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

Sherif M Badawy; Alexis A Thompson; Jin-Shei Lai; Frank J Penedo; Karen Rychlik; Robert I Liem

doi:10.1002/pbc.26369

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

Sherif M Badawy^*, Alexis A Thompson, Jin-Shei Lai, Frank J Penedo, Karen Rychlik, Robert I Liem

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

37 Scopus citations

Abstract

Background: Complications related to sickle cell disease (SCD) result in significant declines in health-related quality of life (HRQOL). While hydroxyurea reduces SCD complications, adherence remains suboptimal. The study's objectives were to assess the feasibility of Internet-based electronic assessment of HRQOL in SCD clinic and to examine the relationship between HRQOL and hydroxyurea adherence in adolescents and young adults (AYAs) with SCD. Procedure: A cross-sectional survey was administered on tablets to 34 AYAs (12–22 years old) in a SCD clinic from January through December 2015. Study measures included Patient Reported Outcomes Measurement Information System (PROMIS^®) computerized adaptive testing and

Original language	English (US)
Article number	e26369
Journal	Pediatric Blood and Cancer
Volume	64
Issue number	6
DOIs	https://doi.org/10.1002/pbc.26369
State	Published - Jun 1 2017

Keywords

PROMIS
adherence
adolescents
compliance
health-related quality of life
hydroxyurea
patient-reported outcomes
patient-reported outcomes measurement information system
sickle cell anemia
sickle cell disease
young adults

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health
Hematology
Oncology

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10.1002/pbc.26369

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Cite this

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

abstract = "Background: Complications related to sickle cell disease (SCD) result in significant declines in health-related quality of life (HRQOL). While hydroxyurea reduces SCD complications, adherence remains suboptimal. The study's objectives were to assess the feasibility of Internet-based electronic assessment of HRQOL in SCD clinic and to examine the relationship between HRQOL and hydroxyurea adherence in adolescents and young adults (AYAs) with SCD. Procedure: A cross-sectional survey was administered on tablets to 34 AYAs (12–22 years old) in a SCD clinic from January through December 2015. Study measures included Patient Reported Outcomes Measurement Information System (PROMIS{\textregistered}) computerized adaptive testing and",

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AU - Thompson, Alexis A

AU - Lai, Jin-Shei

AU - Penedo, Frank J

AU - Rychlik, Karen

AU - Liem, Robert I

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N2 - Background: Complications related to sickle cell disease (SCD) result in significant declines in health-related quality of life (HRQOL). While hydroxyurea reduces SCD complications, adherence remains suboptimal. The study's objectives were to assess the feasibility of Internet-based electronic assessment of HRQOL in SCD clinic and to examine the relationship between HRQOL and hydroxyurea adherence in adolescents and young adults (AYAs) with SCD. Procedure: A cross-sectional survey was administered on tablets to 34 AYAs (12–22 years old) in a SCD clinic from January through December 2015. Study measures included Patient Reported Outcomes Measurement Information System (PROMIS®) computerized adaptive testing and

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