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 journalArticle

18 Citations (Scopus)

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 languageEnglish (US)
Article numbere26369
JournalPediatric Blood and Cancer
Volume64
Issue number6
DOIs
StatePublished - Jun 1 2017

Fingerprint

Hydroxyurea
Sickle Cell Anemia
Young Adult
Quality of Life
Information Systems
Internet
Tablets
Cross-Sectional Studies

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

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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{\circledR}) computerized adaptive testing and",
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AU - Badawy, Sherif M

AU - Thompson, Alexis A

AU - Lai, Jin-Shei

AU - Penedo, Frank J

AU - Rychlik, Karen

AU - Liem, Robert I

PY - 2017/6/1

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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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