants in the study also pointed to the health care structure as the source of the problem.

“It’s the way hospitals are organized and managed. They’re not managed according to a disease site.” Study participants said they found it next to impossible to take in information or make the key decisions about their treatment when they were first diagnosed. Women wondered why it was that physicians expected the patient, often with no support other than a pamphlet, to decide on the course of their treatment.

“It just seemed absolutely bizarre that the decision making would be left in my court, and I have to make choices between things without having any expertise to make the decisions.” Overall, our discussions with women suggest there is a critical disconnect between what physicians believe and want to do in “patient-centred practice” and what women actually experience in their care.

“I’m the patient not the cancer expert. I’ve never had cancer. I want to be treated as a patient.” Participant women suggested that support should be available from “day one” and that the quality of care needed to consist of more than a pamphlet. What was desired was one-on-one discussion with a woman who has been through a breast cancer diagnosis or with an oncologist. Personal contact was the all-important missing link.

“They [women] need to come into contact with this person as soon as they are told they have breast cancer, to go from the room in which they were told of their diagnosis into a counselling room for information and emotional support.”

DIAGNOSIS

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POLICY ENVIRONMENT

Ontario Cancer Plan 2005-2008

Leading cancer professionals have recognized the snag in the cancer care system during the diagnostic period. Indeed, much of what has been learned about the problem has emerged from experience with breast cancer.

Statements from the Ontario Cancer Plan hint at knowing about patients’ frustration, but offer little specific acknowledgement of the importance of diagnosis in the continuum.

Canadian Strategy for Cancer Control (CSCC) The stated goals of the CSCC recognize supportive care needs during the diagnostic period predominantly for information and emotional support. A well-integrated program would include access to information about the diagnostic process, the interpretation of test results and subsequently, the opportunity to talk about the implications of test results. 14 Based on experience with the few existing breast assessment units, the CSCC acknowledges that concentrating diagnostic services and medical specialists, coupled with information and psychosocial supports, does lead to a high level of patient satisfaction. However, a concern is that the benefit of completing the ideal diagnosis may be diminished by subsequent delays in scheduling surgery and consultation with a cancer specialist. Cancer Quality Council of Ontario (CQCO) The Cancer Quality Council of Ontario is a body within Cancer Care Ontario (CCO) with a mission to improve the quality and performance of all cancer services so that patients receive care that is timely, accessible and appropriate. The CQCO works to monitor and report on the quality and performance of the cancer system, and to provide strategies for healthcare providers and decision makers to improve cancer services. The CQCO’s guiding report, Strengthening the Quality of Cancer Care In Ontario, does not address the diagnostic period, although it recognizes a need to improve supportive care and wait times. 23

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“For the most part there are no clearly defined mechanisms for integrating and coordinating cancer services across the continuum. As a result, patients find services difficult to navigate and they often wait too long at each point in the care process.” The Ontario Cancer Plan hinges on Regional Cancer Programs that will link providers, patients, organizations and decision makers from across the spectrum of cancer care within a defined geographical area. This goal may well be an open opportunity for innovation in breast cancer care that could eventually be applied to all cancers. 20 STRATEGIC CHALLENGES Since the delivery of a breast cancer diagnosis is considered to be a crucial moment and the current approach lacks a critical link to support and navigation, what could be done to effect a solution? If a patient navigator is considered so widely to be a solution to many of the issues women face during treatment, what would help make it happen? )(

Up Front: New Perspectives on Breast Cancer

TREATMENT IN CONTEXT Women we spoke with commonly experienced breast cancer treatment as a series of isolated encounters with individual providers who rarely consult each other. They apparently found few perceptible links through the course of treatment that would give the impression that their care was being managed.

and time issues. Increasing distance from the cancer centre seems to intensify these issues. Even those living in urban areas may encounter problems with travel to treatment centres, but those in rural areas experience long drives, accommodation away from home, absence from the family and all the associated costs.

Breast cancer treatment usually covers three distinct phases—surgery, radiation and systemic therapy. Normally, surgery is arranged at a local hospital; however, often cancer support is unavailable. Thus patients are frequently unaware of a cancer care system until they arrive at a cancer care centre for radiation treatment. Consequently, women commonly experience their trajectory through breast cancer treatment as fragmented, uncoordinated and isolating. 15

Systemic therapy introduces an array of advanced information issues associated with understanding potential benefits and potential side effects. This difficulty increases with participation in experimental treatments.

Wait times are an issue with each separate phase of treatment and each contributes to the general apprehension patients experience.57 Surgical wait times may vary according to the schedules of individual surgeons or priority procedures in the operating rooms. Surgery is generally linked to acute care in hospitals and often lacks a crucial connection to cancer care centres. 15 Although radiation therapy is integrated with the cancer care system, the centralized location of treatment equipment raises transportation, cost

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Navigation is widely recognized by many working in the field to be a fundamental issue for women trying to cope with information, communication and anxiety issues in the cancer care service system. Supportive care is usually unavailable for most women until they reach a cancer centre. Even there, many former patients we spoke with were unaware of the existence of supportive care services. Homecare nursing is accessible to some women where resources are available, but those in more distant suburban, rural and remote areas reported problems with access. Practical support for women with child care and household responsibilities was often needed but unavailable, too expensive or inaccessible. Geographic and financial inequities often intensified these burdens.

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RESEARCH LITERATURE Our review of research featuring women’s experiences in breast cancer treatment uncovered several studies of patient perceptions. This research suggests that women’s interactions with providers are more satisfactory when they feel that their personal efforts at acquiring information are valued by their provider. In such instances, women experience more sharing of power and partnering in decision making. Women found interactions unsatisfactory when they felt providers “brushed off” or “ignored” information that they had acquired on their own. In these situations, women felt “powerless” and provider interactions had lasting negative effects. 5, 6 Some research has investigated the treatment experiences of rural residents. In general, rural women encounter exceptional burdens over the course of their treatment: travel time to treatment; time away from home; household management and child care; social isolation; inaccessible supportive care; travel costs; and unrecoverable hidden costs. 32, 39 Studies of breast cancer patients have suggested that significant numbers experience fatigue and excessive anxiety while undergoing treatment. Fatigue is known to interfere with daily life more severely than is commonly recognized. Access to quality information and services to treat these common symptoms remains a system concern. 3 UP FRONT FINDINGS Participants in this study often perceived the absence of explicit communication among the professionals treating them as a signal that their care was not being effectively managed. A common reaction was for women to assume responsibility, often quite unwillingly, for keeping track of their own trajectory.

“The surgeon... the oncologist... the radiologist, you don’t feel they’re a team. I never got the impression that they talked to each other.” “To you it feels like a life-threatening situation, but you’re just a patient to them.” “Half the time the chemo orders came in wrong and the only reason they were made right was because the chemo nurses or the pharmacist intervened with the doctors.” 18

TREATMENT

According to what study participants perceived, the care system they encountered lacked “standards of practice,” or “comparable standards” to those in the United States. These women recalled that supportive care was not introduced until late in the course of their treatment, and they wondered why such an important service was unavailable from the beginning. Where available, the support of community cancer organizations was appreciated; however, such assistance was described as unevenly distributed and volunteers as unevenly qualified. Some women expressed disappointment with the reception and service they received from community cancer organizations. Because outpatient surgery was a common experience among study participants, home nursing care was felt to be necessary for managing dressings and drains. Yet such services were not consistently available among women in the study or not available at all to the rural residents we spoke with. Practical household support such as cleaning and child care was often needed but unavailable or unaffordable to women in the study. Lower-income women had difficulty with hidden costs such as transportation, salve for radiation treatment, antinausea medications, wigs and prostheses.

