Archive \ Volume.14 2023 Issue 4

Adherence and Health-related Quality of Life of Transfusion-Dependent Thalassemia Patients

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Abstract

Adherence to iron chelation therapy (ICT) is fundamental for preventing iron overload complications and maintaining health-related quality of life (HRQoL) in transfusion-dependent thalassemia (TDT) patients. This study aimed to evaluate adherence, HRQoL, and their association among Malaysian TDT patients. Cross-sectional research was performed among TDT patients aged 18 years and above in Hospital Ampang, Selangor. The adherence and the HRQoL (SF-36) were evaluated using validated instruments. Correlation analyses were carried out to determine the association between ICT adherence and HRQoL. The study recruited 162 patients, with 46.91% (N=76) of respondents reporting being adherent. The mean SF-36 score for TDT patients is 74.58. Remarkably, adherent patients exhibit significantly higher HRQoL (mean SF-36 score 79.21) assessed by the SF-36 questionnaire versus nonadherent patients (mean SF-36 score 69.47) (p=0.00). The findings also revealed a significant positive correlation between female (p=0.032), employed (p=0.003), and age (p=0.050) factors with the patient’s HRQoL. The rate of ICT adherence for adult TDT patients is suboptimal and non-adherent to ICT has significantly compromised HRQoL. Enhancing the rate of ICT adherence through interventions such as patient counseling and support programs may lead to enhanced HRQoL outcomes for the TDT population.


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Vancouver
Jin LW, Tahir NAM, Islahudin F, Chuen LS. Adherence and Health-related Quality of Life of Transfusion-Dependent Thalassemia Patients. Arch Pharm Pract. 2023;14(4):89-95. https://doi.org/10.51847/LXofvYDvl2
APA
Jin, L. W., Tahir, N. A. M., Islahudin, F., & Chuen, L. S. (2023). Adherence and Health-related Quality of Life of Transfusion-Dependent Thalassemia Patients. Archives of Pharmacy Practice, 14(4), 89-95. https://doi.org/10.51847/LXofvYDvl2

