Barriers to adherence to iron chelation therapy among adolescent with transfusion dependent thalassemia

Abstract

Study backgroundThalassemia is the commonest genetic blood disorder in Malaysia which requires life-long blood transfusions. From a total of 7,984 thalassemia patients in Malaysia, adolescent age group account for the highest number of patients (2,680 patients, 33.57%). In developed countries, the average rate of adherence to long-term treatment among children and adolescents is only 58%. Sub-optimal adherence to iron chelation therapy may impact the outcome and quality of life in these patients. Thus, assessing adherence level and identification of risk factors for non-adherence is essential in optimizing management.ObjectivesTo determine the association between mean serum ferritin level with self-reported level of adherence to iron chelation therapy in transfusion dependent thalassemia (TDT) adolescents in Hospital Tengku Ampuan Afzan (HTAA), Kuantan and Pusat Perubatan Universiti Kebangsaan Malaysia (PPUKM), Cheras; to determine the association between socio-demographic factors and patients’ knowledge on thalassemia and iron chelation therapy with the level of adherence.Materials and methodsThis was a cross-sectional study conducted between 1st March 2019 and 31st March 2020. Data was collected through face-to-face interview by a single interviewer during the thalassemia clinic follow up, with content validated questionnaires. The questionnaires comprised four sections which included socio-demographic data, medication adherence questionnaire, knowledge of disease, and clinical characteristics of the participants.ResultsA total of 70 participants were recruited. Results showed that only 51.4% of participants had good adherence to iron chelation therapy. There was a significant association between monthly household incomes of the family with the level of adherence to iron chelation (p-value 0.006). There was also an association between the mean serum ferritin levels with total Adherence Starts with Knowledge (ASK-12) score (p-value 0.001). However, there was no association between knowledge on thalassemia with the level of adherence.ConclusionAdherence to iron chelation was generally unsatisfactory amongst adolescents with TDT as only 51.4% had good adherence. Low monthly household income of the family may affect adherence to iron chelation therapy in TDT patients. As adherence remains to be an issue amongst adolescent thalassemia patients, management should include regular and objective assessments to address this problem so as to optimize patient outcome.

Drug-related problems among transfusion-dependent thalassemia patients: A real-world evidence study

“…Furthermore, most patients in our study were observed to have an appropriate iron chelation regimen doses optimized based on the body weight of patients, but the IOL problem in TDT patients remained unresolved as reflected by the suboptimal control in serum ferritin level among 55% of the patients. We believe that the suboptimal treatment effect was likely due to patient non-adherence, as most patients were on DFO which has long been associated with poor adherence ( Porter, 2001 ; Mohd Ibrahim et al, 2020 ; Mohamed et al, 2022 ). Nevertheless, as the cause of DRP was not evaluated in our study, further studies are required to confirm this finding.…”

Understanding the Intricacies of Iron Overload Associated With β-Thalassemia: A Comprehensive Review

“…No significant correlations (p=0.87) were found [124]. The adherence to the iron chelation therapies in India has been found to be significantly higher than that of the adolescents of other South Asian countries like Malaysia (51.4%) [125]. Various reasons have been elucidated for the non-adherence to the iron chelation therapies including poor family support, low family income as well as side effects of the iron chelators [121].…”