“We’ve gone and done the fitting for the prosthetic but I can’t afford it right now. I have to eat, you know.” “If I’m sick and can’t provide mothering to my children, where am I going to get the money to hire someone else to do the job.” Suburban and rural residents encountered travel issues and hidden costs ranging over the five weeks of radiation therapy. The greater their distance from urban centres, so it seemed, the greater the burden. Informal caregivers such as friends and relatives in the study reported that they needed but could not find information, guidance and support for their role. It was a universal desire of the women who participated in the Up Front project to have had a care coordinator or navigator dedicated to providing information, support and guidance throughout the course of treatment from the time of their diagnosis.

Up Front: New Perspectives on Breast Cancer

POLICY ENVIRONMENT

Ontario Cancer Plan 2005-2008

The fractured care experience that women encounter during their treatment is widely recognized by many professionals working in the field.

The Ontario Cancer Plan outlines six priorities for action:

Canadian Strategy for Cancer Control (CSCC) Because surgical oncology has evolved within the acute care sector, it has lacked formally defined relationships with other cancer treatment disciplines. Thus cancer surgery lacks the infrastructure, process and systems to operate within an “integrated” cancer program. Radiation therapy issues apparently relate more to the capacity to handle the number of patients coming through the system. Systemic therapy issues evidently relate to keeping current with newly introduced medications and quality expectations within demanding cancer care environments. The CSCC believes “patient focused care” should be a standard for all organizations involved, including community cancer organizations. The strategy proposes the following: ) Developing care networks between cancer centres and community care providers; ) Optimizing communication between care providers through electronic records; ) Developing navigation aids/navigators to guide patients through cancer care; ) Providing patients with access to Internet sites for information, educational materials, guidelines, protocols, clinical trials etc. ) Respecting patients’ right to pursue complementary and alternative health care. 15 Cancer Quality Council of Ontario (CQCO) The CQCO describes how to improve supportive care services in Ontario: ) Obtain commitment to integrated supportive care for patients and their families;

) Broaden the development and use of provincial standards and guidelines; ) Implement regional cancer programs; ) Close the gap by reducing demand for cancer services and increasing capacity; ) Implement rapid access strategies; ) Invest in performance measurement and accountability; and ) Advance the coordination and focus of cancer research efforts in Ontario. Patient-focused regional cancer programs across Ontario intend to bring together regional cancer service providers and consumers to achieve integration and quality goals. Community involvement will be an important dimension. As part of their annual report to Cancer Care Ontario and their communities, regional cancer programs will be required to report on ways in which they involve the public and other stakeholders. 20 The plan recognizes that innovative new technologies are required to promote communication between the patient and health care providers and to help patients navigate their way through the complex cancer system. Ontario Cancer Plan, 2005 Progress Report The first annual progress report of the Ontario Cancer Plan claims that cancer services are improving. As one example, the progress report shows that the introduction of new radiation equipment reduced wait times 16%, from a median time of 5.6 weeks in the second quarter of 2004–05 to 4.7 weeks in the same time period of 2005–06. 21 STRATEGIC CHALLENGES

) Develop and test measurement tools for key indicators; and

Because rural and lower-income women suffer greater burdens associated with hidden treatment costs and travel, what should be done to support or advocate for them?

) Obtain dedicated resources to conduct the necessary work (information systems, clinical resources, research resources). 23

If integrated care is so desirable for the treatment of breast cancer, what can be done to facilitate its further development? )(

) Reach agreement on key supportive care indicators across the spectrum of cancer care;

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CONTINUING CARE IN CONTEXT Learning to live with the fear of breast cancer returning and spreading is one of the main challenges women face in moving forward and getting on with life. Women who do experience recurrence or metastatic breast cancer need to know their situation is not hopeless. Many women continue to live on productively with breast cancer. Nevertheless, the continuing care needs of women living with breast cancer are considerably more complex and the emotional distress more intense. Follow-up care questions, treatment side effects, quality of life and preventing recurrence are common issues. Women living with breast cancer are likely to need treatment information, symptom management advice, psycho-social support and palliative care services. The availability of services within reach and women’s awareness of their existence seem to vary depending on a range of factors. Women with breast cancer need supportive care services designed to meet the physical, social, emotional, nutritional, informational, psychological, spiritual and practical needs throughout their treatment, but especially during continuing care. 16 Currently, however, the services and partnerships required to meet the needs

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of women living with breast cancer and their family members are known to be in short supply. Programs remain unevenly distributed and, in many settings, the required interdisciplinary team does not exist. 16, 17 Across Canada there has been a move to shift cancer care from hospitals back into the community. Consequently, the family now shares more of the burden of care in the home, including dying at home. Thus the financial status of the home and the care capacities of family members can have a significant impact on quality of life for women living with or dying from breast cancer. Controlling pain and addressing psychological, social and spiritual problems constitute the main agenda of palliative care for patients whose disease is not responsive to curative treatment. 17 Unfortunately, however, palliative care is unevenly distributed and commonly not found as a key program. Health system reviews suggest that a reasonable allocation of resources to palliative care has yet to occur. As such, the majority of patients with advanced breast cancer continue to die following a period of illness characterized by the presence of pain, physical disability and varying degrees of distress.

Up Front: New Perspectives on Breast Cancer

RESEARCH LITERATURE Our exploration of the research on women’s experience of living with breast cancer brought forward studies of survivorship and continuing care needs. This research suggests that women’s experience of continuing care often revolves around seeking information and support to manage distress, anxiety and treatment side effects. It has been shown that women are generally less satisfied with symptom management in their care than cancer treatment itself. While physicians are seen as important sources of information, many women seek additional help and support from a range of other sources such as nurses, pharmacists, media and the Internet. Women often pursue complementary care services to help with symptom management, including those of chiropractors, herbalists, naturopaths and massage therapists. Indeed, some women need advice to sort through alternatives in their pursuit of quality of life. 3, 31, 36-38, 40 Research on those who turn to complementary and alternative care has shown that users were younger, more educated, had greater household incomes, were more likely to have attended a support group and to have undergone systemic therapy. Complementary care users were less likely to believe that standard treatments alone would either cure their cancer or prevent its spread. Users often wanted to make decisions on their own with some physician input; however, a lack of evidence on the efficacy of complementary care can be a barrier to such a dialogue. 7, 31 The promise of projects and programs that empower women to rise above their disease has been a subject of research on living with breast cancer. Support groups have been shown to have a significant impact on pain and anxiety management, although not on length of survival. “Dragon boating” has received much attention from professionals and women living with breast cancer: for women involved, breast cancer seems to recede into the background as they become focused on getting in shape and on the challenge and fun of paddling. Increasingly, dragon boating participants report being able to focus on life and living rather than on disease and the possibility of death—increasing their sense of “being in the moment,” of “mindful living” and “aliveness.” 34, 38

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The impact of breast cancer survivorship on the family and caregivers has been studied. The effects of anxiety, pain and fatigue can have a significant impact on women’s roles as mothers and wives. Children often need information and emotional support, which may or may not be available through school counselling programs. Rural women have been shown to experience greater practical and emotional burdens associated with travel, travel costs and isolation, all of which may affect both their treatment decisions and coping strategies. Lower-income women such as single mothers have been shown to experience particularly heavy burdens associated with employment, child care and financial problems. Having breast cancer can render lower-income women even poorer. 11, 24, 30, 35, 39, 59 Research on palliative care has shown that insufficient resources were in place from 1992–1999 to meet the needs of women dying of breast cancer. Although 70% of women with breast cancer died in hospital, consultation with specialists in palliative care was shown to be rare. A scarcity of palliative care specialists working in cancer centres and acute care hospitals continues to impact the delivery of endof-life-care. Family members have been shown to exonerate professionals from responsibility for such conditions in the belief that practitioners were “doing all they could” given the limitations of health care resources. 33, 44, 60 UP FRONT FINDINGS Women who participated in our study expressed feelings that the breast cancer service and continuum tended to emphasize “cure” over “care.” Their experiences with follow-up or the absence of it pointed out weaknesses in the cancer care system for which there appeared to be little recourse.

