Beliefs about chelation among thalassemia patients

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

Beliefs of Jordanian Children with Thalassemia toward Using Iron Chelation Therapy

“…A previous study conducted by Trachtenberg et al [5] on patients with thalassemia revealed similar findings. In comparison with other chronic disorder, necessity of iron chelation was higher than that in patients with rheumatoid arthritis and concerns about chelation were lower than those patients with rheumatoid arthritis [6].…”

“…This high adherence to chelation therapy indicates that patients understand the importance of chelation therapy and the complications associated with not using the therapy. Previous study conducted on thalassemic patients found similar result [5]. However, this rating was based on self-administered questionnaire and therefore, it depended on participants' recall and they might overestimate their responses toward adherence.…”

“…Poor adherence to treatment increases the risk of complications, unnecessary health cost, and morbidity and mortality rates [5] [6]. According to Cao & Galanello [3] survival of individuals who have been well transfused and treated with appropriate chelation extends beyond the age of 30 years.…”

“…Studies found that patients with higher knowledge exhibited more compliance to treatment than insufficient knowledge patients [11]- [13]. Patients' adherence is still a problematic issue in thalassemia treatment [5]. In Jordan, There is a paucity of studies that examined children beliefs and adherence to this therapy.…”

Cost-effectiveness Analysis of Deferiprone and Deferasirox on Thalassemia Major Patients in Tangerang District Hospital, Indonesia

“…3 Therefore, an iron chelation therapy is required to prevent complications in other organs. 4 Currently, in Indonesia, there are three kinds of iron chelation drugs available, which are deferoxamine (DFO) given subcutaneously, deferiprone (DFP) and defarasirox (DFX) given orally. 2 DFP and DFX are more often used in hospitals because there are less expensive and the level of compliance is higher than DFO.…”