TY - JOUR
T1 - Beliefs about chelation among thalassemia patients
AU - Trachtenberg, Felicia L.
AU - Mednick, Lauren
AU - Kwiatkowski, Janet L.
AU - Neufeld, Ellis J.
AU - Haines, Dru
AU - Pakbaz, Zahra
AU - Thompson, Alexis A.
AU - Quinn, Charles T.
AU - Grady, Robert
AU - Sobota, Amy
AU - Olivieri, Nancy
AU - Horne, Robert
AU - Yamashita, Robert
N1 - Funding Information:
The following authors declare the following financial conflicts of interest. All other authors report no conflicts of interest. Ellis Neufeld: research funding from Novartis and Ferrokin Biosciences. Charles Quinn: advisory board member of ApoPharma.
Funding Information:
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.
PY - 2012/12/7
Y1 - 2012/12/7
N2 - Background: Understanding patients' views about medication is crucial to maximize adherence. Thalassemia is a congenital blood disorder requiring chronic blood transfusions and daily iron chelation therapy.Methods: The Beliefs in Medicine Questionnaire (BMQ) was used to assess beliefs in chelation in thalassemia patients from North America and London in the Thalassemia Longitudinal Cohort (TLC) of the Thalassemia Clinical Research Network (TCRN). Chelation adherence was based on patient report of doses administered out of those prescribed in the last four weeks.Results: Of 371 patients (ages 5-58y, mean 24y), 93% were transfused and 92% receiving chelation (26% deferoxamine (DFO; a slow subcutaneous infusion via portable pump), 63% oral, 11% combination). Patients expressed high " necessity" for transfusion (96%), DFO chelation (92%) and oral chelation (89%), with lower " concern" about treatment (48%, 39%, 19% respectively). Concern about oral chelation was significantly lower than that of DFO (p<0.001). Self-reported adherence to chelation was not associated with views about necessity or concerns, but negatively correlated with perceived sensitivity to DFO (Sensitive Soma scale; r=-0.23, p=0.01) and side effects of oral chelation (r=-0.14, p=0.04). High ferritin iron levels, potentially indicating lower adherence, were found in 41% of patients reporting low necessity of oral chelation compared to 24% reporting high necessity (p=0.048). Concerns about treatment were associated with lower quality of life and more symptoms of anxiety and depression.Conclusions: Despite their requirement for multimodal therapy, thalassemia patients have positive views about medicine, more so than in other disease populations. Patients may benefit from education about the tolerability of chelation and strategies to effectively cope with side effects, both of which might be beneficial in lowering body iron burden.Clinicaltrials.gov identifier: NCT00661804.
AB - Background: Understanding patients' views about medication is crucial to maximize adherence. Thalassemia is a congenital blood disorder requiring chronic blood transfusions and daily iron chelation therapy.Methods: The Beliefs in Medicine Questionnaire (BMQ) was used to assess beliefs in chelation in thalassemia patients from North America and London in the Thalassemia Longitudinal Cohort (TLC) of the Thalassemia Clinical Research Network (TCRN). Chelation adherence was based on patient report of doses administered out of those prescribed in the last four weeks.Results: Of 371 patients (ages 5-58y, mean 24y), 93% were transfused and 92% receiving chelation (26% deferoxamine (DFO; a slow subcutaneous infusion via portable pump), 63% oral, 11% combination). Patients expressed high " necessity" for transfusion (96%), DFO chelation (92%) and oral chelation (89%), with lower " concern" about treatment (48%, 39%, 19% respectively). Concern about oral chelation was significantly lower than that of DFO (p<0.001). Self-reported adherence to chelation was not associated with views about necessity or concerns, but negatively correlated with perceived sensitivity to DFO (Sensitive Soma scale; r=-0.23, p=0.01) and side effects of oral chelation (r=-0.14, p=0.04). High ferritin iron levels, potentially indicating lower adherence, were found in 41% of patients reporting low necessity of oral chelation compared to 24% reporting high necessity (p=0.048). Concerns about treatment were associated with lower quality of life and more symptoms of anxiety and depression.Conclusions: Despite their requirement for multimodal therapy, thalassemia patients have positive views about medicine, more so than in other disease populations. Patients may benefit from education about the tolerability of chelation and strategies to effectively cope with side effects, both of which might be beneficial in lowering body iron burden.Clinicaltrials.gov identifier: NCT00661804.
KW - Adherence
KW - Chelation
KW - Concerns
KW - Necessity
KW - Thalassemia
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U2 - 10.1186/1477-7525-10-148
DO - 10.1186/1477-7525-10-148
M3 - Article
C2 - 23216870
AN - SCOPUS:84870528094
VL - 10
JO - Health and Quality of Life Outcomes
JF - Health and Quality of Life Outcomes
SN - 1477-7525
M1 - 148
ER -