ASCQ-Me research team 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.
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.
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.