Abstract
BackgroundUnderstanding patients’ views about medication is crucial to maximize adherence. Thalassemia is a congenital blood disorder requiring chronic blood transfusions and daily iron chelation therapy.MethodsThe 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.ResultsOf 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.ConclusionsDespite 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 identifierNCT00661804
Highlights
Understanding patients’ views about medication is crucial to maximize adherence
The aim of the present study is to summarize Beliefs in Medicine Questionnaire (BMQ) results for patients with thalassemia, compare beliefs in deferoxamine (DFO) vs. oral chelators, and assess effect on quality of life, anxiety, depression, and chelation adherence
We reported high chelation adherence in this thalassemia population, with an apparent surge in selfreported adherence rates with the recent introduction of alternative choices of oral chelators [24]
Summary
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. Thalassemia is a congenital blood disorder that is often managed with chronic blood transfusions, typically every 2–4 weeks, which leads to progressive iron overload. Iron chelation therapy is prescribed to manage the transfusional iron overload and attempt to prevent progressive organ failure (heart, endocrine, liver). Life expectancy is directly related to the quality of chelation interventions, patient adherence continues to be a problem in thalassemia. Patients’ concerns about their treatments and their beliefs in its necessity appear to be critical in understanding patient adherence practices. A second instrument, the Sensitive Soma Assessment Scale (SSAS) is another instrument that is designed to assess a patient’s perceived sensitivity to medicines, and this preconception is likely related to the report of sideeffects [16]
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
