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Barriers to hydroxyurea adherence and health‐related quality of life in adolescents and young adults with sickle cell disease
Author(s) -
Badawy Sherif M.,
Thompson Alexis A.,
Penedo Frank J.,
Lai JinShei,
Rychlik Karen,
Liem Robert I.
Publication year - 2017
Publication title -
european journal of haematology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.904
H-Index - 84
eISSN - 1600-0609
pISSN - 0902-4441
DOI - 10.1111/ejh.12878
Subject(s) - medicine , quality of life (healthcare) , young adult , depression (economics) , disease , recall , medication adherence , cross sectional study , visual analogue scale , physical therapy , pathology , linguistics , philosophy , nursing , economics , macroeconomics
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 AYA s (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 © MMAS ‐8 ( r s =−.38, P =.02) and VAS dose ( r s =−.25, P =.14) as well as MCV ( r s =−.45, P =.01) and HbF% ( r s =−.36, P =.05), suggesting higher hydroxyurea adherence in patients with fewer barriers. Conclusions Patients with fewer barriers to hydroxyurea adherence were more likely to have higher adherence rates and better HRQOL scores. Routine assessment of hydroxyurea adherence and its related barriers could provide actionable information to improve adherence rates, HRQOL , and other clinical outcomes.