Dear Editor
Non-adherence to treatment is a major worldwide concern for healthcare providers. This is especially important in chronic diseases where patients have to follow the prescribed treatment for a long time [
1,
2]. Adherence to the treatment of patients with chronic diseases in developed countries is at an average of 50%, and this rate is lower in developing countries [
3]. Despite many studies on non-adherence to treatment, it has remained an unresolved issue for the past four decades [
4]. On the other hand, commonly used interventions and practices have not successfully improved adherence to prescribed treatments in patients with chronic diseases. Moreover, the available theories of adherence have little explanatory power to justify this issue [
5].
β-thalassemia major (β-TM) is a chronic, complex, and debilitating disease. Patients with β-TM need regular treatment with blood transfusions chelation therapy, and continuous medical supervision [
6]. Therefore, appropriate adherence to treatment is a key component of this disease management. However, poor adherence to treatment remains a significant problem in patients with β-TM [
7]. The results of previous studies indicate that despite all the interventions made to improve adherence to the treatment, 30% to 50% of these patients exhibited poor adherence to prescribed treatments which is associated with worsening of the patients’ clinical status and outcome [
8, 9]. On the other hand, better adherence to the treatment in β-TM patients results in better patient-related outcomes [
10]. Therefore, due to the relatively high rate of non-adherence to treatment in patients with β-TM and its potential debilitating and negative consequences, conducting further studies to identify the various aspects of treatment adherence is an important step toward improving health outcomes in these patients [
11].
The process of adherence to treatment can be influenced by a variety of factors, including patient-related, disease-related, and socio-cultural factors [
12]. In various previous studies on adherence to the treatment, aspects of the disease and its management that are outside of biomedical causes have not been well studied; therefore, it should be the subject of further studies [
11]. Paying more attention to patients’ experience of the disease and the meaning of prescribed treatment in their daily lives is an effective approach to investigating the phenomenon of treatment adherence [
2]. Adhering to a treatment is not a simple practical or technical task, but a part of daily life experiences with a chronic illness. Accordingly, to assess and improve adherence to the treatment, the personal and socio-cultural context of patients should be evaluated first [
13,
14]. Studies in patients with β-TM have often dealt with the disease and its physical, social, and psychological consequences and treatment separately. However, to survive, these patients must use a grueling treatment regimen for life, and they also need continuous evaluation and monitoring of care and treatment, which poses serious challenges in following their treatment regimen [
11].
Our knowledge about the process, context, and effective factors of adherence to the treatment in patients with β-TM is not adequate [
15]. The persistence of this problem as a serious and growing health, family, and social problem after decades of studies and interventions, can be due to the type of perspective and studies related to this phenomenon [
11]. Interactions between patients, family, community, and healthcare providers play a key role in the adherence to treatment in patients with β-TM, but the role and interaction of these factors in the available studies have not been well explained [
16]. On the other hand, currently, the value of the client-centered approach and participation of patients in care planning and decision-making processes has been widely highlighted. Since each person’s performance is shaped by social structures, cultural contexts, and personal experiences and beliefs, certainly without knowing the experience of patients, their family members, and healthcare providers, it is not possible to design the most appropriate care and therapeutic plan for improving adherence to treatment in these patients [
17].Therefore, for the study of complex phenomena, such as adherence to treatment, qualitative research is an appropriate and responsive method [
2].
Despite the importance and beneficial role of the results of quantitative studies in this regard, conducting qualitative studies and its results can provide richly detailed insights and contextual explanations for many of the challenges faced by β-TM patients in the process of treatment adherence and potentially help healthcare providers for designing effective strategies for improving adherence to recommended treatments.