“After everything is done, it’s not over, right? It’s never over. Yes you’ve been signed out of the cancer centre and your treatments are done, but still there are always questions.” In the experiences of women who participated in the study, the care system’s reliance on family physicians for breast cancer follow-up seemed fraught with problems.

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“The oncologists are too busy to do follow-up with you so they sign you over to your family doctor. I had specific questions that I asked my family doctor and she couldn’t answer them. So she referred me back to the oncologist. Trying to get back to the oncologist took weeks.” In the view of our research subjects, once they moved into a “palliative” stage, there were few resources available.

“The sense comes over you that as a cancer patient you’ve already been written off. But you need to say I’m still here, I’m still beating the odds.” “You’re sort of relegated to the backburner because, after all, you’re going to die.” Both participant women and their informal caregivers described the support of social workers as accessible, warm, caring and important: “someone who doesn’t limit support,” “someone you can tell anything to so you don’t have to burden your family.” Women felt their family physicians were “ultimately responsible” for supportive care, but the reality was that “once the referral is given, it’s out of their hands.”

“You need to have specific individuals that can provide compassion and assistance. You should pay them whatever they want and have them trained that way.” “I wondered who is going to look after me if I need care. Palliative care is 40 minutes away.” “And on top of the huge void of her absence, now there’s nothing. It all comes to a screaming end. So on top of the void of her gone, there’s this huge void of any kind of social agency or anything more.”

POLICY ENVIRONMENT Cancer specialists recognize the importance of supportive care and the critical need for palliative care; however, the absence of trained personnel and escalating health care costs continue to frustrate the development of what are considered to be essential services. Canadian Strategy for Cancer Control (CSCC) Supportive care is seen as an integral component of cancer care, crucial for patients and families. Defined programs and leadership, however, are considered to be either absent, incomplete or fragmented in most Canadian cancer centres and community-based services. The strategy for improvement is to use well-established existing programs as models for programs in developmental stages. 16-17 Cancer Quality Council of Ontario (CQCO) The range of services and the collaborative partnerships required to meet the supportive care needs of cancer patients and their families are in short supply across Ontario. Services remain unevenly distributed, and most cancer programs do not have an appropriate complement of staff to meet the full range of patient needs. Pockets of excellence apparently exist and progress has been made in some settings. Significant improvements are required to provide appropriate levels of supportive care throughout Ontario. 23 STRATEGIC CHALLENGES Since supportive care is so desired “throughout the continuum,” what can be done to help realize the dream? Because women continue to suffer needlessly through terminal illness, what should be done to ensure that palliative care is more universally accessible? What more should be done to empower women living with breast cancer to “survive and survive and survive”? )(

Supportive care and palliative care were pointed out to be especially difficult to access for rural/remote residents. Rural providers reported having to source funding for their patients’ supportive care.

“I think we need to make death kinder to women.” 22

CONTINUING CARE

Up Front: New Perspectives on Breast Cancer

NEW PERSPECTIVES The Up Front study brought a new level of refinement to the efforts of the Canadian Breast Cancer Foundation and its partners on behalf of the women of Ontario. Engaging in a collaborative research effort truly found the pulse of women’s experience with breast cancer. Our survey of Ontario women who have never had breast cancer revealed that the majority are concerned and motivated to do what is necessary to protect their health. Largely, it was suggested that the lack of clarity on prevention is holding women back from achieving optimal results. Lower-income, immigrant and aboriginal women were shown to have significantly more information needs, but even so, participation and interest are far from absent. The survey also showed that screening participation was greater than expected. Women told us they would benefit from a letter prompting them for their next mammography appointment. Qualitative research with providers, informal caregivers, women who have been through treatment and those living with breast cancer served to demonstrate the health impact of a fragmented cancer care delivery system. While

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study participants expressed general satisfaction with the strictly “medical” aspects of their treatment, there was little satisfaction with the coordination of their care, communication systems, the quality of information resources and psychosocial support. The study also demonstrated that lower-income women and rural residents experience these burdens more intensely. Those who can least afford the hidden costs end up with greater financial burdens from breast cancer treatment. Reviewing recently published research has only served to underline and reinforce what the Up Front project discovered in the Ontario landscape. Thousands of women with breast cancer continue to struggle through their experiences with the cancer care system. The scan of the policy environment has shown that cancer care authorities are well aware of problems with cancer care systems. The developing regional cancer programs across Ontario offer a welcome opportunity for reform. Perhaps there has never been a better time for the proposals and suggestions of community-based cancer groups.

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PARTICIPANT RECOMMENDATIONS

Supportive Care

As part of the research process, we asked participants for their recommendations about what could be done to improve cancer care. What do Ontario women want from cancer care? Mostly, what we heard from our research participants were viable solutions that require the organizational will, creativity and resources to implement.

Support Services

Care Coordination Education of Students in Medical Fields

Supportive Practice Women felt that family doctors, surgeons and oncologists need to be educated about supportive approaches to practise as well as supportive care options for women diagnosed with breast cancer.

Participant women suggested that students in medical fields should study how to navigate cancer care systems so that they are better able to assist their patients once they are practising.

Support from “Day One”

Electronic Patient Records

Peer Support

All participants talked about the need for an electronic database in which providers could access patient records from any location.

Women stressed that “peer support” should mean somebody who has been through breast cancer.

Patient Involvement

Women suggested that someone should be assigned to each woman when diagnosed with breast cancer to act as navigator or care coordinator.

Support Groups

Women wanted to be able to sit with their team of doctors in a conference to talk about their cancer and the pros and cons of treatment options.

Women living with breast cancer strongly suggested that support groups should be made available for all women diagnosed with breast cancer as a critical component of their care.

Continuity

Homecare Support

Women stressed that supportive care services should extend from diagnosis onward.

Women felt there should be more access to practical support to take care of their homes and family responsibilities when they are too ill.

Care Teams Providers emphasized integrated cancer care teams working together to determine the patient’s care plan. Care Path Providers suggested a standardized clinical care path for breast cancer extending from screening onward. Patient Navigator All informants believed that coordination, continuity and supportive care would be strengthened by the existence of a patient navigator role. Partnerships Providers emphasized that strong partnerships between care and treatment providers across the health system would be required to realize an integrated breast cancer care system.

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Women talked about feeling isolated as they were moved from one health professional to another with little consultation.

NEW PERSPECTIVES

Workplace Support Women with breast cancer described a need for support in the workplace to ease their return after treatment. Support for Caregivers Women felt that there should be support groups for informal caregivers to allow them to dialogue with others going through the same thing. Information Needs Timeliness Women said they found it impossible to take in information or make decisions at the time of their diagnosis. They need to be introduced to someone supportive who can provide information they can later discuss.

Up Front: New Perspectives on Breast Cancer

Personal Contact

Health Care Professionals

Women felt that they needed personal contact, not just a pamphlet, at the time of their diagnosis.

