Beliefs about chelation among thalassemia patients
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.
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.
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.
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.
Available from: Vanessa Cooper
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ABSTRACT: Patients' beliefs about treatment influence treatment engagement and adherence. The Necessity-Concerns Framework postulates that adherence is influenced by implicit judgements of personal need for the treatment (necessity beliefs) and concerns about the potential adverse consequences of taking it.
To assess the utility of the NCF in explaining nonadherence to prescribed medicines.
We searched EMBASE, Medline, PsycInfo, CDSR/DARE/CCT and CINAHL from January 1999 to April 2013 and handsearched reference sections from relevant articles.
Studies using the Beliefs about Medicines Questionnaire (BMQ) to examine perceptions of personal necessity for medication and concerns about potential adverse effects, in relation to a measure of adherence to medication.
Patients with long-term conditions.
Systematic review and meta-analysis of methodological quality was assessed by two independent reviewers. We pooled odds ratios for adherence using random effects models.
We identified 3777 studies, of which 94 (N = 25,072) fulfilled the inclusion criteria. Across studies, higher adherence was associated with stronger perceptions of necessity of treatment, OR = 1.742, 95% CI [1.569, 1.934], p<0.0001, and fewer Concerns about treatment, OR = 0.504, 95% CI: [0.450, 0.564], p<0.0001. These relationships remained significant when data were stratified by study size, the country in which the research was conducted and the type of adherence measure used.
Few prospective longitudinal studies using objective adherence measures were identified.
The Necessity-Concerns Framework is a useful conceptual model for understanding patients' perspectives on prescribed medicines. Taking account of patients' necessity beliefs and concerns could enhance the quality of prescribing by helping clinicians to engage patients in treatment decisions and support optimal adherence to appropriate prescriptions.
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ABSTRACT: Introduction: At least 40,000 people per year worldwide are born with beta-thalassemia. Patients with beta-thalassemia major are reliant on regular red blood cell transfusions for survival from a young age. For those with beta-thalassemia intermedia or hemoglobin (Hb) E/beta-thalassemia, symptoms range from mild clinical presentation to a more severe phenotype and patients are not necessarily transfusion-dependent. Areas covered: Here, beta-thalassemia treatment strategies including transfusion, splenectomy, fetal hemoglobin induction, hematopoietic stem-cell transplantation, in addition to potential future treatment options, are reviewed. Approaches for the monitoring and management of complications are also described. Expert opinion: The most important advances in the treatment of transfusion-dependent beta-thalassemia major patients since the advent of iron chelation therapy are the introduction of oral iron chelators in addition to technologies for the direct measurement of iron in organs. For non-transfusion-dependent patients with beta-thalassemia intermedia or HbE/beta-thalassemia, recent studies have highlighted the significance of iron overload-related complications and the increase in incidence with advancing age, prompting the development of much-needed clinical treatment guidelines. Future research should focus on improving the treatment of beta-thalassemia major patients to further extend survival and quality of life, and continued identification of beta-thalassemia intermedia or HbE/beta-thalassemia patients who may benefit from transfusion and iron chelation therapy.
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