source: The American Society of Pediatric Hematology/Oncology

year: 2016

authors: Gabrielle Vanspeybroeck, Tokunbo Adeniyi, Lewis Hsu

Background: Sickle cell disease (SCD) is a chronic disorder with lifelong effects. Complications include: pain crises, chronic fatigue, organ damage, infections, acute chest syndrome and stroke. Research shows that health related quality of life suffers along with daily activities. Stem cell transplant is an option for eligible patients. Cure by transplant can markedly improve quality of life, but how patients perceive this benefit is not clear.

Objectives: The goal of this study was to explore self-reports of the effects of SCD on work or school along with common themes regarding participants’ perspectives on life without SCD. The hypotheses were that patients (1) perceive greater disability of SCD as they age, and (2) recognize that transplant could relieve them of that disability.

Design/Method: Mixed methods surveys were administered in person to patients seen at the UI Health Comprehensive Sickle Cell Center hospital, pediatric clinic, or adolescent transition clinic. Participant ages ranged from 10 to 40+. Exclusion criteria were: respiratory or contact isolation or extreme pain. Qualitative responses were examined using thematic analysis.

Results: Themes identified by all ages about the effect of SCD on work and school included “Disability,” “School absence,” and “Motivation to disprove odds.” Thematic analysis identified that patients would live their lives differently if cured: “More energy to improve myself,” “New educational goals”, “Career aspirations.” The potential that stem cell transplant would relieve their disability was recognized by nearly all subjects. Older age correlated significantly (P< 0.02) with responses that as relieving their disability, and almost universally the patients would pursue more in their career or education if cured.

Conclusion: Advances in transplantation for SCD can achieve cure for adults and often reduces disability from pain. Heightened perception of benefits by adults supports the important role of adult SCD transplant programs.

This survey is the first to examine perception of disability among the factors that patients consider in their decision about stem cell transplant for sickle cell. Further, few studies include both adolescent and adult sickle cell patients in a single survey, and this opens the door on age-related differences in perception of stem cell transplantation.

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