Family Doctor

Targeted Material Information packages should be tailored to cultural and language groups. Treatment Options Participant women told us they needed clearer treatment options depending on the type and stage of breast cancer. Clinical Communication Spending Time with the Patient Women recognized that oncologists and surgeons are very busy, but felt that patients often need more than a 20-minute appointment to sort out their treatment. Sensitivity Training

Providers offered suggestions about how to strengthen the role of general practitioners and processes for informing them about what is happening to their patient at every step along the care process. Communication Technology Providers found Tele-health and North Network to be important ways to facilitate continuing education, coordination and communication among health care “teams,” which may be spread across different locations. Continuing Education Women felt there needs to be professional development opportunities where cancer specialists can receive updates on new developments, medications, communication skills and “how to talk to people who are dying.” )(

Participant women talked about the need for education among health professionals on how to talk to patients. Rural And Remote Residents Building Locally Building up local resource people to assist with information and support was described as a critical element of providing care and treatment in isolated communities. Increasing Services Women and caregivers in remote areas emphasized their need for locally accessible services.

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COMMUNITY CONSULTATION PROCESS Once the research findings had been compiled and synthesized, the project undertook a consultative initiative to share the results with select communities across Ontario. Women with breast cancer experience and their caregivers were invited to compare our research findings with their own experiences, provide feedback on their relevance and contribute further suggestions toward improving the system of care. Health care and social service providers were also invited, separately, to consider our research findings from their professional perspectives. Foundation volunteers and staff succeeded in hosting eight discussion forums bringing together 163 individuals in all. Consultations embracing a mix of 137 former patients and their caregivers were held in Ottawa, London, Toronto, Etobicoke, Scarborough, Sudbury, Sault Ste. Marie and Timmins. A separate series of discussions involving a total of 26 professional providers was held in Ottawa, Toronto and Sudbury. These meetings offered a structured format for a public discussion of breast cancer treatment and care experience. Participants were invited to share their own experiences and to recommend how the

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breast cancer care system could be strengthened. The format probed participant experiences with prevention, screening, diagnosis, treatment and all phases of continuing care. Systematic procedures were used to document and interpret what participants had to say. These are described in detail in the methodology section of this report. RESULTS Former patients and caregivers who attended the consultations represented a range of experiences with breast cancer, including women who were recently diagnosed, still in treatment and several years post-treatment. The content and tone of the discussions were remarkably consistent whether in northern or southern, rural or urban Ontario. Inviting women’s reflections on their experiences in breast cancer care, so we learned, seemed to touch a collective nerve. The resulting commentary tended to be dominated by experiences of “disconnect”— shock, distress, excessive anxiety, apprehension, vulnerability and isolation—associated with events occurring in women’s treatment. In general, the consultations not only corroborated our research findings, but also contributed additional

Up Front: New Perspectives on Breast Cancer

and equally poignant material. It was apparent to all who attended that women from across the province are significantly challenged by the current system of breast cancer care in Ontario. Participants were neither angry nor militant about their experiences in care, but clearly wanted to see things improve by offering their personal recommendations. The main message—sometimes heavily underlined on feedback forms—was that having breast cancer is stressful in its own right, but that the health care system makes it even more so.

the inconsistencies that most other former patients cited. Interestingly, a small proportion of participants in the consultation had encountered optimal breast cancer care. Their outlook on the health system, its providers and their own lives stood out sharply against the experiences of other participants. What could make treatment for breast cancer a “wonderful” experience? The main ingredients seemed to be what most other participants wished for: “informed” participation, “emotional support” and “timeliness.”

Community participants generally confirmed the needs identified by our qualitative research with their own experiences, but they also helped to point out more clearly how stressful being treated for breast cancer can be. They described how stress accumulates from health-system problems and disturbances over the course of treatment, as confusion and disorientation build in the absence of coordinated breast cancer care in hospital settings, poor service synchronization and lack of teamwork among providers. From experiencing booking errors to finding themselves “go betweens” among professionals, participants described how stress mounts up in having to coordinate, manage and navigate one’s own care, each step of the way, without much direction or emotional support. The general perception shared by a large majority was that the health care system is “like an assembly line,” whose providers seem “burnt out” or simply “don’t interact.”

The dominant theme of the community consultation was the experiences encountered in care that produced feelings of shock, distress, excessive anxiety, apprehension, perceived vulnerability and isolation:

Professional providers noted similar concerns, although some were surprised by the extent of “negative experience” described by former patients. A registered nurse reflected that she had previously assumed breast cancer care was easier to navigate. Providers noted various stresses and resource pressures in the health system that impact optimal care. However, most agreed that the current system of breast cancer treatment lacks sensitivity to what patients are experiencing and needs more attention to their support. These providers expressed frustration with primary care capacities, the shortage of family doctors and the weaknesses in breast cancer knowledge among those in practice. By contrast, a small minority of community participants reported experiences of “excellence” in their care, “fabulous providers” and “no problems,” all of which seemed to underline

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) communication/coordination breakdown ) diagnosis shock ) information overload ) unaided navigation ) provider knowledge gaps ) under-recognized inequities Communication/Coordination Breakdown

“My results were in for 10 days and no one signed off. It took three weeks and three cancelled appointments. That was the most stress.” “Once the diagnosis is over you have to do the work.” “They found a second cancer that would have been found far earlier if they had been talking to each other.” “My doctor went on holidays when I started radio. I was burned [out] and there was no one to talk to.” “During treatment I had cramps and asked my oncologist what to do. He said go see your GP. I said, ‘but he didn’t prescribe it [the treatment] to me, you did.’ ” As we found in qualitative research, communication linkages among providers were generally perceived by consultation participants to be weak and problematic. Professionals “not being in touch with

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each other” was commonly viewed as an apparent flaw in the care system that not only increased patients’ anxiety, but also seemed to be create communication errors that further compounded apprehension. Community participants described their experience with the “system” of breast cancer care as “disjointed,” “lacking continuity” and “riddled with gaps.” In general, these former patients expressed the view that “no one is coordinating breast cancer care in treatment centres.” Overall, their experience was one of “appointments with different people who give different messages,” with little perceived continuity and sometimes looming inconsistencies. Concerning wait times, consultation participants described the anticipation of next appointments and lab results as “the worst.” “Waiting is hard.” Yet, what made “the worst” even harder for some was when their excessive waits turned out to have arisen from simple booking errors and miscommunication among providers. Diagnosis Shock

“Getting the cancer diagnosis and your name in one sentence is a shock.” “I got the cold facts and it took five minutes.” “He handed me a form and said, ‘Well, it’s malignant. You need surgery, sign this.’ ” “The way she looked at me was as if I was going to die, like it was a death sentence.”

Information Overload

“I didn’t know anything. I was only 30.” “Every time you ask a question, it’s like you’re not supposed to.” “I got a pile of stuff. I was in shock. It’s a lot of information. I didn’t realize about important info until three weeks later when it was too late.” “I worked in oncology, and I was terrified. I didn’t want to read anything.” “During chemo, you get so much information and different drugs, you’re overwhelmed... You don’t know which questions to ask.”

“The resident oncologist walked in, said, ‘Well, the news is bad – you will probably be unconscious in two days and dead in three’ and walked out.”

“You have no questions, the doctors are so busy, so I asked if I could have another appointment and the nurses said ‘no.’”

“You can’t think or function, you’re dumb and numb.”

“It felt like you weren’t really well listened to. Primary nurses in my mind should have been doing that, but they didn’t.”

