Massachusetts Lyme Disease Needs Assessment

Massachusetts Lyme Disease Needs Assessment FINAL REPORT Submitted To: Massachusetts Department of Public Health Bureau of Communicable Disease Contr...
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Massachusetts Lyme Disease Needs Assessment FINAL REPORT

Submitted To: Massachusetts Department of Public Health Bureau of Communicable Disease Control State Laboratory Institute Attn: Catherine Brown, DVM, MSc, MPH 305 South Street, 5th Floor Jamaica Plain, MA 02130 [email protected] September 2008

Submitted by: JSI Research and Training Institute, Inc. 44 Farnsworth Street Boston, MA 02210

Massachusetts Lyme Disease Needs Assessment

Table of Contents JSI Research and Training Institute Team………………………………………………………………….2 Executive Summary………………………………………………………………………………………...3 Background and Purpose………………………………………………………………………...................9 Methods……………………………………………………………………………………………………11 Overview of Approach……………………………………………………………………………..5 Literature Review…………………………………………………………….12 Physician Survey……………………………………………………………..12 Consumer Focus Groups……………………………………………………..15 Key Informant Interviews with Physicians, Consumer Advocates, and Other Key Stakeholders………………………………….... 17 Results……………………………………………………………………………………………………..18 Literature Review…………………………………………………………………… 18 Physician Survey……………………………………………………………………. 19 Consumer Focus Groups……………………………………………………………..44 Physician Key Informant Interviews………………………………………………...53 Conclusions and Recommendations………………………………………………………………………58 Consumer Education, Awareness, and Prevention………………………………….58 Physician Education and Training…………………………………………………..62 Physician Reporting of Cases to the Commonwealth……………………………….68 Further Research/Next Steps………………………………………………………………………………70 Appendices Literature Review Findings…………………………………………………………………..A-1 Data Collection Tools..………………………………………………………………………B-1 Physician Survey……………………………………………………………………B-1 Consumer Focus Group Guide………………………………………………………B-5 Key Informant Guide………….………………………………………………….…B-10 Summary of Focus Group Findings………………………………………….........................C-1

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Survey Data Tables………………………………………………..…………………………D-1

JSI RESEARCH AND TRAINING INSTITUTE TEAM Alec McKinney, MBA Co-Project Director Jeanne Day, MPH Co-Project Director Epidemiologist Karen Schneider, MA, PhD Epidemiologist Laurie Robert, MS Epidemiologist John Carper, MS Information Specialist/Librarian Danielle Cuénoud, BS Research Associate

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EXECUTIVE SUMMARY The Commonwealth of Massachusetts (MA) has consistently ranked in the top ten of U.S. states in reported Lyme disease cases and the trend has been that cases in the state increase every year. Given this, the Massachusetts Department of Public Health (MDPH) , Bureau of Communicable Disease Control, now the Bureau of Infectious Disease Prevention, response and Services, contracted with John Snow, Inc. (JSI) to conduct a statewide needs assessment to: 1) explore the public’s perceptions, knowledge, attitudes, and preventive behaviors with respect to Lyme disease; 2) gain a better understanding of primary care providers’ experiences, practice patterns, and knowledge of Lyme disease; 3) evaluate how the Bureau could improve and expand their prevention education programs aimed at communities and primary care providers alike; and 4) explore how the Bureau could improve and/or simplify their Lyme disease case reporting system. Methodology The state was subdivided into six geographic areas by combining counties in proximity to each other and with similar rates of Lyme disease. Since no single method was sufficient to explore all four stated project goals, a mixed method design was developed. The design included an initial literature search physician survey, public focus groups, and key informant interviews. 4,500 licensed primary care doctors in Massachusetts in the areas of pediatrics, general practice, family practice and internal medicine. The following topic areas were chosen to be included in the survey: physician demographics (specialty, number of years in practice, number of patients seen per week, number of patients that s/he diagnosed with Lyme disease in past year); attitudes and beliefs (local endemicity, if perceives self an expert in Lyme); and knowledge and behaviors (epidemiology, symptoms, diagnosis, treatment).

