Designing a Community-Based Intervention to Improve the Health of Medically-Underserved Women with Systemic Lupus Erythematosus

Transcription

1 Designing a Community-Based Intervention to Improve the Health of Medically-Underserved Women with Systemic Lupus Erythematosus Candace H Feldman MD, MPH Patricia Fraser MD Melanie Zibit MEd, MBA Derrick J Todd MD, PhD Bonnie L Bermas MD Paul R Fortin MD, MPH Elena Massarotti MD Karen H Costenbader MD, MPH

2 Disclosures I have no relevant financial relationships to disclose.

3 Evidence-Based Medicine Roxbury Lupus Study:Finckh A, Cooper GS, et al. Occupational silica and solvent exposures and risk of systemic lupus erythematosus in urban women. Arthritis Rheum. 2006; 54(11): Strategies: Israel BA, Schultz A, et al. Community-based Participatory Research: Policy Recommendations for Promoting a Partnership Approach in Health Research. Education for Health. 2001; 14(2): Disparities in SLE: Fernandez M, Alarcon GS, et al. A multiethnic, multicenter cohort of patients with systemic lupus erythematosus (SLE) as a model for the study of ethnic disparities in SLE. Arthritis Rheum May 15; 57(4):

4 Background: Disparities in SLE Lupus in Minorities, Nature v. Nurture (LUMINA) Investigation of racial/ethnic disparities in specific SLE manifestations and outcomes Wide range of factors contribute to health disparities Roxbury Lupus Study Link between environmental exposure and increased prevalence of SLE among African American women Established a partnership between academicians and medically-underserved African American women with SLE Fernandez 2007; Finckh 2006; Karlson 1997, 2004; Ward 1993, 1997, 2005, 2008; Yazdany 2007; Yelin 1998, 2007

5 Framework for SLE Disparities Fixed Factors Age Sex Genetics Race/ethnicity Education Intermediate outcome (Difference) Healthcare access Long-term outcomes (Disparity) Morbidity and mortality Modifiable Factors Healthcare system Health insurance Health behaviors Health literacy Environmental exposures Social support Larger sociopolitical, environmental and economic factors Adapted from House JS, J Health Soc Behavior, 2002

6 Community-Based Participatory Research (CBPR) Active involvement of community to address inequalities that contribute to poor health processes and outcomes Members of community acutely aware of barriers faced Community must be part of both a better understanding of obstacles, and development of strategies to overcome them Goodare 1995; Israel 2001; O Donnell 2004

7 Medically Underserved Areas (MUA) Boston, MA Roxbury, Dorchester and Mattapan areas Predominantly African- American, urban communities Federally-defined medically underserved areas since % of families living below Federal poverty level

8 Aims To establish a relationship with medicallyunderserved women with SLE To provide educational seminars and focus groups to exchange information and ideas To identify community leaders interested in partnering with academicians to design and test future interventions to improve access to healthcare and reduce disparities

9 Methods: Forums Community meeting Discussions at community meeting and follow-up key informant interviews led to determination of educational topics and target population Two educational forums, held in a medicallyunderserved community (Roxbury, MA) Focus groups followed the second forum

10 Methods: Recruitment Flyers mailed to 282 women: BWH Lupus Registry (validated SLE by ACR criteria, female, age >18, 11 MUA ZIP codes) Members of Women of Courage and Daughters of Comfort SLE support groups Flyers posted at community centers in MUAs Rheumatologists, primary care physicians, nephrologists and dermatologists recruited patients

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12 Methods: Focus Groups Women were randomly assigned to 3 groups Participants received an IRB-approved information consent handout Each group had a trained moderator with a guide outlining scenarios that described 4 proposed interventions Intervention options were chosen based on successful models used in other chronic diseases to overcome barriers to care and increase healthcare access

13 Methods: Proposed Interventions 1. SLE-specific Patient Navigators 2. Peer Support Network 3. Lupus Health Passport (Print and Internetbased versions) 4. Rheumatologists at Community Health Centers (CHC)

