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Literature Review

ASCQ-Me research team[1] searched PubMed and PsychLit databases using keywords chosen for their relation to patient-centered health domains. The search included publications after 1999 through June of 2010. Identified abstracts were retrieved and read by two researchers, independently, with disagreements settled in favor of keeping an article in the review.  Articles were included if they contained self-report of the experiences of adults with Sickle Cell Disease (SCD), and were also included if they were about community or outside perceptions of SCD. Articles were excluded if they did not include self-report of the lived/felt experience of adults with SCD and/or health-related quality of life; or where treatment, rather than patients’ symptoms and functioning, was the focus of the article.  

Literature Analysis

Our analysis of the literature revealed that many of the life effects uncovered in the literature review were those typically included in measures of health-related quality of life (HRQOL): pain, fatigue, emotional distress, social relationships, ability to carry out daily activities as well as social roles (worker, student, parent, etc.). Other classes of life effects were typical of topics covered in patient health care experience surveys such as access to treatment and interactions with providers, specific side-effects or discomfort associated with treatments, and methods of coping with and managing a chronic condition. Many of the effects of SCD uncovered by the literature review had to do with the way individuals feel or perceive themselves in relation to society including perceptions of stigmatization, feelings of isolation and alienation, and consequent shame surrounding disclosure of SCD status.

[1] The ASCQ-Me research team, led out of AIR, included San Keller, Manshu Yang, Roger Levine, Christian Evensen, Tamika Cowans, Corrina Moucheraud, and Maureen Maurer from AIR, Marsha Treadwell of UCSF Benioff Children’s Hospital of Oakland, Kathryn Hassell of the University of Colorado School of Medicine, and Ellen Werner of the National Heart Lung and Blood Institute.