Cancer Survivorship: A New Subspecialty

Jennifer Klemp, PhD, MPH Assistant Professor Director, Cancer Survivorship CEO/Founder, Cancer Survivorship Training University of Kansas Cancer Center August 2013

Overview This course will healthcare providers: • Demands of Cancer Survivorship – Who, What, When, Where, Why, How • Recognize the majority of cancer survivors experience longterm and late effects of their treatment • Understand how Survivorship Care can promote and contribute to long-term health and integration into the EHR • Delivering Multidisciplinary Survivorship Care: What does it look like? • Common Concerns & Research Targets

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“Who” is a Cancer Survivor? A cancer survivor is anyone who has been diagnosed with cancer – from the time of diagnosis and for the balance of his or her life. NCCN: National Coalition for Cancer Survivorship http://www.canceradvocacy.org/ 3

Cancer Control Continuum Diagnosis Early Detection

Prevention • Diet/Exercise • Sun Exposure • Alcohol

• Tobacco Control • Chemoprevention

•Cancer screening Pap test Mammogram PSA/DRE Fecal occult blood test Colonoscopy •Awareness of cancer risk, signs, symptoms

• Oncology/ surgery consultation

• Tumor staging

• Informed Decision Making

Treatment • Chemotherapy • Surgery

• Patient counseling & decision making

• Clinical trials

Survivorship • Long-term follow-up/ surveillance • Manage lateeffects

End of Life

• Symptom management

• Rehabilitation

• Support patient & family

• Coping

• Hospice

• Psychosocial

• Health promotion

• Informed decision making

• Radiation

• Maintenance therapy

• Prevention • Palliative Care

Phases of Cancer Care Adapted from: http://cancercontrol.cancer.gov/od/continuum.html. Accessed July 25, 2011.

“Who”: Growing Number of Cancer Survivors? Estimated 18 million by 2020

http://www.cancerprogress.net/overview.html

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“Who”: Age of Cancer Survivors Estimated Number of Persons Alive in the U.S. Diagnosed With Cancer by Current Age* *(Invasive/1st Primary Cases Only, N=11.4M survivors)

“Who”: Estimated Number of Cancer Survivors in the U.S. based on November 2009 SEER data by Site *(Invasive/1st Primary Cases Only, N=11.4M survivors)

“Who” Delivers Survivorship Care Survivorship care is by nature multidisciplinary and ideally provided using a team approach Specialty/Pri mary Care

Mental Health Physical Therapy/ Occupational Therapy

Pain

Management

Neurology/ Neuropsychology

Pulmonary

Gynecology/Urology

Endocrinology

Sexual Health/Fertility Cardiology

IOM, 2006 8

“What”: Survivorship Care is a Dynamic Process Physical/Medical

Social/Well Being

Psychosocial

Existential/Spiritual

A multidisciplinary approach to survivorship care considers a providers’ expertise and aims to meet each survivors unique physical, social, psychosocial and spiritual needs

“What”: Manage the Physical Consequences of Cancer Treatment Long-term Side Effects

Late Side Effects

• Chemotherapy

• Chemotherapy

Fatigue, endocrine symptoms, infertility, neuropathy, cognitive function, heart, kidney, and liver problems

• Surgery Scars, chronic pain

• Immunotherapy Rash/Dermatologic issues, endocrine/hypo-pituitary, GI (diarrhea, inflammatory bowel)

• Radiation Therapy

– 2nd primary cancers, cataracts, infertility, liver problems, lung disease, osteoporosis/endocrine issues, cognitive function, weight gain

• Surgery – Lymphedema, scar tissue

• Radiation Therapy – Cataracts, heart, lung, intestinal and thyroid problems, second primary cancers, memory problems, cavities and tooth decay

Fatigue, skin sensitivity 10

“What”: Manage the Psychosocial Late and Long-Term Effects of Cancer Treatment • Psychological – Depression, anxiety (fear of recurrence), uncertainty, isolation, altered body image

• Social – Changes in interpersonal relationships, concerns regarding health or life insurance, job loss, return to school, financial burden

• Existential and spiritual issues – Sense of purpose or meaning, appreciation of life 11

“When”: Across the Continuum of Care- Modified Cancer Care Trajectory Cancer-free survival Delivery of survivorship education & preventive strategies

Start Here

Recurrence/ second cancer Managed chronic or intermittent disease

Treatment with intent to cure

Diagnosis and staging

Delivery of post-treatment survivorship care

Treatment failure

Delivery of survivorship care in the advanced cancer setting

Palliative treatment Death

Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Translation. Available at http://www.nap.edu/catalog.php?record_id=11468. Accessed July 25, 2011.

