Increasing minority research participation through collaboration with community outpatient clinics: the STEP-BD Community Partners Experience

Abstract

Background Minority populations have been under-represented in mental health research studies. The systematic treatment enhancement program for bipolar disorder developed the Community Partners Program (CPP) to address this issue in a large, prospective treatment study of persons with bipolar disorder.

Purpose The primary goal of CPP was to develop a community-based infrastructure for studying bipolar disorder that would enhance the ethnic/racial and socioeconomic diversity of participants.

Methods Selected academic sites partnered with local clinics (n = 6 partnerships in five cities). This report describes the conceptualization, implementation, and qualitative evaluation of CPP, as well as quantitative analysis of clinical and sociodemographic differences between the samples recruited at academic versus community sites.

Results Quantitative analysis of the 155 participants from the six partnerships revealed enrollment of 45% from minority populations (vs. 15% in academic sites). Significant sociodemographic differences were evident not only between academic and community sites, but within minority and non-minority groups across site types. Notably, clinical differences were not evident between participants from academic and community sites. Review of qualitative data suggests that certain factors around implementation of research protocols may enhance community participation.

Conclusions Moving research recruitment and participation into community sites was more successful in increasing minority enrollment than efforts to attract such individuals to academic sites. Recommendations for creating and maintaining academic/community partnerships are given.

Limitations Several important variables were not considered including mood severity, hospitalization, or treatment differences. Minority participants were grouped by combining African American and Hispanics, which may have obscured subgroup differences. A derivation of standard qualitative methods was used in this study. Clinical Trials 2009; 6: 344—354. http://ctj.sagepub.com

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References

US DHHS. Mental Health: Culture, Race, and Ethnicity-a Supplement to Mental Health: a Report of the Surgeon General. US Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Rockville, MD, 2001.

Evelyn B. , Toigo T. , Banks D. et al. Participation in racial/ ethnic groups in clinical trials and race-related labeling: a review of new molecular entities approved 1995-1999. J Nat Med Assoc 2001; 93: 18S-24S.

Miranda J. , Cooper LA Disparities in care for depression among primary care patients. J Gen Intern Med 2004; 19: 120-26.

Cooper LA , Gonzales JJ , Gallo JJ et al. The acceptability of treatment for depression among African-American, Hispanic, and White primary care patients. Med Care 2003; 41: 479-89.

Alvidrez J. , Azocar F. Distressed women’s clinic patients: preferences for mental health treatments and perceived obstacles. Gen Hosp Psychiatry 1999; 21: 340-7.

Tamayo JM , Mazzotti G. , Tohen M. et al. Outcomes for Latin American versus White patients suffering from acute mania in a randomized, double-blind trial comparing olanzapine and haloperidol . J Clin Psychopharmacol 2007; 27: 126-34.

Kessler RC , McGonagle KA , Zhao S. et al. Title lifetime and 12-month prevalence of DSM-III-R psychiatric disorders in the United States. Results from the National Comorbidity Survey . Arch Gen Psychiatry 1994; 51: 8-19.

Breslau J. , Aguilar-Gaxiola S. , Kendler KS et al. Specifying race-ethnic differences in risk for psychiatric disorder in a USA national sample. Psychol Med 2006 ; 36: 57-68.

Breslau J. , Kendler KS , Su M. , Gaxiola-Aguilar S. , Kessler RC Lifetime risk and persistence of psychiatric disorders across ethnic groups in the United States. Psychol Med 2005 ; 35: 317-27.

10.

Gonzalez JM , Thompson P. , Escamilla M. et al. Treatment characteristics and illness burden among European Americans, African Americans, and Latinos in the first 2,000 patients of the systematic treatment enhancement program for bipolar disorder. Psychopharmacol Bull 2007; 40: 31-46.

11.

Garver D. , Lazarus A. , Rajagopalan K. et al. Racial differences in medication switching and concomitant prescriptions in the treatment of bipolar disorder. Psychiatr Serv 2006; 57: 666-72.

12.

Fleck DE , Hendricks WL , DelBello MP , Strakowski SM Differential prescription of maintenance antipsychotics to African American and White patients with new-onset bipolar disorder. J Clin Psychiatry 2002; 63: 658-64.

13.

Kilbourne AM , Bauer MS , Pincus H. et al. Clinical, psychosocial, and treatment differences in minority patients with bipolar disorder. Bipolar Disord 2005; 7: 89-97.

14.

Kupfer DJ , Frank E. , Grochocinski VJ , Houck PR , Brown C. African-American participants in a bipolar disorder registry: clinical and treatment characteristics. Bipolar Disord 2005; 7: 82-8.

15.

Olin JT , Dagerman KS , Fox LS , Bowers B. , Schneider LS Increasing ethnic minority participation in Alzheimer disease research . Alzheimer Dis Assoc Disord 2002; 16: S82-85.

16.

Areán PA , Alvidrez J. , Nery R. , Estes C. , Linkins K. Recruitment and retention of older minorities in mental health services research. Gerontologist 2003; 43: 36-44.

17.