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In addition to the physician survey, consumer focus groups were held in order to obtain a more in-depth understanding of consumers’ knowledge and experiences with Lyme disease. The goal was to explore issues related to Lyme disease education, screening/treatment/reporting protocols, and prevention and to determine the general attitudes, behaviors, beliefs, knowledge, and risk perception. Participants were also asked questions about their experience with their primary care provider and how issues related to Lyme disease were handled in this setting The JSI Project Team conducted a series of interviews with key stakeholders from across the state. Transcripts of the interviews were reviewed and themes related to the different topic areas (knowledge, prevention, diagnosis, treatment, reporting, attitudes/beliefs, etc.) that consistently emerged across interviews were identified and reported.

Results Physician Survey Results Physician responses varied by geographic area and practice type. Of particular note was the finding that 20% of the physicians that responded had not seen a case of Lyme disease within the last 12 months. Overall, pediatricians in all areas were most likely to discuss Lyme disease with all patients, not just patients they considered to be at high risk for exposure, and to discuss prevention methods. Physicians of all types in hyper-endemic areas were more likely to discuss Lyme disease and its prevention with their patients than physicians from areas with lower prevalence. Half of the physicians stated that they needed patient educational materials, such as brochures, handouts, flyers, fact sheets or posters. Many also requested provider educational material in the form of periodic updates either via mail or email on the latest recommendations for prophylaxis, diagnosis and treatment of Lyme disease. The need for this type of outreach was

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supported by the finding that physicians relied on professional journals and MDPH to educate them about Lyme disease. Disease reporting emerged as a significant obstacle and/or concern for providers. The top three reasons overall for not reporting all cases were: 1) “If I order a serologic test, then the lab sends MDPH the results so I don’t have to report”; 2) “I didn’t know if I was supposed to report all Lyme disease cases”; and 3) “It requires that I fill out and send back a form, which I just don’t have time to do”).The most frequent suggestion provided by physicians on how to make reporting of Lyme disease cases easier in the future was to have electronic/on-line reporting. The majority of physicians were aware that Lyme disease is considered to be endemic throughout the state and that both tick species and duration of attachment were important for transmission. There is some evidence that not all physicians are aware of the limitations of serologic testing. Just under two-thirds of physicians would utilize serologic testing on a patient that presented with a diagnostic erythema migrans (EM) rash and a slightly higher proportion believe that serologic tests are useful for tracking treatment response. One-quarter reported that they would use serologic testing for a patient with a recent (3 days) history of a tick bite but without symptoms. Physicians from the Cape and Islands, the first area to become endemic and the area with the highest prevalence of disease, were more likely to indicate that they would use diagnostic and treatment protocols that were not necessarily consistent with published guidance. This may, in part, be a reflection of their greater comfort level, relative to their colleagues in other parts of the state, with a well-established disease.

Public Focus Group Results Recruiting for participation in these groups was difficult in all areas, however, geographic areas with low levels of disease were most difficult. More than half of the participants had had 5

Massachusetts Lyme Disease Needs Assessment

experience with Lyme disease either personally, or through a family member’s diagnosis. Level of knowledge was correlated with experience and many of the participants had a good grasp of Lyme disease. There were definitely participants who knew very little and nearly everyone expressed some misconceptions across the full range of issues including how Lyme disease is transmitted, clinical manifestations, how one prevents the disease, and how to test for or treat the disease. Participants were not always aware that the type of tick and the duration of attachment were important factors for transmission. Some expressed concern that being around animals, including dogs, would increase their risk of disease. Knowledge about the appropriate tick removal technique was not always apparent. General awareness of symptoms associated with Lyme disease was evidenced and included specific knowledge about the EM rash. Discussion around antibiotic treatment was heated and produced some anxiety. There did not appear to be understanding that there might be situations for which physicians would not prescribe antibiotics. There was good understanding of the personal protective measures that were recommended and tick checks were reported as being sued most frequently. Despite this general awareness, most people admitted that they did not always practice basic prevention measures and a significant number said that they never practiced these measures. Overall, there was general nonchalance about prevention and a lack of appreciation of the risks of Lyme disease and/or the importance of taking preventive measures. Despite this, nearly everyone also endorsed the idea that an ad campaign utilize a multi-faceted approach using personal stories (both early stage and late stage of Lyme) and vivid language (“scare tactics”) geared to highlighting the risks and severity of the disease would be useful in preventing disease. One of the public groups discussed the value of focusing on youth sports organizations and coaches as a way of reaching out to children and families. Finally, there was a great deal of discussion regarding the importance of 6

Massachusetts Lyme Disease Needs Assessment

engaging organizations that sponsor or host outdoor activities, such as the Audubon Society, youth camps, and the State Park Service.

