Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia

Felicia L. Trachtenberg*, Eric Gerstenberger, Yan Xu, Lauren Mednick, Amy Sobota, Hannah Ware, Alexis A. Thompson, Ellis J. Neufeld, Robert Yamashita

*Corresponding author for this work

Research output: Contribution to journalArticle

26 Citations (Scopus)

Abstract

Purpose: Thalassemia, a chronic blood disease, necessitates life-long adherence to blood transfusions and chelation therapy to reduce iron overload. We examine stability of health-related quality of life (HRQOL) in thalassemia and adherence to chelation therapy over time, especially after changes in chelator choice. Methods: Thalassemia Longitudinal Cohort participants in the USA, UK, and Canada completed the SF-36v2 (ages 14+) and the PF-28 CHQ (parents of children <14 years). Chelation adherence was defined as self-reported percent of doses administered in the last 4 weeks. Results: Two hundred and fifty-eight adults/adolescents (mean 29.7 years) and 133 children (mean 8.5 years) completed a mean of 2.8-years follow-up. Children made few chelator changes, whereas a mean of 2.2 changes was observed among the 37 % of adults/adolescents who made chelator changes, mainly due to patient preference or medical necessity. Physical HRQOL improved among those with lower iron burden (better health status) at baseline who made a single change in chelator, but declined among participants with multiple changes and/or high iron burden (worse health status). Mental health improved among participants with lower iron burden, but iron overload was negatively associated with social functioning. Adherence did not significantly change over follow-up except for an increase after a change from deferoxamine (DFO) infusion to oral deferasirox (p = 0.03). Predictors of lower adherence for adults/adolescents at follow-up included side effects, smoking, younger age, problems preparing DFO, increased number of days per week DFO prescribed, and lower physical quality of life. Conclusions: Strategies to balance medical needs with family, work, and personal life may assist in adherence.

Original languageEnglish (US)
Pages (from-to)2277-2288
Number of pages12
JournalQuality of Life Research
Volume23
Issue number8
DOIs
StatePublished - Oct 1 2014

Fingerprint

Thalassemia
Chelating Agents
Deferoxamine
Quality of Life
Chelation Therapy
Iron Overload
Iron
Health Status
Patient Preference
Hematologic Diseases
Blood Transfusion
Canada
Mental Health
Chronic Disease
Parents
Smoking

Keywords

  • Adherence
  • Iron chelation
  • Quality of life
  • Thalassemia

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Trachtenberg, F. L., Gerstenberger, E., Xu, Y., Mednick, L., Sobota, A., Ware, H., ... Yamashita, R. (2014). Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia. Quality of Life Research, 23(8), 2277-2288. https://doi.org/10.1007/s11136-014-0671-2
Trachtenberg, Felicia L. ; Gerstenberger, Eric ; Xu, Yan ; Mednick, Lauren ; Sobota, Amy ; Ware, Hannah ; Thompson, Alexis A. ; Neufeld, Ellis J. ; Yamashita, Robert. / Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia. In: Quality of Life Research. 2014 ; Vol. 23, No. 8. pp. 2277-2288.
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Trachtenberg, FL, Gerstenberger, E, Xu, Y, Mednick, L, Sobota, A, Ware, H, Thompson, AA, Neufeld, EJ & Yamashita, R 2014, 'Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia', Quality of Life Research, vol. 23, no. 8, pp. 2277-2288. https://doi.org/10.1007/s11136-014-0671-2

Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia. / Trachtenberg, Felicia L.; Gerstenberger, Eric; Xu, Yan; Mednick, Lauren; Sobota, Amy; Ware, Hannah; Thompson, Alexis A.; Neufeld, Ellis J.; Yamashita, Robert.

In: Quality of Life Research, Vol. 23, No. 8, 01.10.2014, p. 2277-2288.

Research output: Contribution to journalArticle

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T1 - Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia

AU - Trachtenberg, Felicia L.

AU - Gerstenberger, Eric

AU - Xu, Yan

AU - Mednick, Lauren

AU - Sobota, Amy

AU - Ware, Hannah

AU - Thompson, Alexis A.

AU - Neufeld, Ellis J.

AU - Yamashita, Robert

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N2 - Purpose: Thalassemia, a chronic blood disease, necessitates life-long adherence to blood transfusions and chelation therapy to reduce iron overload. We examine stability of health-related quality of life (HRQOL) in thalassemia and adherence to chelation therapy over time, especially after changes in chelator choice. Methods: Thalassemia Longitudinal Cohort participants in the USA, UK, and Canada completed the SF-36v2 (ages 14+) and the PF-28 CHQ (parents of children <14 years). Chelation adherence was defined as self-reported percent of doses administered in the last 4 weeks. Results: Two hundred and fifty-eight adults/adolescents (mean 29.7 years) and 133 children (mean 8.5 years) completed a mean of 2.8-years follow-up. Children made few chelator changes, whereas a mean of 2.2 changes was observed among the 37 % of adults/adolescents who made chelator changes, mainly due to patient preference or medical necessity. Physical HRQOL improved among those with lower iron burden (better health status) at baseline who made a single change in chelator, but declined among participants with multiple changes and/or high iron burden (worse health status). Mental health improved among participants with lower iron burden, but iron overload was negatively associated with social functioning. Adherence did not significantly change over follow-up except for an increase after a change from deferoxamine (DFO) infusion to oral deferasirox (p = 0.03). Predictors of lower adherence for adults/adolescents at follow-up included side effects, smoking, younger age, problems preparing DFO, increased number of days per week DFO prescribed, and lower physical quality of life. Conclusions: Strategies to balance medical needs with family, work, and personal life may assist in adherence.

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Trachtenberg FL, Gerstenberger E, Xu Y, Mednick L, Sobota A, Ware H et al. Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia. Quality of Life Research. 2014 Oct 1;23(8):2277-2288. https://doi.org/10.1007/s11136-014-0671-2