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

*Corresponding author for this work

Research output: Contribution to journalArticle

28 Scopus citations


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
Issue number6
StatePublished - Jun 2017



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

ASJC Scopus subject areas

  • Hematology

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