Original Article

Adherence to Iron Chelation Therapy and Its Determinants


Background: Thalassemia is a chronic disease requiring lifelong treatment. The adherence to regular iron chelation therapy is important to ensure complication-free survival and good quality of life.

The study aim to assess the adherence to iron chelation therapy (ICT) in patients with transfusion-dependent thalassemia (TDT), evaluate various causes of non-adherence and study the impact of non-adherence on the prevalence of complications secondary to iron overload.

Materials and Methods: Patients with TDT on ICT for > 6 months were enrolled in the study. Hospital records were reviewed for demographic details, iron overload status, treatment details, and the prevalence of complications. A study questionnaire was used to collect information on adherence to ICT, knowledge of patients, and the possible reasons for non-adherence.  

Results:  A total of 215 patients with a mean age of 15.07+7.68 years and an M: F ratio of 2.2:1 were included in the study. Non-adherence to ICT was found in 10.7% of patients. Serum ferritin levels were significantly higher in the non-adherent group (3129.8+1573.2 µg/l) than the adherent population (2013.1+1277.1 µg/l). Cardiac as well as severe liver iron overload was higher in the non-adherent patients. No correlation was found between disease knowledge and adherence to ICT. Difficulties in drug administration and many medicines to be taken daily were statistically significant reasons for non-adherence. There was no difference in the co-morbidities arising due to the iron overload in the two groups.

Conclusion: Nearly 11% of patients with TDT were non-adherent to ICT. Non-adherence results in higher iron overload. 

ed. Guidelines for the Management of Transfusion Dependent Thalassaemia, 3rd Edition; Thalassemia International Federation, Nicosia, Cyprus. 2014.
2. Colah R, Italia K, Gorakshakar A. Burden of thalassemia in India: The road map for control. J Pediatr Hematol Oncol. 2017; 4(2):79-84.
3. Mathew A, Sobti PC. The burden of thalassemia in Punjab: A roadmap forward. J Pediatr Hematol Oncol. 2017; 4(2):85-7.
4. Modell B, Khan M, Darlison M. Survival in β-thalassemia major in the UK: data from the UK Thalassaemia Register. Lancet. 2000; 355(9220):2051-2.
5. Abetz L, Baladi JF, Jones P, et al. The impact of iron overload and its treatment on quality of life: results from a literature review. Health Qual Life Outcomes. 2006; 4:73.
6. Belhoul KM, Bakir ML, Saned MS, et al. Serum ferritin levels and endocrinopathy in medically treated patients with β thalassemia major. Ann Hematol. 2012;91(7):1107-14.
7. Porter JB, Evangeli M, El-Beshlawy A. Challenges of adherence and persistence with ICT. Int J Hematol. 2011;94(5):453-60.
8. Kannan S, Singh A. Compliance score as a monitoring tool to promote treatment adherence in children with thalassemia for improved physical growth. Asian J Transfus Sci. 2017; 11(2):108-114.
9. Trachtenberg FL, Mednick L, Kwiatkowski JL, et al. Beliefs about chelation among thalassemia patients. Health Qual Life Outcomes. 2012;10:148.
10. Jeesh A, Aser Adnan Y, Al-Haboub MA. The Effects of Patients' and Care-Givers' Knowledge, Attitude, & Practice (KAP) on Quality of Life Among Thalassemia Major Patients' in the Damascus-Syrian Arab Republic. Eur Sci J .2018; 14 (12):308.
11. Lee YL, Lin DT, Tsai SF. Disease knowledge and treatment adherence among patients with thalassemia major and their mothers in Taiwan. J Clin Nurs. 2009 Feb;18(4):529-38.
12. Carpenter JP, He T, Kirk P, et al. On T2* magnetic resonance and cardiac iron. Circulation. 2011; 123(14):1519-28.
13. Garbowski MW, Carpenter JP, Smith G, et al. Biopsy-based calibration of T2* magnetic resonance for estimation of liver iron concentration and comparison with R2 Ferriscan. J Cardiovasc Magn Reson. 2014;16(1):40.
14. De Sanctis V, Soliman AT, Elsedfy H, et al. Growth and endocrine disorders in thalassemia: The international network on endocrine complications in thalassemia (I-CET) position statement and guidelines. Indian J Endocrinol Metab. 2013;17(1):8-18.
15. Trachtenberg F, Vichinsky E, Haines D, et al. Iron chelation adherence to deferoxamine and deferasirox in thalassemia. Am J Hematol. 2011;86(5):433-6.
16. Rashid M, Karimi M. Compliance of deferoxamine injection in beta-thalassemia major patients in Iran. Transfus Med. 2012;22(2):104-7.
17. Goulas V, Kourakli-Symeonidis A, Camoutsis C. Comparative effects of three iron chelation therapies on the quality of life of Greek patients with homozygous transfusion-dependent Beta-thalassemia. ISRN Hematol. 2012;2012:139862.
18. Delea TE, Edelsberg J, Sofrygin O, et al. Consequences and costs of noncompliance with ICT in patients with transfusion‐dependent thalassemia: a literature review. Transfusion. 2007;47(10):1919-29.
19. Haghpanah S, Zarei T, Zahedi Z, et al. Compliance, and satisfaction with deferasirox (Exjade®) compared with deferoxamine in patients with transfusion-dependent beta-thalassemia. Hematology. 2014;19(4):187-91.
20. Porter J, Bowden DK, Economou M, et al. Health-related quality of life, treatment satisfaction, adherence, and persistence in β-thalassemia and myelodysplastic syndrome patients with iron overload receiving deferasirox: results from the EPIC clinical trial. Anemia. 2012;2012:297641.
21. Lee WS, Toh TH, Chai PF, et al. Self‐reported level of and factors influencing the compliance to desferrioxamine therapy in multi transfused thalassaemias. J Paediatr Child Health. 2011; 47(8):535-40.
22. Al‐Kloub MI, Nayel Salameh T, Froelicher ES. Impact of psychosocial status and disease knowledge on deferoxamine adherence among thalassemia major adolescents. Int J Nurs Pract. 2014; 20(3):265-74.
23. Vosper J, Evangeli M, Porter JB, et al. Psychological Factors Associated with Episodic Chelation Adherence in Thalassemia. Hemoglobin. 2018; 42(1):30-36.
24. Trachtenberg FL, Gerstenberger E, Xu Y, et al. Relationship among chelator adherence, change in chelators, and quality of life in thalassemia. Qual Life Res. 2014; 23(8):2277-88.
25. Rofail D, Abetz L, Viala M, et al. Satisfaction and adherence in patients with iron overload receiving ICT as assessed by a newly developed patient instrument. Value Health. 2009; 12(1):109-17.
26. Gabutti V, Piga A. Results of long-term iron-chelating therapy. Acta Haematol. 1996;95(1):26-36.
27. Soliman A, Yassin M, Al Yafei F, et al. Longitudinal study on liver functions in patients with thalassemia major before and after deferasirox (DFX) therapy. Mediterr J Hematol Infect Dis. 2014; 6(1):e2014025.
IssueVol 15, No 1 (2021) QRcode
SectionOriginal Article(s)
DOI https://doi.org/10.18502/ijhoscr.v15i1.5247
Adherence; Iron chelation therapy; Iron overload; Transfusion dependent thalassemia; Deferiprone; Deferasirox; Desferrioxamine

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How to Cite
Sidhu S, Kakkar S, Dewan P, Bansal N, Sobti P. Adherence to Iron Chelation Therapy and Its Determinants. Int J Hematol Oncol Stem Cell Res. 2021;15(1):27-34.