References
- Jin J, Sklar GE, Min Sen Oh V, Chuen Li S. Factors affecting therapeutic compliance: A review from the patient’s perspective. Ther Clin Risk Manag. 2008; 4(1):269-86. [DOI:10.2147/TCRM.S1458] [PMID]
- Vermeire E, Hearnshaw H, Van Royen P, Denekens J. Patient adherence to treatment: Three decades of research. A comprehensive review. J Clin Pharm Ther. 2001; 26(5):331-42. [DOI:10.1046/j.1365-2710.2001.00363.x] [PMID]
- Mathes T, Pieper D, Antoine SL, Eikermann M. 50% adherence of patients suffering chronic conditions--where is the evidence? Ger Med Sci. 2012; 10:Doc16. [PMID]
- Haynes RB, Ackloo E, Sahota N, McDonald HP, Yao X. Interventions for enhancing medication adherence. Cochrane Database Syst Rev. 2008; (2):CD000011. [DOI:10.1002/14651858.CD000011.pub3] [PMID]
- Lehane E, McCarthy G. Intentional and unintentional medication non-adherence: A comprehensive framework for clinical research and practice? A discussion paper. Int J Nurs Stud. 2007; 44(8):1468-77. [DOI:10.1016/j.ijnurstu.2006.07.010] [PMID]
- Darvishi Khezri H, Emami Zeydi A, Sharifi H, Jalali H. Is Vitamin C supplementation in patients with β-Thalassemia major beneficial or detrimental? Hemoglobin. 2016; 40(4):293-4. [DOI:10.1080/03630269.2016.1190373] [PMID]
- Theppornpitak K, Trakarnsanga B, Lauhasurayotin S, Poparn H, Chiengthong K, Sosothikul D, et al. A study to assess and improve adherence to iron chelation therapy in transfusion-dependent thalassemia patients. Hemoglobin. 2021; 45(3):171-4. [DOI:10.1080/03630269.2021.1934010] [PMID]
- Ward A, Caro JJ, Green TC, Huybrechts K, Arana A, Wait S, et al. An international survey of patients with thalassemia major and their views about sustaining life-long desferrioxamine use. BMC Clin Pharmacol. 2002; 2:3. [DOI:10.1186/1472-6904-2-3] [PMID]
- Lee WS, Toh TH, Chai PF, Soo TL. Self-reported level of and factors influencing the compliance to desferrioxamine therapy in multitransfused thalassaemias. J Paediatr Child Health. 2011; 47(8):535-40. [DOI:10.1111/j.1440-1754.2011.02017.x] [PMID]
- Mokhtar GM, Gadallah M, El Sherif NH, Ali HT. Morbidities and mortality in transfusion-dependent Beta-thalassemia patients (single-center experience). Pediatr Hematol Oncol. 2013; 30(2):93-103. [DOI:10.3109/08880018.2012.752054] [PMID]
- Emami Zeydi A, Karimi Moonaghi H, Heydari A. Exploring Iranian β-Thalassemia major patients’ perception of barriers and facilitators of adherence to treatment: A qualitative study. Electron Physician. 2017; 9(12):6102-10. [DOI:10.19082/6102] [PMID]
- Kvarnström K, Westerholm A, Airaksinen M, Liira H. Factors Contributing to medication adherence in patients with a chronic condition: A scoping review of qualitative research. Pharmaceutics. 2021; 13(7):1100. [DOI:10.3390/pharmaceutics13071100] [PMID]
- Atkin K, Ahmad W. Pumping iron: Compliance with chelation therapy among young people who have thalassaemia major. Sociol Health Illn. 2000; 22(4):500-24. [Link]
- Shahin W, Kennedy GA, Stupans I. The impact of personal and cultural beliefs on medication adherence of patients with chronic illnesses: A systematic review. Patient Prefer Adherence. 2019; 13:1019-35. [DOI:10.2147/PPA.S212046] [PMID]
- Abu Shosha GM. Beliefs and adherence associated with oral and infusion chelation therapies in Jordanian children and adolescents with Thalassemia Major: A comparative study. J Pediatr Hematol Oncol. 2019; 41(3):210-4. [DOI:10.1097/MPH.0000000000001399] [PMID]
- Chong CC, Redzuan AM, Sathar J, Makmor-Bakry M. Patient perspective on iron chelation therapy: Barriers and facilitators of medication adherence. J Patient Exp. 2021; 8:2374373521996958. [DOI:10.1177/2374373521996958] [PMID]
- Robinson JH, Callister LC, Berry JA, Dearing KA. Patient-centered care and adherence: Definitions and applications to improve outcomes. J Am Acad Nurse Pract. 2008; 20(12):600-7. [DOI:10.1111/j.1745-7599.2008.00360.x] [PMID]