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Gepubliceerd in:

01-10-2014

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

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

Gepubliceerd in: Quality of Life Research | Uitgave 8/2014

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.

vorige artikel Mixture modelling analysis of one-month disability after stroke: stroke outcomes study (SOS1)

volgende artikel The prediction of quality of life by physical, psychological and social components of frailty in community-dwelling older people

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Titel: Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia
Auteurs: Felicia L. Trachtenberg
Eric Gerstenberger
Yan Xu
Lauren Mednick
Amy Sobota
Hannah Ware
Alexis A. Thompson
Ellis J. Neufeld
Robert Yamashita
Publicatiedatum: 01-10-2014
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 8/2014
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-014-0671-2

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Abstract

Purpose

Methods

Results

Conclusions

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