“It was only after three months posttreatment that I realized, ‘I can think now.’ ” “I find that unless a social worker has picked up on it, it [shock] just goes unnoticed.” “They treat the disease and not the woman.”

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As with our research participants, the emotional shock on the delivery of a breast cancer diagnosis was a general theme for consultation participants. Diagnosis distress was commonly reported as an unacknowledged issue affecting the whole course of breast cancer treatment and subsequent recovery. While care of the “physical body” during breast cancer treatment was perceived as satisfactory, the care of the “whole person” was generally perceived as “sorely lacking,” “impersonal,” “lacking empathy,” “like an assembly line” and at worst “inhumane.” A few participants reported that their encounter with breast cancer care took years to get over and left some wondering whether they had suffered from untreated “post-traumatic stress syndrome.”

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“After it was decided I needed chemo, no one helped me or explained anything – I had to do all my own research on the Internet.” “Nobody tells you what to expect.”

Up Front: New Perspectives on Breast Cancer

“As a non-medical person it’s very scary to make such decisions – we don’t have the necessary medical background to make such decisions on our own!” Like our research subjects, consultation participants felt that access to reliable information was critical, but often found their receptivity to it diminished by the emotional turmoil of their diagnosis. Feeling “numb and dumb,” “mind boggled,” or “like Bambi in the headlights,” patients described being unable to absorb details required to participate meaningfully in decisions about their care. With little support to interpret complex health issues —“I was told I read too much!” — consultation participants reported feeling “overloaded” and hustled through decisions they did not understand. Written information often only led to more questions and no one seemed to be available to answer them. “I didn’t know,” “no one told me” and “I had to find out on my own” were common statements about the experience. On the other hand, participants also reported feeling that their providers had withheld crucial information about important issues such as “treatment side effects,” “access to supportive care,” and the availability of services such as “reconstructive surgery with mastectomy.” Unaided Navigation

“My oncologist later gave me three choices of medication. How could I choose what to do?” “When my doctor saw the results from my mammogram he said he didn’t see anything and asked me if I could see anything myself.” As also reported by our research subjects, participants in the community consultations commonly found themselves obliged to insert themselves into the management of their own course of treatment, usually in a state of distress over the uncertainties they were experiencing at the time. Participants reported feeling angry and resentful rather than empowered by this experience: “What is the role of the doctor if they aren’t the experts?” From acting as “go betweens” among specialists to pushing for “timely” appointments, participants reported feeling forced to become “proactive,” “aggressive” and “pushy” to make their way through treatment. Some participants reflected that in hindsight they regretted their passive “compliance” or placing “so much trust in their [providers’] hands.” When hearing accounts of these experiences provider consultation participants expressed surprise, which points to an apparent conflict between professional assumptions about breast cancer care and the realities of patient experience. Provider Knowledge Gaps

“Unless you ask questions, you don’t know what you have to do next.”

“I had a green discharge from [my] nipples and my doctor said ‘stop drinking coffee.’ ”

“If people don’t know what to ask for, it doesn’t come.”

“My doctor wouldn’t give me a mammogram because he couldn’t believe that my lump was breast cancer.”

“People must be their own advocate. I caught several mistakes.” “They [providers] think you are participating.”

“I asked my doctor for a mammogram. He said ‘No, you’re only 45.’”

“If I knew then what I know now, I would have been on her case.”

“I had inflammatory breast cancer, but the doctor wasn’t on board ’cause he thought I was too young.”

“Unless I had done the research myself, talked to a whole bunch of people, made it my business to know, I would not be here today.”

“I had bad reactions to the adhesives, skin broke down, the home care people didn’t know how to treat it.”

“When you’re sick, you’re not feeling well, you don’t always have the strength to fight.”

“We didn’t know she had metastatic disease until ten days before she died.”

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“The GPs know absolutely nothing about breast cancer.” “I had to get rid of my doctor for my mental health.” “At the end of treatment, you wonder if there are standards for care.” As with our research subjects, community participants often expressed disappointment with the breast cancer knowledge of their primary providers. Several participants related stories of having to convince a family doctor to further investigate lumps or other symptoms they had found themselves. There were accounts of delayed diagnoses due to what were perceived as “inexperienced” or “misguided” providers. Some participants reported losing all confidence in their general practitioner and subsequently having to search for another family physician under conditions of doctor shortages. As with our research subjects, community participants wondered if there are standards of care for breast cancer treatment in Ontario or whether those in existence are actually being applied. Inconsistencies in treatment plans, practitioner approaches, hospital programs, and the competence of family physicians were perceived to be indicative that standards of breast cancer care are either absent, unregulated or compromised. Under-recognized Inequities As with our research subjects, consultation participants pointed out significant sources of distress that often depended on individual circumstance, but nevertheless seem poorly anticipated by the breast cancer care system: financial burdens, distance from care, and age and gender bias. Financial Burdens

“Women are coming in who can’t afford treatment because they can’t afford the drugs.” “I had not enough money or benefits and went bankrupt.” “Financial stresses are overwhelming, which doesn’t promote healing.” “The biggest issues for single women in jobs with no benefits were financial.” 30

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The unanticipated expense of breast cancer treatment—medication, nutrition supplements, wigs, prostheses, transportation, parking, house cleaning, child care and so on—was a hot topic in consultation discussions. Community participants, reflecting their common experiences, noted that all women encounter unanticipated financial burdens during treatment: “No one seems to know you will have to pay for the medications.” But they also recognized that costs are often greater for young mothers as well as for rural, northern and aboriginal women due to child care support and travel costs. Participants noted that while financial assistance was sometimes available, it was another “information” item that was either poorly communicated or never mentioned. Distance from Care

“She’s driving in a snowstorm in January to get to her radiation, she has to coordinate child care, she’s alone.” “After my surgery I was loaded up in a truck and taken home. My husband had no clue how to take care of me. I was still pretty out of it.” “There was a power outage on the day I saw my doctor and he said, ‘I think it’s negative.’ And then it was months before I saw him again, and [in fact] I had breast cancer.” “I had to go to Toronto to find out if it was a recurrence – you’re on your own.” “We don’t get the same treatment as in the south. If we need treatment we have to pay but in Toronto they have all their costs covered [sic].” As with our research subjects, consultation participants raised concerns about the quality of care in the north due to the shortage of family physicians, distance to treatment centres and the scarcity of home-care services. Northern community participants perceived, often misguidedly, that breast cancer care is inferior in the north. Their experiences with rural isolation, out-of-pocket expenses, treatment delays and lack of local services only served to underline their feelings that optimal care is compromised in northern communities.