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References
  1. 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.
  2. Cramer JA, Roy A, Burrell A, Fairchild CJ, Fuldeore MJ, Ollendorf DA, et al. Medication compliance and persistence: terminology and definitions. Value Health. 2008;11(1):44-7.
  3. Vrijens B, De Geest S, Hughes DA, Przemyslaw K, Demonceau J, Ruppar T, et al. A new taxonomy for describing and defining adherence to medications. Br J Clin Pharmacol. 2012;73(5):691-705.
  4. Hatah E, Rahim N, Makmor-Bakry M, Mohamed Shah N, Ahmad M, Haron N, et al. Development and validation of Malaysia Medication Adherence Assessment Tool (MyMAAT) for diabetic patients. PLoS ONE. 2020;15(11):e0241909.
  5. Nguyen TM, La Caze A, Cottrell N. What are validated self-report adherence scales really measuring?: a systematic review. Br J Clin Pharmacol. 2014;77(3):427-45.
  6. 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.
  7. Chai ASC, Draman N, Mohd Yusoff SS, Azman NF, Zulkifli MM, Yaacob NM, et al. Non-Compliance to Iron Chelation Therapy in Patients with Transfusion-Dependent Thalassaemia. Pediatr Hematol Oncol J. 2021;6(4):207-15.
  8. Sukhmani S, Shruti K, Priyanka D, Namita B, Praveen S. Adherence to Iron Chelation Therapy and Its Determinants. Int J Hematol-Oncol Stem Cell Res. 2021;15(1):27.
  9. Mahmoud RA, Khodeary A, Farhan MS. Detection of Endocrine Disorders in Young Children with Multi-Transfused Thalassemia Major. Ital J Pediatr. 2021;47(1):165.
  10. Yassouf MY, Alquobaili F, Kabalan Y, Mukhalalaty Y. Compliance with Deferoxamine Therapy and Thyroid Dysfunction of Patients with beta-Thalassemia Major in Syria. Hemoglobin. 2019;43(3):218-21.
  11. Pattanashetti M, Mugali J, Pattanashetty N, Patil S. A Study of Severity of Depression in Thalassemia Patients. Int J Indian Psychol. 2017;4(2):e05.
  12. Arian M, Mirmohammadkhani M, Ghorbani R, Soleimani M. Health-Related Quality of Life (HRQoL) in Beta-Thalassemia Major (beta-TM) Patients assessed by 36-Item Short Form Health Survey (SF-36): a Meta-Analysis. Qual Life Res. 2019;28(2):321-34.
  13. Martin LR, Williams SL, Haskard KB, DiMatteo MR. The Challenge of Patient Adherence. Ther Clin Risk Manag. 2005;1(3):189-99.
  14. Raosoft. Sample Size Calculator. 2004. Available from: http://www.raosoft.com/samplesize.html.
  15. Lam JCM, Lee SY, Koh PL, Fong SZ, Abdul-Kadir NI, Lim CY, et al. Clinical and Health-Related Quality of Life Outcomes of Transfusion-Dependent Thalassaemia Patients in Singapore. Blood Cells Mol Dis. 2021;88:102547.
  16. RAND. Medical outcomes study: 36-item short form survey scoring instructions. 2009. Available from: http://www.rand.org/health/surveys_tools/mos/mos_core_36item_scoring.html.
  17. Musa AF, Yasin MSM, Smith J, Yakub MA, Nordin RB. The Malay version of SF-36 health survey instrument: testing data quality, scaling assumptions, reliability and validity in post-coronary artery bypass grafting (CABG) surgery patients at the National Heart Institute (Institut Jantung Negara-IJN), Kuala Lumpur. Health Qual Life Outcomes. 2021;19(1):50.
  18. Bazi A, Sargazi-Aval O, Safa A. Health-related Quality of Life and Associated Factors Among Thalassemia Major Patients, Southeast of Iran. J Pediatr Hematol/Oncol. 2017;39(7):513-7.
  19. 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.
  20. Reddy PS, Locke M, Badawy SM. A Systematic Review of Adherence to Iron Chelation Therapy among Children and Adolescents with Thalassemia. Ann Med. 2022;54(1):326-42.
  21. Haghpanah S, Zarei T, Zahedi Z, Karimi M. Compliance and Satisfaction with Deferasirox (Exjade®) Compared with Deferoxamine in Patients with Transfusion-Dependent Beta-Thalassemia. Hematology. 2014;19(4):187-91.
  22. Elalfy MS, Adly AM, Wali Y, Tony S, Samir A, Elhenawy YI. Efficacy and Safety of a Novel Combination of Two Oral Chelators Deferasirox/Deferiprone over Deferoxamine/Deferiprone in Severely Iron Overloaded Young Beta Thalassemia Major Patients. Eur J Haematol. 2015;95(5):411-20.
  23. Al-Refaie FN, Wicken DG. Serum Non-transferrin-bound Iron in Beta-Thalassaemia Major Patients Treated with Desferrioxamine and L1. Br J Haematol. 1992(82):431-6.
  24. Arboretti R, Tognoni G, Alberti D, Italian Colaborative Group on T. Pharmacosurveillance and Quality of Care of Thalassaemic Patients. Eur J Clin Pharmacol. 2001;56(12):915-22.
  25. Haghpanah S, Nasirabadi S, Ghaffarpasand F, Karami R, Mahmoodi M, Parand S, et al. Quality of Life among Iranian Patients with Beta-Thalassemia Major Using the SF-36 Questionnaire. Sao Paulo Med J. 2013;131(3):166-72.
  26. Kidson-Gerber GL, Francis S, Lindeman R. Management and Clinical Outcomes of Transfusion-Dependent Thalassaemia Major in an Australian Tertiary Referral Clinic. Med J Aust. 2008;188(2):72-5.
  27. Lee WS, Toh TH, Chai P, Soo T. Self-Reported Level of and Factors Influencing The Compliance to Desferrioxamine Therapy in Multitransfused Thalassaemias. J Paediatr Child Health. 2011;47(8):535-40.
  28. Richardson ME, Matthews RN, Alison JF, Menahem S, Mitvalsky J, Byrt E, et al. Prevention of Heart Disease by Subcutaneous Desferoxamine in Patients with Thalassaemia Major. Aust N Z J Med. 1993;23(6):656-61.
  29. Wolfe L, Olivieri N, Sallan D, Colan S, Rose V, Propper R, et al. Prevention of Cardiac Disease by Subcutaneous Deferoxamine in Patients with Thalassemia Major. N Engl J Med. 1985;312(25):1600-3.
  30. Hammond J, Thompson AA, Fogel MA, Hammond K, Kokroko J, Kwiatkowski JL. Combination Oral Chelation in Adult Patients with Transfusion-dependent Thalassemia and High Iron Burden. J Pediatr Hematol/Oncol. 2019;41(1):e47-50.
  31. Dahlui M, Hishamshah MI, Rahman AJ, Aljunid SM. Quality of life in transfusion-dependent thalassaemia patients on desferrioxamine treatment. Singapore Med J. 2009;50(8):794.
  32. Sandnes M, Ulvik RJ, Vorland M, Reikvam H. Hyperferritinemia- A Clinical Overview. J Clin Med. 2021;10(9):2008.
  33. Sobota A, Yamashita R, Xu Y, Trachtenberg F, Kohlbry P, Kleinert DA, et al. Quality of Life in Thalassemia: A Comparison of SF-36 Results from the Thalassemia Longitudinal Cohort to Reported Literature and the U.S. Norms. Am J Hematol. 2011;86(1):92-5.
  34. Philip KEJ, Polkey MI, Hopkinson NS, Steptoe A, Fancourt D. Social isolation, loneliness and physical performance in older-adults: fixed effects analyses of a cohort study. Sci Rep. 2020;10(1):13908.
  35. Montazeri A, Goshtasebi A, Vahdaninia M. The Short Form Health Survey (SF-36): Translation and validation study of the Iranian version. Qual Life Res. 2005;14:875-82.
  36. Hajian-Tilaki K, Heidari B, Hajian-Tilaki A. Are Gender Differences in Health-related Quality of Life Attributable to Sociodemographic Characteristics and Chronic Disease Conditions in Elderly People? Int J Prev Med. 2017;8:95.
  37. Badr HE, Rao S, Manee F. Gender differences in quality of life, physical activity, and risk of hypertension among sedentary occupation workers. Qual Life Res. 2021;30(5):1365-77.
  38. Lund RS, Karlsen TI, Hofso D, Fredheim JM, Roislien J, Sandbu R, et al. Employment is associated with the health-related quality of life of morbidly obese persons. Obes Surg. 2011;21(11):1704-9.
  39. Rueda S, Raboud J, Mustard C, Bayoumi A, Lavis JN, Rourke SB. Employment status is associated with both physical and mental health quality of life in people living with HIV. AIDS Care. 2011;23(4):435-43.
  40. Kakinuma Y. Financial literacy and quality of life: a moderated mediation approach of fintech adoption and leisure. Int J Soc Econ. 2022;49(12):1713-26.
  41. Barnett NL, Flora K. Patient-centred consultations in a dispensary setting: a learning journey. Eur J Hosp Pharm. 2017;24(2):107-9.
  42. Porter JB, Evangeli M, El-Beshlawy A. Challenges of adherence and persistence with iron chelation therapy. Int J Hematol. 2011;94(5):453-60.

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