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“Where” Do Cancer Survivorship Receive their Care? • Multidisciplinary – physician, nurse practitioner, psychologist, social worker

• Disease-specific – Breast, prostate • Consultative service – One-time comprehensive visit – Treatment Summary and Care Plan • Integrated Care Model – Usually a NP works within the team – Ongoing care

• Shared Care Model – Collaboration with primary care

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“Where” Elements of Shared Care Delivery • Care shared by two or more clinicians of different specialties (ie. Oncology and Primary Care)

• Who does what: understanding of roles and responsible of care • Knowledge transfer – Treatment summary and care plan  

Specific information on disease General information about late & long-term effects

• Communication channels – Contact information for oncology physicians and nurses

• Active patient involvement – Encouraged to contact primary care physician with problems – Provided with the information given to the primary care physician Renders et al: Diabet Med 20:846-852, 2003; Jones et al: Am J Kidney Dis 47: 103-114, 2006 Neilsen et al: Qual Saf Health Care 12(4) 263-272.

“Why”: Recommended by National Experts The Institute of Medicine report on cancer survivorship states:    

Survivorship care is a neglected phase of the cancer care trajectory Cancer recurrence, second cancers, and treatment late effects concern survivors Few guidelines are available for follow-up care Providers lack education and training

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Why: Addressing Barriers to Quality Care • Fragmented, poorly coordinated care • Absence of locus of control or central responsibility for follow-up care • Poor communication – Among clinicians – Between clinicians and patients

• Lack of guidance on medical & psychological tests, exams, follow-up • Provider education – Cancer Care Team – Primary Care – Expanding role  

Midlevel providers Nurses

• Inadequate reimbursement: prevention & survivorship are expensive • Limited experience on the best way to deliver quality care – Models of providing care are currently being evaluated & include: 

Shared-care model: services provided by specialty & primary care clinicians  Clinician led model (MD, PhD, NP, PA)  Specialized multidisciplinary survivorship clinic

– Will depend on resources available and clinical expertise 16

Example: Practice Guidelines NCCN Survivorship Version 1.2013 • Anxiety and Depression • Cognitive Function

• Exercise • Immunizations and Infections

• Fatigue • Pain • Sexual Function

These guidelines are designed to provide a framework for general survivorship care and management and are not intended to provide specific guidelines on the surveillance and follow-up requirement for a survivor’s primary care.

• Sleep Disorders www.nccn.org Accessed April 15, 2013

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Why: National Standards QOPI –Initiatives Survivorship Quality Indicators in audit regarding survivorship: •Chemotherapy treatment summary provided to patient within 3 months of chemotherapy end. •Chemotherapy treatment summary provided or communicated to practitioner(s) within 3 months of chemotherapy end. •Chemotherapy treatment summary process completed within 3 months of chemotherapy end.

Why: National Standards for Survivorship Care Plans by 2015 •The Survivorship Care Plan is prepared by the principal providers and given to each cancer patient upon completion of treatment. •The Survivorship Care Plan contains a record of care received, important disease characteristics, and a written follow-up care plan incorporating available and recognized evidence-based standards

“How”: Survivorship “Chronic” Care Model Community Resources & Policies Non-profits, advocacy groups Wellness communities Government agencies

Self Management & Decision Support

Health System

Delivery System Design Cancer Survivorship Care

Clinical Information Systems EHR, Care Plan Informed Activated Patient

Productive Interactions

Prepared Proactive Providers

Functional & Clinical Outcomes Adapted from: http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2. Accessed July 25, 2011.

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“How”: Patient Centered Survivorship Care Community Resources/A dvocates SelfManagement

Health Care Team

Survivor

Survivors who partner their care between self-management, community resources and their health care team are often empowered to approach their care in a proactive manner.

“How”: Elements of Cancer Survivorship Post-Treatment Care • Prevention: of new cancers & other late effects of treatment; compliance with long-term therapy • Surveillance: for cancer recurrence or 2nd cancers; evaluate new symptoms – screen for complications from cancer diagnosis & Tx

• Intervention: for consequences of cancer Rx – manage complications from cancer diagnosis & Tx

• Coordination: between specialists & primary care providers to ensure health needs are met Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Translation. Available at http://www.nap.edu/catalog.php?record_id=11468. Accessed July 25, 2011.

