Patient-reported outcomes (PROs) in sickle cell disease (SCD) were assessed as part of an overall evaluation of quality of life and function. The findings were published in the American Journal of Hematology.

Mitchell R. Knisely, PhD, RN, of Duke University, and associates conducted a study to measure 6 PROs (pain impact, sleep impact, social functioning, depressive symptoms, tiredness, and cognitive function) using measures from 3 measurement information systems (Adult Sickle Cell Quality of Life Measurement Information System, Patient Reported Outcomes Measurement Information System, and Quality of Life in Neurological Disorders). Patients included in this study were enrolled in the Sickle Cell Disease Implementation Consortium registry.

A total of 2201 participants (mean age, 29.2 years; 57.6% women) were evaluated. Nearly all participants were African-American/Black (96.8%). Almost half of the participants were taking hydroxyurea (48.4%) and more than half were taking opioids (63.2%). The researchers reported that PROs often showed significant associations with each other in multivariate analyses.

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Several demographic, disease, and treatment-related features were predictors of pain impact. These included age, education, social functioning, cognitive function, hydroxyurea use, sleep impact, current opioid use, employment, and time since the most recent pain attack (P <.0001). Tiredness, depressive symptoms, social functioning, pain impact, current opioid use, and household income were linked to sleep impact score (P <.0001).

Features associated with social functioning included employment, cognitive function, depressive symptoms, tiredness, sleep impact, pain impact, number of pain attacks within the past year, and autoimmune/inflammatory comorbidities (P <.0001).

Depressive symptoms were significantly linked to social functioning, cognitive function, tiredness, sleep impact, and sex (P <.0001). Sleep impact, depressive symptoms, social functioning, education, sex, and cognitive function were all linked to tiredness (P <.0001). In addition, tiredness, depressive symptoms, social functioning, and sleep impact were associated with cognitive function score (P <.0001).

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The researchers noted that there was a lack of association between SCD genotype and the examined PROs, even though SCD genotype influences the severity of the disease.

“[F]indings from this study underscore the need for a biopsychosocial approach to care that focuses both on the physical manifestations and the psychosocial impact of the disease,” the authors wrote.

Disclosures: Several study authors have declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures.


Knisely MR, Pugh N, Kroner B, et al. Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: report from the Sickle Cell Disease Implementation Consortium [published online May 25, 2020]. Am J Hematol. doi: 10.1002/ajh.25880