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

19 Citations (Scopus)

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 1 2017

Fingerprint

Hydroxyurea
Sickle Cell Anemia
Young Adult
Quality of Life
Visual Analog Scale
Information Systems
Fatigue
Cross-Sectional Studies
Depression
Pain
Surveys and Questionnaires
Patient Reported Outcome Measures

Keywords

  • PROMIS
  • 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

Cite this

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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",
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T1 - Barriers to hydroxyurea adherence and health-related quality of life in adolescents and young adults with sickle cell disease

AU - Badawy, Sherif M

AU - Thompson, Alexis A

AU - Penedo, Frank J

AU - Lai, Jin-Shei

AU - Rychlik, Karen

AU - Liem, Robert I

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N2 - 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

AB - 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

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