Essential Elements of Survivorship Care

Earle & Ganz, JCO, Vol 30, Num 30, 2012

“How”: Components of a Survivorship Care Plan • Description of diagnosis • Summary of treatment – Therapies – Contact information for each key provider – MAJOR complications experienced

• Individual risk for late effects, second cancers – Risk assessment and management strategies: Give orally & in writing – Cancer risk – Genetic Counseling for appropriate patients.

• Long-term monitoring for late effects – Ongoing “To Do” List:  Lifestyle strategies, adherence to oral therapies, etc…

Jacobs, L. Developing Models of Care for Adult Cancer Survivors.2006.

EPIC Treatment Summary and Survivorship Care Plan Template Highlights: • EPIC 2012 (enhanced workflow with EPIC 2014) • @___@ fields will auto-fill • MUST use the problems list • Data can be manually entered or smart text • Functionality lost for version 2010 users is limited to discrete data points • Meaningful use: • Printed and/or • Included in MyChart • Templates in prodution: • General (customizable) • Breast • GI • GU • Lung • Adult Survivors of Childhood Cancers

“How”: Barriers to Post-Treatment Survivorship Care Planning • How to implement a survivorship care plan?    

Templates available Time consuming No/lack of reimbursement Not easily configured with medical records

• What will we do with the plan? – Will it really be used??? – JCO Dec, 2011: did not improve patient reported outcomes – JOP Jan, 2012: not ready for prime time

• Unrealistic demands on limited staff

Grunfield et al., Evaluating Survivorship Care Plans: Results of a Randomized, Clinical Trial of Patients With Breast Cancer, JCO Dec 2011. 28

How: Barriers to the Delivery of PostTreatment Survivorship Care Limited experience on the best way to deliver quality care – Models of providing care are currently being evaluated – Will depend on resources available and clinical expertise  PCP’s are not prepared  Oncologist want to maintain control & do not communicate  Survivors are in limbo- who does what?  Need ongoing professional education to bridge the gap between oncology, McCabe, JCO: 2013 specialty and primary care Grunfeld , JCO; 2006, 2011 Cheung, JCO; 2009, 2010 Del Giudice, JCO; 2009 Nekhlyudov, JCO; 2009

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Opportunities for Continuing Education: Survivorship Care Training Web/Mobile Training Program •

Cancer Survivorship Training for Healthcare Professionals • CE and content matter expert developed curriculum www.cancersurvivorshiptraining.com

“How” Does KUMC/KUCC Deliver Survivorship Care?

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Access to Services Shortly After Diagnosis Fertility Preservation Consult

Cancer Genetics Consult

Clinical Trials

Survivorship Care

•Nutrition Consult •Exercise Evaluation

Quality of Life

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Examples of Post-Treatment Care Diet and Exercise Interventions

Cancer Rehab Clinical Trials

Survivorship Care

Quality of Life

CardioOncology

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• Academic Medical Center & Hospital • 8 Community Locations • Midwest Cancer Alliance• Survivorship Clinic in Hays, KS

“A Modern Family”

Example: Prevention At Both Ends of the Cancer Continuum Breast Cancer Prevention Center

Breast Imaging & Treatment

Early Detection

Prevention • Diet/Exercise • Sun Exposure • Alcohol • Tobacco Control • Chemoprevention

•Cancer screening Pap test Mammogram Fecal occult blood test Colonoscopy Prostatespecific antigen/Digital rectal exam •Awareness of cancer risk, signs, symptoms

Diagnosis

Survivorship

Treatment

• Long-term follow-up/ surveillance

• Oncology/ surgery consultation

• Chemotherapy

• Tumor staging

• Radiation

• Patient counseling & decision making

• Symptom management

• Rehabilitation

• Psychosocial care

• Health promotion

• Clinical trials

• Surgery

• Manage lateeffects

• Coping

• Prevention

•Informed decision making

Continuum Adapted from: http://cancercontrol.cancer.gov/od/continuum.html. Accessed July 25, 2011.

