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

doi:10.1111/ejh.12878

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 journal › Article › peer-review

52 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 language	English (US)
Pages (from-to)	608-614
Number of pages	7
Journal	European Journal of Haematology
Volume	98
Issue number	6
DOIs	https://doi.org/10.1111/ejh.12878
State	Published - Jun 2017

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

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10.1111/ejh.12878

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

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",

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",

author = "Badawy, {Sherif M.} and Thompson, {Alexis A.} and Penedo, {Frank J.} and Lai, {Jin Shei} and Karen Rychlik and Liem, {Robert I.}",

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AU - Badawy, Sherif M.

AU - Thompson, Alexis A.

AU - Penedo, Frank J.

AU - Lai, Jin Shei

AU - Rychlik, Karen

AU - Liem, Robert I.

PY - 2017/6

Y1 - 2017/6

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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KW - health-related quality of life

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KW - patient reported outcomes

KW - patient reported outcomes measurement information system

KW - sickle cell

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

Abstract

Keywords

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