This application is in response to RFA-HL-10-021, Innovators in Hemoglobinopathies Academic Career Development Award. Persons living with sickle cell disease are often susceptible to social stigmas that heighten their risk for negative clinical outcomes, including pain, health care use, depressive symptoms, and quality of life. However, very little is known about the impact of stigma on clinical outcomes in this population - an issue that was further complicated in prior research by the absence of valid and reliable instruments that assess disease-specific stigma. The proposed research extends the candidate's development of the Measure of Sickle Cell Stigma and explores the ways in which sickle-specific stigma impacts clinical outcomes by: (a) examining specific stigma profiles and their relation to clinical outcomes;(b) assessing temporal variability in sickle cell stigma;and (c) evaluating the influence of changes in stigma on clinical outcomes. In preparation to conduct the proposed studies, the candidate will have a period of mentored support to acquire additional expertise in longitudinal data analysis and clinical research. He has assembled a multidisciplinary team of mentors and advisors collective expertise in SCD pathophysiology, health psychology, statistics, clinical research design and administration, and health informatics. Study 1 will use a profile analysis with multidimensional scaling technique to identify latent profiles of stigma with a large sample (n=250) of adults with sickle cell disease in the Baltimore/Washington metropolitan area. Study 2 will assess daily variability in stigma and clinical outcomes among 48 adult sickle cell patients who will complete diaries over a twelve-week period using innovative technological platforms. Past research indicates that electronic diaries achieve high levels of patient compliance while assuring reliable and valid data entries. Our objectives of determining relations among perceived stigma, pain, health care utilization, depressive symptoms, and quality of life will be enhanced through the use of innovative wireless technology that permits secure, instantaneous data collection. Collectively, the proposed studies will highlight the relevance of perceived stigma for psychological adjustment and demonstrate its impact on clinical outcomes in sickle cell disease. The overall general impact of the proposed research is that it will broaden our scientific understanding of stigma and serve as a catalyst for developing interventions that improve clinical outcomes.

Public Health Relevance

The proposed project will provide a period of support for the candidate to obtain advanced training in longitudinal data analysis and clinical research as he conducts studies to: (a) examine specific profiles of sickle cell disease stigma;(b) evaluate daily variability in stigma; and (c) explore associations between stigma and clinical outcomes. The results will help to clarify the impact of sickle cell stigma on clinical outcomes.

National Institute of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)
Academic/Teacher Award (ATA) (K07)
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Special Emphasis Panel (ZHL1-CSR-P (M3))
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Werner, Ellen
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University of Maryland Balt CO Campus
Schools of Arts and Sciences
United States
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Haywood Jr, Carlton; Lanzkron, Sophie; Diener-West, Marie et al. (2014) Attitudes toward clinical trials among patients with sickle cell disease. Clin Trials 11:275-283
Haywood Jr, Carlton; Bediako, Shawn; Lanzkron, Sophie et al. (2014) An unequal burden: poor patient-provider communication and sickle cell disease. Patient Educ Couns 96:159-64
Haywood Jr, Carlton; Diener-West, Marie; Strouse, John et al. (2014) Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease. J Pain Symptom Manage 48:934-43