Key Informant Interview Results Many primary care providers reported that they spend a great deal of time seeing patients who are unduly anxious about having Lyme or concerned about bites by insects that are not Lyme disease vectors. Perhaps more importantly, these patients often advocate strongly for unnecessary testing and/or treatment regimens that are not supported by the literature. The presence of this level of anxiety was supported by the public focus group results. Regardless of region, practice setting or type of physician, a large number of providers commented in our interviews that they only provide education at the request of their patients and did not automatically discuss Lyme disease prevention. Physicians and consumers who saw the educational materials developed by MDPH at the focus groups or interviews were impressed and wanted extra copies to distribute to family, friends and patients. Complimenting the survey results, physicians commented on the burden of the reporting process and there was an overall feeling by physicians that they simply have too much paperwork to complete. Physicians from both the survey and key informant interviews commented specifically about the length of the form and the content of the questions. The most common suggestion from physicians regarding what MDPH could do to improve the reporting process was to automate reporting via an Internet-based system.

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Recommendations 1. Because level of public knowledge seems to correlate with disease prevalence, education efforts should produce maximum results in areas where the disease is emerging or rapidly increasing. 2. Education efforts should be multi-faceted and should target prominent community members and those who have access to at-risk populations, such as athletic coaches, teachers, senior center or community center staff, and camp counselors, as well as engage organizations that sponsor or host outdoor activities, such as the Audubon Society, youth camps, and the state Department of Conservation and Recreation. 3. Physicians are interested in MDPH educational materials and are willing to distribute them to patients. Making them available to patients in the waiting room may encourage patients to seek additional information from their provider. 4. MDPH should increase outreach to physicians, possibly partnering with the Massachusetts Medical Society to do so. Notification of publication of recent articles on Lyme disease via email or through the MDPH web site would be useful. 5. Specific areas for outreach to physicians should include information on the limitations of serologic tests and guidance about propyhlaxis recommendations. 6. According to physicians, developing an online reporting capability would facilitate reporting of cases and ultimately lead to improved compliance.

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Massachusetts Lyme Disease Needs Assessment

BACKGROUND AND PURPOSE The Commonwealth of Massachusetts (MA) has consistently ranked in the top ten of U.S. states in reported Lyme disease cases and its numbers are decidedly on the rise. In 2005, for example, Massachusetts ranked 4th nationwide in case numbers with 2,341 reported Lyme cases to the Centers for Disease Control and Prevention (CDC), a 46% increase over 2004 numbers. Comparatively, nationally, the reported cases totaled 23,305, an 18% increase in numbers since 2004.1 In 2005, the incidence rate of Lyme disease in Massachusetts was 36.3 per 100,000. Incidence was markedly higher in Dukes County (577.2 per 100,000), and increasing in Suffolk, Norfolk and Middlesex counties between 2004 and 2005.2 According to the latest statistics from the Massachusetts Department of Public Health (MDPH), the areas of highest incidence are Cape Cod and Southeastern MA, Nantucket and Martha’s Vineyard, Essex County (north of Boston), towns along the Middlesex and Worcester County border and the Quabbin Reservoir watershed, and in southern Berkshire County.1 Reducing the incidence of Lyme disease by the end of the decade was adopted in 2000 as one of the National Healthy People 2010 goals. The goal was to reduce Lyme disease incidence in endemic states from 17.4 cases per 100,000 people to 9.7 cases per 100,000 in the next decade. Northeastern states, including Massachusetts, are considered endemic and within Massachusetts hyper-endemic areas, such as Cape Cod and the Islands, have been identified where incidence is even greater. However, this aim was adopted when vaccine was available and the idea was to decrease the number of cases through targeted vaccination. The Lyme

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Lyme Disease Association, Inc. (LDA). Massachusetts Lyme Disease Briefing for Senator Edward Kennedy. LymeDiseaseAssociation.org 2 MDPH Statistical Data. Available at: http://www.mass.gov/Eeohhs2/docs/dph/cdc/lyme/lyme_disease_surveillance_2005.pdf

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disease vaccine was removed from the market in 2002, while at the same time, states reported an increase in the number of newly diagnosed cases.

