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

24 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

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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

Cite this

Badawy, S. M., Thompson, A. A., Lai, J-S., Penedo, F. J., Rychlik, K., & Liem, R. I. (2017). Health-related quality of life and adherence to hydroxyurea in adolescents and young adults with sickle cell disease. Pediatric Blood and Cancer, 64(6), [e26369]. https://doi.org/10.1002/pbc.26369

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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 - Rychlik, Karen

AU - Liem, Robert I

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10.1002/pbc.26369