Miskimen T. , Marin H. , Escobar J. Psychopharmacologic research ethics: special issues affecting US ethnic minorities. Psychopharmacol 2003; 171: 98-104.

18.

Allmark P.

Should research samples reflect the diversity of the population?

J Med Ethics 2004; 30: 185-9.

19.

Hussain-Gambles M. , Atkin K. , Leese B. Why ethnic minority groups are under-represented in clinical trials: a review of the literature . Health Soc Care Community 2004; 12: 382-8.

20.

Asch S. , Connor SE , Hailton EG , Fox SA Problems in recruiting community-based physicians for health services research . J Gen Intern Med 2000; 15: 591-9.

21.

Levkoff S. , Sanchez H. Lessons learned about minority recruitment and retention from the centers on minority aging and health promotion. Gerontologist 2003; 43: 18-26.

22.

Dilworth-Anderson P. , Williams SW Recruitment and retention strategies for longitudinal African American care giving research. J Aging and Health 2004; 16: 137S-156S.

23.

Kataoka SH , Fuentes S. , O’Donoghue VP et al. A community participatory research partnership: the development of a faith-based intervention for children exposed to violence. Ethn Dis 2006; 16: S89-97.

24.

Miranda J. , Chung JY , Green BL et al. Treating depression in predominantly low income young minority women: A randomized control trial. JAMA 2003 ; 290: 10-22.

25.

Mulvaney-Day NE , Rappaport N. , Alegria M. , Codianne LM Developing systems interventions in a school setting: an application of community-based participatory research for mental health. Ethn Dis 2006; 16: S107-17.

26.

Sachs GS , Thase M. , Otto MW et al. Rationale, design, and methods of STEP-BD. Biol Psychiatry 2003; 53: 1028-42.

27.

Sachs G. Use of clonazepam for bipolar affective disorder. J Clin Psychiatry 1990; 51: 31-4.

28.

Sheehan D. , Lecrubier Y. , Sheehan H. et al. The mini-international neuropsychiatric interview (M.I.N.I.): The development and validation of a structured diagnostic psychiatric interview for DSM-IV and ICD-10. J Clin Psychiatry 1998 ; 59: 22-33.

29.

Cornwall JR , Jewkes R.

What is participatory research?

Soc Sci Med 1995; 41: 1667-76.

30.

Wallerstein M. Wage setting institutions and pay inequality in advanced industrial societies. Am J Pol Sci 1999; 43: 649-80.

31.

Jones L. , Wells K. Strategies for academic and clinician engagement in community-participatory partnered research. JAMA 2007; 297: 407-10.

32.

Endicott J. , Nee J. , Harrison W. , Blumenthal R. Quality of life enjoyment and satisfaction questionnaire: a new measure. Psychopharmacol Bull 1993; 29: 321-6.

33.

Leon AC , Solomon DA , Mueller TI et al. The range of impaired function tool (LIFE-RIFT): a brief measure of functional impairment. Psychol Med 1999 ; 29: 869-78.

34.

Leon AC , Solomon DA , Mueller TI et al. A brief assessment of psychosocial function of subjects with bipolar I disorder: the LIFERIFT (longitudinal interval follow-up evaluation-range impaired function tool). J Nerv Ment Dis 2000 ; 188: 805-12.

35.

Corner R. , Kielhofner G. , Olson L. Work Environment Impact Scale (WEIS) (Version 2.0). Model of Human Occupation Clearinghouse, Department of Occupational Therapy, College of Applied Health Sciences, University of Illinois, Chicago, 1998.

36.

O’Toole T. , Aaron KF , Chin MH , Horowitz C. , Tyson F. community-based participatory research: opportunities, challenges, and the need for a common language. J Gen Intern Med 2003; 18: 592-4.

37.

Wells KB , Staunton A. , Norris KC et al. Building an academic-community partnered network for clinical services research: the community health improvement collaborative (CHIC). Ethn Dis 2006; 16: S3-17.

38.

Israel BA , Krieger J. , Vlahov D. et al. Challenges and facilitating factors in sustaining community-based participatory research partnerships: lessons learned from the Detroit, New York City and Seattle Urban Research Centers. J Urban Health 2006; 83: 1022-40.

39.

Israel BA , Schulz AJ , Parker EA , Becker AB et al. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health 1998; 19: 173-202.

40.

Gilbert DA , Altshuler KZ , Rago WV et al. Texas medication algorithm project: definitions, rational and methods to develop medication algorithms. J Clin Psychiatry 1998; 59: 345-51.

41.

Miranda J. , Bernal G. , Lau A. et al. State of the science on psychosocial interventions for ethnic minorities . Annu Rev Clin Psychol 2005; 1: 113-42.

42.

Mak WW , Law RW , Alvidrez J. , Perez-Stable EJ Gender and ethnic diversity in NIMH-funded clinical trials: review of a decade of published research. Adm Policy Ment Health 2007; 34: 497-503.

43.

Torrey WC , Drake RE , Dixon L. et al. Implementing evidence-based practices for persons with severe mental illnesses. Psychiatr Serv 2001; 52: 45-50.