14 Lupus Health Passport Fortin PR; UHN Research Group

15 Methods: Focus Group Analysis 90-minute sessions tape-recorded, transcribed and coded based on themes Each proposed intervention analyzed: Perceived benefits Limitations Ideal target population Implementation questions

16 Results: Participation 28 women attended the first educational forum Anonymous feedback cards collected 29 women attended the second event and participated in focus groups Overlapping, but not same attendees 3 groups: 2 groups of 9, one of 11

17 Results: Demographics 80% identified as African American, 10% Hispanic, 10% White 2 women identified as African American and Hispanic 83% from urban Boston MUAs Mean age of participants: 51 years (SD 18) Age range: 25 to 81 Mean age at lupus diagnosis: 35 years (SD 15)

18 Results: Patient Navigator Model Patient Navigator Model Benefits Limitations Target Populations Implementation Questions Focus Group Themes Liaison between doctor and patient Patient advocate Able to direct patients to available resources Different needs throughout disease course Newly diagnosed women Women later in disease who are sicker or frustrated with their care Would the navigators be trained healthcare workers or lay persons? Would they navigate in person, or by telephone Would they be paid or volunteer? Could their role evolve based on the patient s needs or degree of illness?

19 Results: Peer Support Network Peer Support Network Benefits Limitations Target Populations Implementation Questions Focus Group Themes Reduce isolation and provide coping strategies Form a network of women with SLE Direction to available resources Potential benefit to both peers Peers will also have SLE; participation may be limited during disease flares Lack of knowledge about medical conditions Newly diagnosed women Would peers be paid? How would the peers be trained? Could peers decide on their preferred method of communication and on their degree of participation?

20 Results: Lupus Health Passport Lupus Health Passport Benefits Limitations Target Populations Implementation Questions Focus Group Themes Small size Combines personal information with education Helpful for patients who see many physicians who do not share medical records Unable to fill this out during a doctor s appointment without assistance Privacy and security of internet version Everyone with SLE Would there be a healthcare worker at the appointment who could help fill this out? Who would have access to the online version?

21 Results: Rheumatologists at CHCs Rheumatologists at CHCs Benefits Limitations Target Populations Implementation Questions CHCs= Community Health Centers Focus Group Themes Improve coordination and communication between healthcare providers Easier to have all specialists at an academic center Less choice of providers at CHCs Potential for less privacy and anonymity at a CHC Newly diagnosed young patients with less severe disease Older patients unable to travel Would patients have to give up their rheumatologists at academic medical centers? Could primary care providers receive more education about SLE and provide interim care?

22 Results: Group Discussion Poll Votes in favor; 29 women participating CHCs= Community Health Centers

23 Framework for SLE Disparities Fixed Factors Age Sex Genetics Race/ethnicity Education Intermediate outcome (Difference) Healthcare access Long-term outcomes (Disparity) Morbidity and mortality Modifiable Factors Healthcare system Health insurance Health behaviors Health literacy Environmental exposures Social support Larger sociopolitical, environmental and economic factors

24 Implications Fostered excitement about proposed interventions and definite enthusiasm for future collaboration Provided two community-based forums for the exchange of information, ideas and questions Identified key members of this medicallyunderserved community of women with lupus interested in potential leadership roles

25 Limitations Most women present had rheumatologists at major academic medical centers Some women had participated in past community-based research studies Spanish translation and child care not available Selection bias

26 Future Directions Partner with community to develop and test an intervention to improve access to care Survey of MA community health center medical directors to determine additional barriers to rheumatologic services and potential solutions

27 Acknowledgements Funding provided by Martin P. Solomon Primary Care Fellowship, Department of Internal Medicine, Brigham and Women s Hospital (BWH) Approved by Partners IRB, Protocol #2010p Dr. Karen Costenbader Melanie Zibit Dr. Paul Fortin Speakers: Dr. Bonnie Bermas, Kathy McManus, Dr. Patricia Fraser, Dr. Elena Massarotti; BWH Lupus Center Venues: Yawkey Club of Roxbury, Dimock Health Center Support Groups: Women of Courage and Daughters of Comfort