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Access to Empirically Driven Services & Clinical Research • Follow-up clinic for patients >3 years from diagnosis • Monitor risk of breast & related cancers • Reproductive health (fertility) & sexuality • Cardiac risk & evaluation

• Endocrine/menopausal symptoms • Psychosocial/cognitive function • Genetic counseling and testing • Weight management: diet & exercise • Cancer Rehab/PT 36

What Trends Do We See in First 262 Patients in BrCa Survivorship Clinic? • Median age = 58 (34-86) • 88% = Stage 1 & 2 BrCa

• 70% were ER+ • 49% were premenopausal at diagnosis – Only 4% are premenopausal at entry into the Survivorship clinic • Average Weight Gain: 5 pounds – Baseline BMI at diagnosis: 25.79 – BMI at time of 1st Survivorship Visit: 27.38 • Median # of minutes of exercise/week = 60-120 Klemp JR, Smith AK, Ranallo L, Godbey D, Khan QK, Fabian CJ. Baseline characteristics of women initiating follow-up care in a newly developed breast cancer survivorship center. Cancer Res. 69, 2009.

KUMC Breast Cancer Survivorship Center n=262 • Menopausal Symptoms: – 58% Hot Flashes – 56% Vaginal Dryness – 46% NOT sexually active • 92% had undergone a bone density analysis; 50% of these women had low bone density and were on a bisphosphonate • A sizable proportion are not getting regular women’s health screening tests from PCPs. • Quality of life continues to be negatively impacted. Patients report an interest in Energy Balance, Menopausal Symptom Management, and concern over Heart and Bone Health

Examples of Common Concerns & Survivorship Research Targets • Long-term impact of cancer and its treatment – CVD risk • Diet and exercise – Weight gain – Loss of lean muscle

• Adherence with long-term therapy – Side effects (High Dose Vitamin D) – Cost • Quality of life – Cognitive dysfunction – Fatigue – Distress – Depression • Sexual health

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Ultimate Goal

“Being cancer-free is not the same as being free of cancer” Julia Rowland, PhD Director, NCI Office of Cancer Survivorship

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Resources • IOM: Lost in Transition report from 2005 • IOM: Implementing the Survivorship Care Planning, Workshop Report, 2006 • JCO Special Review Issue: Cancer Survivorship, November 10, 2006

• M. Feuerstein (ed.) Handbook of Cancer Survivorship, Springer, 2007 • Journal of Cancer Survivorship: New in 2007 • P.Ganz (ed.) Cancer Survivorship: Today and Tomorrow, Springer, 2007 • www.cancersurvivorshiptraining.com 42

EXTRA SLIDES Survivorship Research

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Common Concerns: Weight Control • Unintentional weight gain or weight loss can be common in cancer survivors

• In the US, obesity is an epidemic and a well established risk factor for some cancers (ie: breast, colon, GYN) – Being overweight or obese can increase risk for cancer recurrence – Also, a worse prognosis compared to those with a normal body weight

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Weight Control • Recommendations include: – Achieve & maintain a healthy weight – Balance caloric intake with physical activity – Engage in at least 30 minutes of moderate to vigorous physical activity most days of the week – Eat 5 or more fruits & vegetables per day – Limit consumption of alcohol and red meats – Choose whole grains

Doyle C, et al. Cancer J Clin. 2006;56:323-353.

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Benefits of Physical Activity in Breast Cancer Survivors • Quality of life – Exercise after a diagnosis of cancer:       

Helps with weight management Decreases CVD risk Reduces fatigue Elevates mood Reduces stress Improves sleep Improves fitness

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Overweight and obese postmenopausal women have a 30-50% increased risk of breast cancer and have a shorter recurrence-free & decrease in overall survival • 2010 US Incidence: 33% obese, 40% of adults obese – 60-70% of women with breast cancer are overweight at diagnosis

• Etiology Risk: Increased hormones and growth factorsincreases breast cancer risk – 20% reported gaining 22-44 kg post treatment

• Prevent Obesity – Diet and exercise

• Treat Obesity – Diet, exercise, drugs, bariatric surgery Dawood S, et al. Clin Cancer Res. 2008;14:1718-1725.

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Weight, Recurrence, & Survival in Early-Stage Breast Cancer

Goodwin PJ, et al, J Clin Oncol. 2002;20:42-51.

