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

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

Research output: Contribution to journalArticlepeer-review

36 Scopus citations

Abstract

Objectives: To identify barriers to hydroxyurea adherence (negative beliefs, access, and/or recall barriers), and their relationship to adherence rates and health-related quality of life (HRQOL) among adolescents and young adults (AYA) with sickle cell disease (SCD). Methods: A cross-sectional survey was administered to 34 AYAs (12-22 years old) in SCD clinics from January to December 2015. Study measures included Brief Medication Questionnaire, Modified Morisky Adherence Scale 8-items, visual analog scale, and Patient Reported Outcomes Measurement Information System. Results: Participants (59% male; 91% Black) had a median age of 13.5 years (IQR 12-18). Participants reported negative beliefs (32%), recall barriers (44%), and access barriers (32%). Participants with recall barriers reported worse pain (P=.02), fatigue (P=.05), and depression (P=.05). The number of adherence barriers inversely correlated with adherence level using

Original languageEnglish (US)
Pages (from-to)608-614
Number of pages7
JournalEuropean Journal of Haematology
Volume98
Issue number6
DOIs
StatePublished - Jun 2017
Externally publishedYes

Keywords

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

ASJC Scopus subject areas

  • Hematology

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