Up Front: New Perspectives on Breast Cancer

Age and Gender Bias

“Younger women can’t even get recognition that they suspect a problem.” “The laissez-faire attitude toward women and breast cancer is sad.” “All the oncologists I saw were men and they often dismissed my concerns. But how do they know what I know, what I feel?” Simply being a woman was recognized by some consultation participants as a vulnerability in a health care system that can be “patriarchal,” “hierarchical” and “dismissive.” Some former patients felt “intimidated” or “not listened to” by male providers. Younger women spoke of struggles with getting their susceptibility to breast cancer recognized by their primary providers. Those in their 30s and 40s described having to fight to have their symptoms acknowledged and tests ordered by family doctors whose inclinations were to “wait and see.” IMPROVING BREAST CANCER CARE Given the preponderance of difficult experiences with the health care system, many participants in the consultations reported that they had felt reluctant to attend, not wishing to dredge up troubling memories and emotions. Nevertheless, once there and talking, they were eager to contribute ideas about how to make breast cancer care more supportive for women. It was clear that there was a deep desire to participate in helping to improve the system and to champion such developments. Prevention

“No doctor even wants to tell you how to prevent breast cancer because they don’t know.” “Everyone is ‘finding the cure’ not prevention.” “Messaging around preventing cancer is more likely to reduce the risk of heart disease.” “We need to know all the things that may cause breast cancer, from healthy choices to what’s in our environment.” “Sex education in high school should include breast health.” toward kinder care

Participants commonly argued that breast cancer prevention needs to be re-invented to clarify known causes and risk-reduction practices. They sent a strong message that there must be an end to the subtle “victim blaming” of current approaches, which tend to emphasize individual risk factors without reference to potential environmental risks: “Statistically I should not have breast cancer.” Participants who had had breast cancer often focused on environmental over personal links, sometimes expressing frustration with the apparent failure of their own earnest lifestyle efforts to prevent cancer. In contrast, providers focused more on expanding efforts for behavioural and lifestyle change around smoking, diet and exercise. The link between both perspectives was a common call for further research into the cause of breast cancer in order to eventually improve prevention and riskreduction strategies. Screening

“Reduce the age for mammograms.” “The earlier the better for screening.” “Mammograms are just one component.” “When the message came out that women should not do BSE, I think it was the most irrational message that could have gone out.” “We need to develop better technology to deal with the shortcomings of mammography.” “When young women go for birth control pills they should receive BSE education and symptom awareness.” “Consider self-referral of women under 30 with breast lumps—at pregnancy clinics.” Community participants expressed a common feeling that breast screening programs should begin at an earlier age than 50 and that breast self-examination (BSE) should be taught early in school programs. These views arose especially in discussions about the experiences of younger women having their symptoms dismissed or misunderstood by health care providers, leading to subsequent delays with diagnosis and treatment. Most participants strongly endorsed BSE in spite

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of research and subsequent media attention indicating it has little effect on outcomes. Women who had found their own cancer, or whose confidence in mammography had been shattered by false results, or who had been ignored by practitioners, strongly emphasized women’s continuing need to know their own bodies through BSE. In contrast, providers emphasized the need to improve mammography participation through mass marketing campaigns that could be modified to address cultural and language barriers. Supportive Care

“I have a wonderful GP. He helped me. He said, ‘It’s nothing you did or didn’t do.’ I think everyone should be told this.” “I was fortunate – met a surgeon who had a psych degree.” “I was lucky because a volunteer was available to talk to. I was freaking out.” “You should be assigned a social worker right after diagnosis.” “Instead of being handed 8 or 10 different pamphlets when diagnosed, someone should sit with the woman, answer questions, go over choices.” Most participants expressed the need for emotional support in the form of a “person” throughout the care trajectory, from the delivery of a breast cancer diagnosis onward. Women who had been through it reflected on the emotion and trauma of a breast cancer diagnosis and strongly emphasized the need for support to cope with the shock and to prepare for difficult decision making. The underlying desire, however, went far beyond wanting someone in a “provider role” to a more “supportive system” that would include empathetic personnel, access to reliable information and consistent quality of care throughout the process. Participants’ recommended elements of a postdiagnosis support program included education on “what will happen next”; the opportunity to ask questions; help navigating the care system; assistance with making difficult decisions; and

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access to people who had “been through it” to learn from their experience. Care Navigator

“The nurse met with me and gave me a binder and went through everything. I would have forgotten everything if not for the binder.” “Someone needs to tell you what to do next. This is what is missing.” “Helping women understand the pathway.” “If in those initial 48 hours, you have the ability to get information from a knowledgeable professional and have time to get your head around it, that would be an incredible asset.” “Unless you ask questions, you don’t know what you have to do next.” “Health professionals are helpful but are also the enemy – need an advocate or ‘go between’ because there is a huge level of suspicion about the medical system.” “I would sensitize the managers, telling them over and over the benefits of helping patients learn.” The wish for the ongoing support of someone to guide a patient through the whole course of treatment, answer questions and provide compassionate care was universal. Community participants argued for the “ongoing involvement” of a “care navigator,” a “buddy,” a “coach,” an “advocate” or a “mentor.” They described the navigator role as coordinating care, advocating for the patient, and providing information, direction and emotional support, adapted to individual needs. Not only did women want chart information to be transferred more efficiently between practitioners and facilities, but they wanted access to it themselves. They recognized treatment as a staged process and their need to know “what’s happening next” as having a significant impact on their levels of anxiety and stress.

Up Front: New Perspectives on Breast Cancer

Provider Education

“Not enough opportunity to reflect on findings and how to apply them to your own work.” “We are beginning to bring disciplines together, but we’re not used to working this way.” “When you work for an institution it’s often hard to stand alone because you’re caught between budgets and bottom lines.” Professional participants pondered their own difficult experiences with the breast cancer care system and desire for its improvement, sometimes echoing the concerns of former patients. They also related the formidable challenges of keeping up with research, translating findings into practice and dealing with a health care system set up in isolated silos. Nevertheless, they saw continuing education as a crucial strategy for improved care. Community participants felt strongly that there is a widespread need to enhance the breast cancer knowledge of all relevant providers and especially general practitioners. They described an urgent need for improved education on breast cancer symptoms, patient navigation and access to community support systems. Survivor Volunteers

“Women need to support women.” “An advocate doesn’t need a whole lot of knowledge. It’s basic. I could do it now.” “Right from the moment you know you should get a buddy.” Participants felt that breast cancer survivors could make a valuable contribution to more supportive breast care by acting as “buddies” during treatment and “educators” in schools and social service environments. Research Investment

“I would dearly love to see the [Canadian Breast Cancer] Foundation put more money into primary prevention, finding the cause.”

Participants commonly expressed frustration with the current state of knowledge about the cause of breast cancer and the consequent weakness of risk reduction and prevention strategies. Research into the cause of breast cancer was widely perceived to be a worthwhile investment. Health Care Policy

“In the end, there are big systemic issues that need to be addressed, and the biggest is resources.” “There is a disconnect between the experience of women and how government is reacting. We can look at our administrators in our hospitals, but it goes beyond that. The MOH [Ministry of Health] needs to recognize there is a problem here, and women want and deserve better.” Former patients felt that stronger government involvement is needed in setting and maintaining standards of care that can compete with the best available anywhere. Many felt Ontario should be setting the example for everywhere else. DISCUSSION Overall, the community consultation helped not only to corroborate much of what we learned about women’s experience in care from the research phase of the project, but also to point out the impact on individuals. Many women, possibly the majority, experience emotional distress, uncertainty and isolation in various encounters with the health care system while being treated for breast cancer. The scarcity of relevant community programs, disruptions in communication, poorly delivered diagnoses, unnecessary delays, unaided navigation, and other system gaps all seem to aggravate the emotional turmoil of having breast cancer itself. Excessive stress is quite apparently a significant side effect of breast cancer treatment in many care settings. The effect that treatment stress may be having on recovery from breast cancer, psycho-social readjustment or other health outcomes should be a topic of further investigation. )(

“We must spend more research money and social energy on breast cancer prevention.”

