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An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model.
- Source :
-
Quality of Life Research . Sep2022, Vol. 31 Issue 9, p2681-2694. 14p. 1 Diagram, 3 Charts. - Publication Year :
- 2022
-
Abstract
- Purpose: To examine the relations between patient-reported outcomes (PROs) within a conceptual model for adults with sickle cell disease (SCD) ages 18 – 45 years enrolled in the multi-site Sickle Cell Disease Implementation Consortium (SCDIC) registry. We hypothesized that patient and SCD-related factors, particularly pain, and barriers to care would independently contribute to functioning as measured using PRO domains. Methods: Participants (N = 2054) completed a 48-item survey including socio-demographics and PRO measures, e.g., social functioning, pain impact, emotional distress, and cognitive functioning. Participants reported on lifetime SCD complications, pain episode frequency and severity, and barriers to healthcare. Results: Higher pain frequency was associated with higher odds of worse outcomes in all PRO domains, controlling for age, gender and site (OR range 1.02–1.10, 95% CI range [1.004–1.12]). Reported history of treatment for depression was associated with 5 of 7 PRO measures (OR range 1.58–3.28 95% CI range [1.18–4.32]). Fewer individual barriers to care and fewer SCD complications were associated with better outcomes in the emotion domain (OR range 0.46–0.64, 95% CI range [0.34–0.86]). Conclusions: Study results highlight the importance of the biopsychosocial model to enhance understanding of the needs of this complex population, and to design multi-dimensional approaches for providing more effective interventions to improve outcomes. [ABSTRACT FROM AUTHOR]
Details
- Language :
- English
- ISSN :
- 09629343
- Volume :
- 31
- Issue :
- 9
- Database :
- Academic Search Index
- Journal :
- Quality of Life Research
- Publication Type :
- Academic Journal
- Accession number :
- 158383546
- Full Text :
- https://doi.org/10.1007/s11136-022-03132-z