Abstract
Background: Complications related to sickle cell disease (SCD) result in significant declines in health-related quality of life (HRQOL). While hydroxyurea reduces SCD complications, adherence remains suboptimal. The study's objectives were to assess the feasibility of Internet-based electronic assessment of HRQOL in SCD clinic and to examine the relationship between HRQOL and hydroxyurea adherence in adolescents and young adults (AYAs) with SCD. Procedure: A cross-sectional survey was administered on tablets to 34 AYAs (12–22 years old) in a SCD clinic from January through December 2015. Study measures included Patient Reported Outcomes Measurement Information System (PROMIS®) computerized adaptive testing and
Original language | English (US) |
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Article number | e26369 |
Journal | Pediatric Blood and Cancer |
Volume | 64 |
Issue number | 6 |
DOIs | |
State | Published - Jun 1 2017 |
Keywords
- PROMIS
- adherence
- adolescents
- compliance
- health-related quality of life
- hydroxyurea
- patient-reported outcomes
- patient-reported outcomes measurement information system
- sickle cell anemia
- sickle cell disease
- young adults
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Hematology
- Oncology