Barnstable Berkshire Bristol Dukes Essex Franklin Hampden Hampshire Middlesex Nantucket Norfolk Plymouth Suffolk Worcester State Total

229 66 148 90 254 24 118 68 444 29 252 320 45 238 2341

101.1 50.1 27.1 577.2 34.4 33.2 25.6 44.3 30.4 285.2 38.6 65.0 6.9 30.4 36.3

Number of Confirmed Lyme Disease Cases Reported in MA By Year, 1990-2005

Number

2005 Incidence County (unknown for Confirmed Rate (per Cases (#) 100,000) 16 cases)

2400 2200 2000 1800 1600 1400 1200 1000 800 600 400 200 0 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

Year MDPH Office of Integrated Surveillance and Informatics Services

Given the high incidence rates in Massachusetts, it is imperative that all stakeholders work together to raise awareness, promote prevention, reduce the incidence of the disease, and decrease the overall impact that the disease has on those who live, work, and visit the Commonwealth. As part of these efforts, the Massachusetts Department of Public Health, Bureau of Communicable Disease Control contracted with John Snow, Inc. (JSI) to conduct a statewide needs assessment to: 1) explore the public’s perceptions, knowledge, attitudes, and preventive behaviors with respect to Lyme disease; 2) gain a better understanding of primary care providers’ experiences, practice patterns, and knowledge of Lyme disease; 3) evaluate how the Bureau could improve and expand their prevention education programs aimed to communities and primary care providers alike; and 4) explore how the Bureau could improve and/or simplify their Lyme disease case reporting system. The overall goal of the project is to provide information to the MDPH that will guide them in their efforts to reduce the overall incidence of Lyme disease and promote community 10

Massachusetts Lyme Disease Needs Assessment

awareness, while also encouraging prompt recognition, appropriate diagnosis, effective treatment, and proper reporting of the disease by the medical community. To accomplish this goal, John Snow, Inc. along with a team of staff members at the Massachusetts Bureau of Communicable Disease Control developed a multi-faceted methodology that collected information from the general public and the medical community from across the Commonwealth. More specifically, the John Snow, Inc. project team conducted a series of consumer focus groups, a statewide primary care provider survey, and a series of key informant interviews with Lyme disease experts and primary care providers. The following is a review of the project’s approach and methods, a summary of the project’s key findings, and a review of the project team’s conclusions and recommendations. Additionally, next steps and areas where further research is needed are discussed.

METHODS Overview of Approach Since no single method would allow all of the different perspectives and issues about Lyme disease in Massachusetts to be captured, a mixed method design was proposed by the project team. Quantitative data were gathered using a mail survey of primary care physicians in Massachusetts and qualitative data using focus groups of consumers from around the State, as well as key informant interviews with practicing physicians, specialty doctors, and public health officials. The qualitative data provide the context in which the quantitative data can be interpreted and allow a better understanding of the various challenges, benefits and nuances of the management of Lyme disease from both the consumer and physician perspectives with respect to symptomatology, diagnosis, treatment, reporting, education and prevention of the disease.

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Literature Review The background research was conducted by the project’s team of epidemiologists who have a background in infectious disease. Significant support was also provided by JSI’s in-house Librarian/Research Analyst. The background research included an extensive and comprehensive web-based review of the current literature on Lyme disease with respect to: other needs assessments on the state and local levels; physician knowledge, attitudes, beliefs and behaviors; and community member knowledge, attitudes, beliefs and behaviors. Abstracts and articles were identified using MEDLINE and CINAHL (Cumulative Index to Nursing & Allied Health Literature) using the Medical Subject Heading (MeSH) “Lyme Disease” combined with the MeSH term “Attitude of Health Personnel,” the MeSH term “Health Knowledge, Attitudes, Practice,” or the general terms knowledge or attitude or perceptions or behaviors. After the background research was completed, findings were catalogued, summarized and reviewed as an annotated bibliography (see Appendix A). Table A-1 in Appendix A summarizes Lyme disease survey-related journal articles, which were reviewed to create the physician survey as well as questions for the key informant interview and focus group guides.

Physician Survey Implementation and evaluation of the physician survey was guided by findings from the background research and literature review. Prior instruments, such as those used to survey physicians in New Hampshire and Connecticut,3,4 helped determine topic areas and formulate question wording. The following topic areas were chosen to be included in the survey: physician demographics (specialty, number of years in practice, number of patients seen per week, number 3

Murray T, Feder HM. Management of tick bites and early Lyme disease: a survey of Connecticut physicians. Pediatrics 2001;108:1367-70. 4 Magri JM, Johnson MT, Herring TA, Greenblatt JF. Lyme disease knowledge, beliefs and practices of New Hampshire primary care physicians. J Am Board Fam Pract 2002;15:277-84.

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of patients that s/he diagnosed with Lyme disease in past year); attitudes and beliefs (local endemicity, if perceives self an expert in Lyme); and knowledge and behaviors (epidemiology, symptoms, diagnosis, treatment). The survey was 4 pages in length including 28 questions. Appendix B contains a copy of the physician survey. The survey sample included active, practicing primary care physicians in Massachusetts who have the greatest exposure to Lyme disease cases and are primarily responsible for diagnosing and treating Lyme disease in their patients. Licensed primary care doctors in Massachusetts in the areas of pediatrics, general practice, family practice and internal medicine were sampled using the Massachusetts Board of Registration in Medicine physician file. From this file, the target population was enumerated, which included 9,211 eligible physicians in Massachusetts. The physician population was stratified and sampled by geographic area and physician specialty (pediatrics, internal medicine, general practice and family practice). The six geographic areas were created by combining counties near in proximity and with similar rates of Lyme disease. For example: Barnstable, Dukes and Nantucket were combined to form “Cape Cod and Islands”; and Bristol, Plymouth and Norfolk were combined to form “Southeastern Massachusetts.”5 In terms of sampling rates, 100% of physicians (262 total) in Cape Cod/Islands were included in the sample; 65% of practicing primary care physicians were sampled from Southeastern Massachusetts, 25% of physicians from Suffolk County, 55% from Northeastern Massachusetts, 60% from Worcester County, and 75% from Western Massachusetts. In all, 4,500 physicians were contacted to participate in this study and were mailed surveys. A pre-notification letter was mailed out to sampled physicians approximately two weeks before the mailing of the actual survey, using addresses provided in the Massachusetts Board of Registration physician data file. The letter was signed by Dr. Alfred DeMaria, Director of the 5

Other areas included: Western Massachusetts (Berkshire, Franklin, Hampden, and Hampshire); Worcester County; Suffolk County; and Northeastern Massachusetts (Essex and Middlesex).

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Bureau of Communicable Disease Control at MDPH, with the hope that this letter would increase the survey response rate. In the letter, physicians were alerted to the purpose of the study and provided re-assurance that their answers would remain confidential and only aggregated responses would be reported. Also, it allowed bad addresses to be identified that could not be used when mailing the survey. Two hundred and four physicians were removed from the sample because pre-notification letters were returned with bad addresses. Both paper and web-based versions of the survey were offered as methods for primary care doctors to complete the survey. A paper survey was mailed to each physician that included a unique identifier that allowed physicians in the sample that had completed the survey to be tracked. Physicians could also use this unique identifier to complete the survey online. The link for the online version of the survey (created in SurveyMonkey, Portland OR) was provided, and physicians were able to use this unique identifier to log in to the online survey. The web survey was created to mimic the paper version of the survey (same questions wording, same response options, same question flow); however, the SurveyMonkey survey automatically led respondents through the skip patterns and required them to answer all questions fully. Three to four weeks after the survey, a reminder letter was mailed out to those physicians that had not yet returned their surveys. The purpose of the reminder letter was to increase the response rate by reminding physicians about the survey and its purpose. The letter also included information about the incentive. For those physicians that completed the survey, their names were entered into a drawing to win one of three iPod Nanos. The drawing was held about two months after the survey was mailed out and all physicians who completed the survey (regardless of mode of completion or wave of response) were entered into the drawing. Physicians that chose to complete the paper survey returned their responses by mail (in a provided, postage-paid return envelope) or by fax to JSI. The paper copies of the survey were 14

Massachusetts Lyme Disease Needs Assessment

scanned using Teleform and verified, creating a data set in Excel. Data from the web-based survey were downloaded from the website as an Excel file. Web and paper survey data were merged into one data file and then cleaned, coded and analyzed in SAS version 9 (SAS Institute, Inc., Cary NC). For categorical variables, frequencies (i.e., percentages) were reported; for continuous variables, means and ranges were estimated. Data were presented overall (state level) and also stratified by geographic area, type of physician, number of patients seen with Lyme in past year, type of practice, and percent of Lyme cases reported to the State.