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ACTIVATING UP FRONT: REPORT RECOMMENDATIONS DISCUSSION Much of the evidence on women’s experience of breast cancer treatment uncovered by the Up Front project appears to be critical of the care system, especially on key points about coordination, emotional support, information, communication and education. Even so, the project found that very few women approached their participation in interviews and focus groups with anger or condemnation. In many cases, former patients were reluctant to express their views because their reflections often raised “difficult emotions.” Once talking in groups, however, research participants usually found that their private, thorny experiences were not isolated, but more or less common. Wherever the project went, the views that former patients expressed—whether in focus groups or community forums—had a high degree of concurrence. Only a small minority reported that their treatment experiences had lived up to their expectations. The majority of participants in the community consultations thought of these women as “lucky.” Women who were not part of the research process but served the project in various ways also concurred that their experiences were being voiced in Up Front research. It should be kept in mind that most of the material on the care system came from qualitative data generated by former patients’ reflections and not

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“satisfaction measures.” Because “improvements to the care system” were solicited in the research process, the resulting data tends to focus on deficiencies and gaps. Nevertheless, research participants commonly expressed their support of Canada’s public health system and sometimes named specific providers who “stuck out” for their compassion, support and even humour. Overall, it seems that these findings are not entirely different from patient satisfaction measures collected by Cancer Care Ontario’s Cancer System Quality Index. The index reports the results of more than 5,000 Ontario patients who responded to a mail survey subsequent to receiving care at participating cancer centres or hospitals in 2004 and 2005. 19 On the surface, general satisfaction based on median “overall impressions” scores appears to be in the 85–92% range, where 100% represents complete satisfaction. Women were somewhat less satisfied overall than men. Median scores on “emotional support,” however, average much lower in the 50–58% range, and “coordination– continuity of care” averages 61–71%. Obviously there is room for improvement suggested by both qualitative evidence and satisfaction measures. As with the qualitative findings, some regional differences emerge, but they appear to be small.

Up Front: New Perspectives on Breast Cancer

One seemingly large difference between Up Front research findings and recent scientific research concerns general practitioners. While there were exceptions, Up Front research respondents generally expressed disappointment with their family doctors’ helpfulness concerning breast cancer symptoms, system navigation and follow-up care. In stark contrast, a study released in 2006 involving 968 Ontario women with earlystage breast cancer suggested that women get excellent breast cancer care from their family physicians.44 The difference between what the former patients interviewed by Up Front have said and what the 2006 study reported can be found in the measures. The study considered only “serious clinical events” and “death” as measures of adverse patient experience. While women may feel somewhat comforted by such results, they bear little resemblance to the confidence women say they have in their family practitioners. RECOMMENDATIONS The Up Front project undertook a multi-year research inquiry to describe women’s experiences with breast cancer, aiming to inform future collaborative efforts to improve Ontario’s cancer care system. The study revealed that many women experience significant daily life challenges and treatment-related distress over the course of breast cancer care. The insights and advice of study participants strongly suggest that enhanced care services could benefit many breast cancer patients. Further research is warranted to investigate the potential health outcomes and psycho-social benefits of enhanced programs, practices and services. The following recommendations respond directly to service challenges identified by the participants of the Up Front project. While the inquiry’s methodology served to outline what women find problematic about cancer care services, further analysis may be required to identify and evaluate potential solutions. With an overall aim to reduce the burden of breast cancer on the health care system and its patients, these recommendations may serve as a useful starting point for discussion and action amongst the following key stakeholders:

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) Up Front project partners: ) Canadian Breast Cancer Foundation - Ontario Chapter ) Willow Breast Cancer Support Canada ) Canadian Breast Cancer Network ) Ontario Breast Screening Program, Cancer Care Ontario ) Princess Margaret Hospital Foundation ) Ontario Ministry of Health and Long-Term Care ) Ontario Ministry of Health Promotion ) Cancer Care Ontario ) breast cancer patients and their personal care providers ) health care providers and their professional associations ) community breast cancer and cancer organizations ) health care researchers

Specific recommendations are provided in the following areas: 1) primary prevention 2) breast health education 3) health care provider education 4) screening/mammography 5) integrated care 6) patient navigation 7) supportive care 8) financial supports 9) wait times 10) post-treatment care 11) advocacy

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1. Primary Prevention The Canadian Breast Cancer Foundation - Ontario Chapter should maintain primary prevention as a priority for research funding. Strategies should be undertaken to promote the availability of funding for prevention research and to increase the number of scientists working on prevention research. The results of research into the causes and risk factors associated with breast cancer should be more widely disseminated to help fill public information gaps. 2. Breast Health Education Strategies should be implemented to develop and deliver improved breast health and breast cancer messages addressing women’s information needs and misconceptions. Breast cancer signs and symptoms, risk reduction and screening mammography should be priorities. Message strategies should move beyond awareness to promote improved breast health practices and informed decision making. Information about breast health and screening mammography should also be made available for women younger and older than the age range recommended for screening in Ontario. Breast health and breast cancer information should be tailored to specific age groups to highlight age-related breast cancer risks and risk reduction practices. Strategies should include educating health care providers about breast cancer differences in younger, middle-aged and older women. Breast health content should be incorporated into current health education curriculum in schools. 3. Health Care Provider Education A strategy should be implemented to increase the knowledge and capacities of all relevant health care providers to more effectively respond to patient needs across the continuum of breast cancer care. Supportive care practices and knowledge about the occurrence of breast cancer in younger women should be a priority. Programs should be implemented at different stages of provider training, including relevant post-secondary and continuing education. Best practice models should be reviewed and applied. 4. Breast Cancer Screening Mammography To help reduce breast cancer mortality among women aged 50–69, strategies should be undertaken to increase screening mammography. Currently

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unscreened and under-screened women should be made a priority in order to address whatever barriers they may face in accessing screening services. Specific attention should be given to women of aboriginal and other ethno-cultural minorities and remote geographical communities, as well as to those lacking primary care physicians. Policies of the Ministry of Health and Long-term Care should be introduced to bring all screening mammography services into the Ontario Breast Screening Program. All patients should have the benefit of a comprehensive program that is rigorously evaluated; targets individual women for participation and recall; minimizes wait times between diagnosis and treatment; and provides navigation through cancer care services for the newly diagnosed. The Ministry of Health and Long-term Care should implement policies to allow women aged 40–49 access to screening mammography in the Ontario Breast Screening Program. The increasing number of women in this age group who currently access mammography services outside the OBSP should have the same standard of care as women who screen within the OBSP. Screening mammography for the 40–49 age cohort would align Ontario’s policy with most other provinces and territories in Canada. 5. Integrated Care A comprehensive model of integrated care1 should be broadly implemented across the health care system to alleviate service fragmentation and enhance the delivery of accessible, coordinated and efficient breast cancer care. A well-integrated model of breast cancer care should span prevention, early detection, diagnosis, treatment, supportive care, post-treatment care and palliative care. Aiming to increase patient satisfaction with care services, the desired model should be flexible enough to respond to specific regional circumstances while coordinating local hospitals, health care providers and related community networks. The implementation of integrated care should include the development of benchmarks that reflect breast cancer patient perspectives and expectations. Progress should be monitored and evaluated. Practices should be reviewed to identify the most effective strategies and technologies for efficient exchange of relevant cancer care information.

