Health-related quality of life and adherence to hydroxyurea in adolescents and young adults with sickle cell disease

Sherif M. Badawy, Alexis A. Thompson, Jin Shei Lai, Frank J. Penedo, Karen Rychlik, Robert I. Liem

Research output: Contribution to journalArticlepeer-review

46 Scopus citations

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 languageEnglish (US)
Article numbere26369
JournalPediatric Blood and Cancer
Volume64
Issue number6
DOIs
StatePublished - Jun 2017
Externally publishedYes

Keywords

  • adherence
  • adolescents
  • compliance
  • health-related quality of life
  • hydroxyurea
  • patient-reported outcomes
  • patient-reported outcomes measurement information system
  • PROMIS
  • sickle cell anemia
  • sickle cell disease
  • young adults

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Hematology
  • Oncology

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