Consumer Focus Groups In addition to the physician survey, consumer focus groups were conducted in order to obtain a more in-depth understanding of consumers’ knowledge and experiences with Lyme disease. More specifically, the goal was to explore issues related to Lyme disease education, screening/treatment/reporting protocols, and prevention and to determine the general attitudes, behaviors, beliefs, knowledge, and risk perception. Participants were also asked questions about their experience with their primary care providers and how issues related to Lyme disease were handled in this setting MDPH and the JSI Project Team made sure that the focus groups were geographically represented in order to capture regional variation in disease incidence. Four focus groups with community members were conducted across the Commonwealth of Massachusetts: Fall River MA, Southeastern MA (moderate incidence); Greenfield MA, Western MA (low incidence); Shrewsbury MA, Worcester County (moderate incidence); and Hyannis MA, Cape Cod and Islands (high incidence). The focus groups consisted of approximately 6-9 participants and were facilitated by two JSI team members: one a skilled focus group moderator and the second a moderator/note taker. To help guide the moderators and ensure consistency across the four 15

Massachusetts Lyme Disease Needs Assessment

groups, a Moderator’s Guide was developed at the start of the project. The guide outlined focus group goals and the questions asked of participants about knowledge of disease, prevention, education, and experiences with Lyme disease. A copy of the focus group Moderator’s Guide can be found in Appendix B. Participants in the groups received food and a $20 stipend for their time. JSI worked with MDPH and other community-based organizations throughout the Commonwealth to facilitate recruitment for the focus groups. Dates, times, and locations were set and flyers were created. Three to four weeks before the date of the group, JSI team members traveled to the location of the focus group and posted flyers throughout the community at different locations (grocery stores, community health centers, senior centers, libraries, town halls, schools, etc.). Additionally, when possible, assistance was obtained from community organizations, such as schools, libraries, and senior centers, to assist with distributing flyers and promoting participation. Specific to Greenfield, acquaintances of the JSI project team assisted with recruitment in the area by posting flyers and talking to friends and family. Finally, separate recruitment notices were posted on Craigslist for Western MA, Southeastern MA, and Worcester County. Recruitment was easier in areas where there was a higher incidence of disease (e.g., Hyannis and Fall River) and, conversely, more challenging in areas with low incidence (e.g., Shrewsbury and Greenfield). Population density also had a major bearing on ease of recruitment. Focus group discussions were recorded by a JSI note taker. For the Greenfield group, the discussion was tape recorded since only one moderator was available to be at the group. Transcripts of the four focus groups were reviewed and themes related to the different topic areas (knowledge, prevention, education, attitudes/beliefs, etc.) that consistently emerged across groups were identified and reported. 16

Massachusetts Lyme Disease Needs Assessment

Physician Key Informant Interviews The JSI Project Team conducted a series of interviews with key stakeholders from across the State. The JSI Project Team worked with MDPH to identify a representative list of individuals to be interviewed, including for the most part practicing physicians, but also some experts in the field, public health officials and patient advocates. Efforts were made to ensure that the list was geographically representative, as well as representative of the full range of relevant medical specialties (e.g. pediatricians, internists). This helped to ensure that the findings took into consideration the full breadth of perspectives and could identify any regional variation. As was the case with the focus groups, a Key Informant Interviewer’s Guide was developed at the start of the project, which outlined the interview goals and the types of questions asked of participants. More specifically, questions focused on Lyme disease education, screening/treatment/reporting protocols, and issues related to prevention, as well general attitudes, behaviors, beliefs, and knowledge. Appendix B contains a copy of the Key Informant Interviewer’s Guide. The semi-structured interview guide allowed for a free-flowing and open discussion, while at the same time ensuring that consistent information was collected across the interviews, regardless of who was conducting the interview. Recruitment occurred through various avenues. A list of potential key informants was provided to JSI by MDPH. Additionally, the JSI project team had a table with general information about Lyme disease, as well as information about the project and the need for interviewees, at the Massachusetts Medical Society Meeting on May 8-10, 2008. Finally, physicians known through team members’ other work at JSI and through other JSI staff were approached. Phone calls, faxes, and emails were sent to potential participants, which included information about the project and the interview. Finally, snowball sampling was used to recruit participants. At the end of an interview, physicians were asked for the names and contact 17

Massachusetts Lyme Disease Needs Assessment

information of colleagues who might also be willing to participate in the study. As an incentive to participate, interviewees were offered a $20 gift card to Dunkin Donuts. The interviews were conducted in person or by telephone. Most of the interviews were one-on-one; although, one focus group of pediatricians was conducted in Southeastern Massachusetts. The interviews took roughly 45-60 minutes and the Project Team interviewed roughly 20 individuals over the course of the project. Notes were taken during the interview on what was discussed. For the physician group, the discussion was recorded in order to ensure that important information and ideas were not missed. Transcripts of the interviews were reviewed and themes related to the different topic areas (knowledge, prevention, diagnosis, treatment, reporting, attitudes/beliefs, etc.) that consistently emerged across interviews were identified and reported.

RESULTS Literature Review The literature review resulted in 60 articles published between 1989 and 2008 that met the defined selection criteria and were relevant to the focus of this needs assessment. The articles are sorted by year and referenced in Appendix A of this report. Further, Table 1 of Appendix A includes 30 summary and survey articles that were identified in the literature review. More specifically, the six bolded articles were instrumental in informing the development of the physician survey with respect to identifying relevant domains, effective modes of delivery, relevant populations to sample, and question wording. The most recent study that involved a survey of physicians regarding practice patterns related to Lyme disease was published in 2003. Lieber, Hedelin and Lipsker (2003) interviewed in-person 106 randomly selected general practitioners in France and asked questions regarding

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their level of medical training on Lyme borreliosis, and their specific practice patterns diagnosing and treating patients presenting with erythema migrans (EM) rashes. Other studies reporting results from surveys of medical providers on Lyme disease included a 2002 study by Boltri, Hash and Vogel. These researchers mailed a survey to 1,331 family physicians in Georgia and requested information on the number of cases of Lyme disease they diagnosed in the past year and the criteria they used to make the diagnoses. Magri, Johnson, Herring, and Greenblatt (2002) mailed a 21-item questionnaire to 600 randomly selected family practitioners, internists and pediatricians in New Hampshire, asking about their knowledge of the disease, beliefs, and practices. Murray and Feder (2001) published in Pediatrics their findings from a survey of Connecticut physicians where the goal was to better understand how doctors treated deer tick bites and EM rashes (n=320). Ziska, Donta, and Demarest (1996) mailed questionnaires to physicians in Lyme disease endemic areas throughout the United States to assess provider preferences and practices in the diagnosis and treatment of Lyme disease. Finally, in 1994, Eppes, Klein, Caputo and Rose published results from their survey of 124 primary care doctors in a seven county endemic region with the purpose of evaluating beliefs and practice habits of physicians.

Physician Survey Response Overall, 21% of sampled physicians returned their surveys (n=881). Response rates varied by geographic area: Cape Cod and Islands, 24%; Western Massachusetts, 23%; Northeastern Massachusetts, 21%; Suffolk County, 15%; Worcester County, 21%; and

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Southeastern Massachusetts, 21%. Given the difficulty of engaging physicians and gaining their cooperation in survey research, this low response rate was to be expected.6 One hundred and thirty-six surveys were returned by physicians who answered that they practiced primary care zero percent of the time. Since these physicians were not actively seeing patients, they were removed from analyses. The final analytic sample consisted of 745 primary care physicians from around Massachusetts who provided patient care. The results of the data analysis can be found in Appendix D. Characteristics of Physicians Respondents were most likely from Northeastern Massachusetts (29.4%), Southeastern Massachusetts (20.4%) and Western Massachusetts (16.4%). Only 5.8% of the sample reported practicing on Cape Cod and the Islands7, while 13.4% practiced in Suffolk County and 14.5% practiced in Worcester County. Overall, nearly 75% of physicians that responded were either internists (39.5%) or pediatricians (35.3%). A large percent also practiced family medicine (20.7%). Two percent of survey respondents classified their specialty as “other”8, which most likely indicated a specialization that was not listed as their primary area of practice in the physician data file obtained from the Board of Registration in Medicine. Compared to the other regions, a larger percent of physicians from Suffolk County were internists (58.0%) and a smaller percent were family practitioners (8.0%). A smaller percentage of physicians from Worcester County were pediatricians (25.9%). The average length of time spent practicing medicine was 18.2 years (range: 100 patients, 11.3%). Among pediatricians, 65.6% saw more than 60 patients per week. Among physicians from Suffolk County, 22.0% saw more than 60 patients per week. Over 50% of physicians were practicing medicine in a group practice setting (53.1%), 14.9% in a solo practice and 11.4% in a community health center. Pediatricians (69.4%) and physicians from Southeastern Massachusetts (71.1%) were most likely to be in a group practice setting. Over one-third of physicians on Cape Cod and Islands were in a solo practice setting, and almost one-quarter of family/general practitioners were in a community health center. On average, physicians responded that they practiced primary care 85% of the time (range: 1-100%). This average was lower for those physicians who categorized themselves as “other” type of physician (49.3%) and physicians in Suffolk County (64.2%). On the survey, physicians were asked if they considered themselves experts in Lyme disease or if they had received specialized training in the management of Lyme disease (Figure 1). Overall, only 6.8% responded “yes” to the expert question. However, when broken down by geography, 13.6% physicians on Cape Cod had specialized training or considered themselves experts. Additionally, by practice setting, 10.1% of physicians in solo practices considered themselves experts, compared to 3.5% of physicians in community health centers.