Up Front: New Perspectives on Breast Cancer

6. Patient Navigation A patient navigation strategy should be designed and implemented to facilitate access to care programs while aiming to improve service coordination and the perceived continuity of breast cancer treatment. The resulting strategy should be based upon a review of existing models, best practices and cost-benefit analysis. The development process should evaluate models with a potential to be broadly implemented across the health care system. Model programs should be piloted in multiple settings throughout Ontario to identify and address specific regional issues. 7. Supportive Care Fully integrated supportive care2 services should be made available to all breast cancer patients and their families. Supportive care models should be further developed and services should be broadly implemented with monitored standards and outcome evaluation. Provider education should be developed to foster a supportive care ethic in all cancer care services. Strategies should be developed to facilitate access to support services available in cancer care and community settings for patients and their families. Patients should be informed of supportive care services early in their trajectory, ensuring access at the time of their cancer diagnosis. 8. Financial Supports Since expenses associated with breast cancer treatment and care affect all women, a strategy should be undertaken to increase awareness of costs that are not covered in government health care programs. Many patients are unaware of additional expenses associated with cancer care and thus find themselves ill-prepared to address financial burdens. A comprehensive screening process should be widely implemented to identify patients needing financial assistance and to connect them to available resources early in their treatment. Healthcare providers should be educated to inquire about financial needs and to make appropriate referrals as necessary. Information about available financial supports should be provided when it is of the most use to patients: i.e., after a treatment plan has been established and prior to chemotherapy and radiation.

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Further research on the financial burdens associated with breast cancer care should be undertaken in areas where knowledge remains limited, including costs associated with treatment, medication, travel, and childcare. Advocacy to address the financial impact of breast cancer on patients should be undertaken and encompass policy and practices related to income security, private insurance plans and governmentfunded financial assistance. 9. Wait times Continued efforts should be made to further reduce wait times to ensure that delays in care services do not add to the burden of disease. Government should continue to address the barriers that impact on timely care by continuing to invest in care facilities, regional cancer centres, new technologies, equipment, and human resources. Regional inequities in quality of care and access to services should be addressed. 10. Post-treatment care Post-treatment care3 issues should be recognized and addressed within cancer care services to effectively respond to breast cancer patient needs. Strategies should be implemented to improve information and services for post-treatment care. Health care providers should be further educated about post-treatment care needs and how to communicate about issues such as drug side effects, depression and lymphedema. 11. Advocacy Partnerships should be developed and supported to leverage policy and program changes that will lead to more coordinated, integrated and equitable care, responsive to the needs of breast cancer patients. )( 1 Integrated care emphasizes the continuity of patient experience throughout the system of care, aiming to improve equitable access, patient satisfaction, effectiveness and efficiency across all segments of the population. 42 2

Supportive care is the provision of services to meet the physical, informational, emotional, psychological, social, spiritual and practical needs of women diagnosed with breast cancer during the pre-diagnostic, diagnostic, treatment and follow-up care phases, encompassing issues of survivorship, palliative care and bereavement. 16

3

Post-treatment care is the provision of services to address physical and psycho-social needs that may arise following the completion of formal treatment for breast cancer. Post-treatment issues include physical side effects of treatment, such as lymphedema, or the need for emotional support while transitioning from active treatment to monitoring. Such physical and emotional concerns may arise in the days or weeks immediately following treatment, or later, during the first year after treatment and beyond. 29

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45. Kasman, N., Woodward, G., Ardal, S. (2003) Ontario Region and Public Health Unit Mammography Screening Rates: Administrative Versus Survey Methods. http://www.healthinformation.on.ca/reports/Central%20East%20HIU%5C2003%5C Mammography%20screening%20rates%20%20administrative%20vs%20survey%20methods.pdf 46. Mackillop, W., et al. (1997) Socioeconomic status and cancer survival in Ontario. Journal of Clinical Oncology. Apr;15(4) 1690-9. 47. Metcalfe, K. A., Liede, A., Hoodfar, E., Scott, A., Foulkes, W. D., & Narod, S. A. (2000). An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling. J Med Genet, 37(11), 866-874. 48. Mitchell, T., & Nielsen, E. (2003) Living life to the limits: Dragon boaters and breast cancer. Canadian Woman Studies, 20(3), 50-57. 49. OBCCRI (2004). Coming Out About Lesbians and Breast Cancer: Summary Research Report, The Lesbians and Breast Cancer Project, April 2004. 50. OBCCRI (2003). ‘Below our Notice?’–The Struggles of Low Income Women Living with Breast Cancer. Report summary in Women’s Health Matters, Sunnybrook and Women’s College Health Sciences Centre, 2003. 51. OBCCRI (2003). ‘Nothing fit me’: The information and support needs of Canadian young women with breast cancer: Canadian Breast Cancer Network & Ontario Breast Cancer Community Research Initiative. 52. OBCCRI (2001). Perspectives of Rural Women with Breast Cancer. Toronto: Canadian Breast Cancer Network. 53. OBCIEP (2004). Breast Cancer Information Dissemination Strategies - Finding Out What Works. Report Summary by the Ontario Breast Cancer Information Exchange Project, December, 2004. 54. Olivotto, I. A., Borugian, M. J., Kan, L., Harris, S. R., Rousseau, E. J., Thorne, S. E., Vestrup, J. A., Wright, C. J., Coldman, A. J., & Hislop, T. G. (2001). Improving the time to diagnosis after an abnormal screening mammogram. Can J Public Health, 92(5), 366-371. 55. Olivotto, I. A., Kan, L., & King, S. (2000). Waiting for a diagnosis after an abnormal screening mammogram. SMPBC diagnostic process workgroup. Screening Mammography Program of British Columbia. Can J Public Health, 91(2), 113-117. 56. Phillips, K. A., Warner, E., Meschino, W. S., Hunter, J., Abdolell, M., Glendon, G., Andrulis, I. L., & Goodwin, P. J. (2000). Perceptions of Ashkenazi Jewish breast cancer patients on genetic testing for mutations in BRCA1 and BRCA2. Clin Genet, 57(5), 376-383. 57. Rayson, D., Chiasson, D. & Dewar, R. (2004). Elapsed time from breast cancer detection to first adjuvant therapy in a Canadian province, 1999-2000. 58. Robertson, A. (2000). Embodying risk, embodying political rationality: Women’s accounts of risks for breast cancer. Health, Risk and Society, 2(2), 219-235. 59. Sinding, C. (2003a). ‘Because you know there’s an end to it’: Caring for a relative or friend with advanced breast cancer. Palliative and Supportive Care, 1, 153-163. 60. Sinding, C. (2003b). Disarmed complaints: unpacking satisfaction with end-of-life care. Social Science & Medicine, 57(8), 1375-1385. 61. Stamler, L., Thomas, B., & Lafreniere, K. (2000). Working women identify influences and obstacles to breast health practices. Oncology Nursing Forum, 27(5), 835-841. 62. Steven, D., Fitch, M., Dhaliwal, H., Kirk-Gardner, R., Sevean, P., Jamieson, J., & Woodbeck, H. (2004). Knowledge, attitudes, beliefs, and practices regarding breast and cervical cancer screening in selected ethnocultural groups in Northwestern Ontario. Oncology Nursing Forum, 31(2), 305-311. 63. Stewart, D. E., Cheung, A. M., Duff, S., Wong, F., McQuestion, M., Cheng, T., Purdy, L., & Bunston, T. (2001). Attributions of cause and recurrence in long-term breast cancer survivors. Psycho-Oncology, 10(2), 179-183. 64. Tatemichi, S., Miedema, B., & Leighton, S. (2002). Breast cancer screening. First Nations communities in New Brunswick. Can Family Physician, 48, 1084-1089. 65. WBCSRS (2000). Hopes and needs: A profile of the needs of Francophone women with breast cancer and the resources available to them: Willow Breast Cancer Support and Resource Services. 66. Williams, P. (2004). Breast Cancer: landscape of an illness. Toronto: Penguin Canada. 67. Zepf, W. (2004). Long-term sequelae of breast cancer treatment. American Family Physician, April 1.

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The Up Front Partnership: working together to make a difference