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Weight Gain Most Often in Premenopausal Women Undergoing Chemotherapy • Sarcopenic: loss of lean muscle mass plus increase in fat mass

• Apparent within 3-6 months of diagnosis • Difficult to lose

• Associated with increased levels of insulin, cytokines, adipokines, and estrogen

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Develop and Test a Structured Diet & Exercise Program for Breast Cancer Survivors

Research funded by Back in the Swing and the NIH BIRCWH K-12 Research in Women’s Health 50

Breast Cancer Risk Biomarkers and Energy Balance in Post-Menopausal Breast Cancer Survivors Breast Cancer Survivors, n=52 BMI >25-45 kg/m2 Pre-Test Assessment • Body Composition • Blood Work • Quality of life Surveys

6-Month Energy Balance Intervention Structured diet & exercise program targeted to Breast Cancer Survivors Post-Test Assessment • Body composition • Blood work • Quality of life surveys 51

Solution: Structured Diet & Exercise Program “Energy Balance” • Calorie controlled (1200-1600 cal/day) • Exercise – Aerobic – Resistance training

• Accountability • Group format

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Participant Characteristics & Weight Loss, n=52 • Median age = 51 • Median time since diagnosis: 4.25 yrs • Current anti-hormone therapy = 65% • Menopausal status at diagnosis: 62% pre-menopausal At Diagnosis

PrePostIntervention Intervention

Change from Pre- to PostIntervention

Weight (lbs)

187.9

202

178.3

↓23.6 lbs (12% of the starting weight)

BMI (kg/m2)

31.2

32.6

28.2

↓13.5%

Weight post-intervention was less than at diagnosis Klemp JR, et al. J Womens Health. 2010;19:1788. Abstract P-34.

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Increase in Minutes of Exercise Per Week

Exercise minutes per week

PreIntervention

PostChange from Intervention Pre- to PostIntervention

60

227

↑ 4X

• Exercise minutes included cardiovascular, planned exercise • A certified cancer trainer instructed participants on resistance training exercises Klemp JR, et al. J Womens Health. 2010;19:1788. Abstract P-34.

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Common Concerns: Cardiovascular Disease • 4-fold increase in clinical CVD in women treated for breast cancer – 2% at 10 years and 12% at 25 years • Heart disease is the 2nd most common cause of death in women diagnosed with breast cancer • 80% of breast cancer survivors had a predicted CVD risk that was equal to or greater than the estimated breast cancer recurrence risk • Poor fitness level increases mortality from BrCa by 3fold Schmitz & Carver et al., . (2013). 1-6. Patnaik et al., (2011). Breast Cancer Res, 13(3), R64. Bardia et al., BrCa Res & Tx, 2012 Peel, Medicine & Science in Sports & Exercise, 2009

Exercise Intensity To Improve CR Function in Combination with Weight Loss Breast Cancer Survivors • 3mo-3 yrs from Diagnosis • > 5 nodes removed • BMI >25

Baseline Measures CPET Fasting Blood Draw Body Composition & Anthropometrics Arm volume & measurements Questionnaires Slow Progressive Weight Training 2x/week for 4 weeks Behavioral Weight Control IT: Interval Training increase exercise intensity

13 weeks

Behavioral Weight Control MCT: Moderate Continuous Training

Repeated Measures CPET Fasting Blood Draw Body Composition & Anthropometrics Arm volume & measurements Questionnaires

Resistance Training Powerblocks Garmin Heart Rate Monitor

Baseline Participant Characteristics by Exercise Group

Klemp JR, Burnett D, Porter C, Schmitz KJ, Kluding P, Fabian CJ. J of Women's Health. October 2012, 21(10): 985-1013. Burnett D, Klemp JR, Porter C, Schmitz KJ, Fabian C, Kluding P. Cancer Research December 17, 2012 72:P2-1117

Examples of standard and interval exercise training sessions Time = 35 minutes

Warm up /Cool Down 60-75 % max HR Zone 1: 60-85% Maximal HR Zone 2: 85-95% Maximal HR

Burnett 2013

Results

Klemp JR, Burnett D, Porter C, Schmitz KJ, Kluding P, Fabian CJ. J of Women's Health. October 2012, 21(10): 985-1013. Burnett D, Klemp JR, Porter C, Schmitz KJ, Fabian C, Kluding P. Cancer Research December 17, 2012 72:P2-11-17.

Study Conclusions • Decrease in insulin  Between Group Differences Approaching Significance • Resulted in 65% (Standard Exercise) & 69% (Interval Exercise), individual adherence with weekly cardiovascular exercise goal • Resulted in significant changes in VO2max  Graded intensity exercise group experienced significantly greater improvements • Home-based exercise: convenient & practical • Education and safety are essential to avoid adverse events  NCCN 2013 Survivorship Guidelines: Exercise – Risk Stratify: Low, Moderate, High, Avoid PA

Ultimate Goal

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