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Figure 1: Percent of physicians who reported that they would consider themselves experts in Lyme disease or had specialized training: Overall, by geography, by type of physician and by type of practice setting. Community Health Centers (n=85) Academic Med Ctr/ Hospital-based Pracs (n=127) Group Practices (n=390) Solo Practices (n=109) Western MA (n=122) Worcester County (n=108)

3.5% 7.9% 6.4% 10.1% 4.9% 6.6%

Northeastern MA (n=219)

5.1%

Suffolk County (n=100)

5.1%

Southeastern MA (n=149) Cape Cod and Islands (n=44) Pediatricians (n=259)

10.1% 13.6% 7.0%

Internists (n=287)

5.6%

Family/General Practitioners (n=169)

5.9%

Overall (n=736)

6.8%

0.0%

20.0%

40.0%

60.0%

80.0%

100.0%

Experience with Lyme Disease Overall, almost 20% of physicians reported not seeing any patients with Lyme disease in the past 12 months (see Figure 2). Almost 45% of physicians in Suffolk County reported not seeing any patients with Lyme disease in the past year, while only one physician on Cape Cod/Islands reported not seeing any patients with Lyme disease in the past 12 months. On the whole, 66.4% of physicians saw 1-10 patients and less than 2% saw more than 25 patients with Lyme disease in the past year. Physicians were asked to approximate what percentage of the Lyme disease patients they had seen in the past year presented with an EM rash. On average, physicians responded that 49.0% of their Lyme disease patients presented with an EM rash. However, this number was slightly lower when reported by physicians from Cape Cod/Islands (37.5%) and by physicians in solo practice (40.5%).

22

Massachusetts Lyme Disease Needs Assessment

Figure 2: Percentage of patients seen with Lyme disease in the past 12 months. Overall and by geography. Western MA (n=120)

12.5%

Worcester County (n=107)

17.8%

Northeastern MA (n=218)

6.5% 1.9%

64.7% 44.9%

10.6% 1.4% 51.0%

9.3%

66.2%

Cape Cod and Islands (n=43) 2.3% Overall (n=737)

10.0% 0.0%

73.8%

23.4%

Suffolk County (n=98) Southeastern MA (n=151)

77.5%

21.2%

60.5% 19.5%

0.0%

2.0% 2.0%

34.9% 66.4%

20.0% 0 patients

40.0% 1-10 patients

3.3%

60.0% 11-25 patients

2.3% 12.4% 1.8%

80.0%

100.0%

>25 patients

Reporting of Lyme Disease It is required by regulation (105 CMR 300) that physicians report all cases of Lyme disease they diagnose in their patients by submitting a completed paper reporting form to MDPH. A number of questions on the physician survey specifically asked doctors to provide information on their reporting behavior. Overall, one-third of physicians who had seen cases of Lyme disease within the past 12 months responded that they reported zero cases of Lyme disease to MDPH in the past year, while 45.7% responded that they reported all cases of Lyme disease (see Figure 3). There were also a large number of physicians who did not answer this question (missing observations for 44 physicians or 7% of sample who saw Lyme disease patients). There was some variation by physician type (38.9% of family/general practitioners, compared to over half of pediatricians, reported all cases), by geography (over half of physicians on Cape Cod/Islands, compared to less than one-third of physicians in Suffolk County, reported all cases), and by practice setting (50.0% of physicians in solo practices, 24.1% of physicians at academic medical 23

Massachusetts Lyme Disease Needs Assessment

centers/hospital-based practices, and 36.4% of physicians at community health centers reported all cases). Figure 3: Percentage of physicians that report 0%, >0-0% to