An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model.

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

SUBMITTER: Treadwell MJ 

PROVIDER: S-EPMC9356962 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature