title: Barriers to hydroxyurea adherence and health-related quality of life in adolescents and young adults with sickle cell disease.
abstract: OBJECTIVE
  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 ©MMAS-8 (rs=-.38, P=.02) and VASdose(rs=-.25, P=.14) as well as MCV (rs=-.45, P=.01) and HbF% (rs=-.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.
authors.affiliation: Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.|Division of Hematology, Oncology and Stem Cell Transplant, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.|Department of Pediatrics, Division of Hematology/Oncology, Zagazig University Faculty of Medicine, Zagazig, Egypt.
authors.forename: Sherif M
authors.identifier: http://orcid.org/0000-0002-4739-265X
authors.initials: SM
authors.lastname: Badawy
authors.affiliation: Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.|Division of Hematology, Oncology and Stem Cell Transplant, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
authors.forename: Alexis A
authors.initials: AA
authors.lastname: Thompson
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
authors.forename: Frank J
authors.initials: FJ
authors.lastname: Penedo
authors.affiliation: Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.|Division of Hematology, Oncology and Stem Cell Transplant, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.|Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
authors.forename: Jin-Shei
authors.initials: JS
authors.lastname: Lai
authors.affiliation: Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.|Stanley Manne Children's Research Institute, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
authors.forename: Karen
authors.initials: K
authors.lastname: Rychlik
authors.affiliation: Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.|Division of Hematology, Oncology and Stem Cell Transplant, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
authors.forename: Robert I
authors.initials: RI
authors.lastname: Liem
mesh_terms: D000293:Adolescent; D000755:Anemia, Sickle Cell / Q000188:drug therapy* / Q000503:physiopathology / Q000523:psychology; D000986:Antisickling Agents / Q000627:therapeutic use*; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D006918:Hydroxyurea / Q000627:therapeutic use*; D008297:Male; D055118:Medication Adherence / Q000523:psychology*; D010147:Pain Measurement / Q000379:methods; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult; D016903:Drug Monitoring
chemical_list: D000986:Antisickling Agents; D006918:Hydroxyurea
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