TY - JOUR
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
N1 - Funding Information:
Acknowledgments This work was supported by the following NIH-NHLBI cooperative agreements: U01-HL65232 and NIH/NCRR UL1-RR-024134 to the Children’s Hospital of Philadelphia, U01-HL72291 and by Harvard Catalyst CTSC U-01RR025758 to Children’s Hospital, Boston, U01-HL65233 to University Health Network Toronto General Hospital, UL1RR024131-01to Children’s Hospital & Research Center Oakland, U01-HL65244 and CTSC UL1-RR024996 to Weill Medical College of Cornell University, and U01-HL65238 to New England Research Institutes. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NHLBI.
Publisher Copyright:
© 2014, Springer International Publishing Switzerland.
PY - 2014/10/1
Y1 - 2014/10/1
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.
AB - 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.
KW - Adherence
KW - Iron chelation
KW - Quality of life
KW - Thalassemia
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UR - http://www.scopus.com/inward/citedby.url?scp=84909641711&partnerID=8YFLogxK
U2 - 10.1007/s11136-014-0671-2
DO - 10.1007/s11136-014-0671-2
M3 - Article
C2 - 24682717
AN - SCOPUS:84909641711
SN - 0962-9343
VL - 23
SP - 2277
EP - 2288
JO - Quality of Life Research
JF - Quality of Life Research
IS - 8
ER -
