1 PhD Student in Nursing, Student Research Committee, Faculty of Nursing and Midwifery, Semnan University of Medical Sciences, Semnan, Iran.

2 Faculty of Nursing and Midwifery, Nursing Care Research Center, Semnan University of Medical Sciences, Semnan, Iran.

3 Department of Internal Medicine,Faculty of Medicine ,North Khorasan University of Medical Sciences, Bojnurd, Iran.

4 Department of Pediatrics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran.


Background: Quality of life (QoL) is a complicated phenomenon in patients with thalassemia major. This study was conducted to clarify the concept of QoL in patients with thalassemia major.
Materials and Methods: This study was performed using Roger’s evolutionary method. Electronic databases: Cochrane Library, Web of Science, Scopus, Science Direct, ProQuest, and Medline. The inclusion criteria were papers published in English up to March 2017 with no time limit for publication. The keywords searched in titles, abstracts, and keywords of the studies included quality of life, health-relatedquality of life, thalassemia, thalassemia major, beta thalassemia, and beta thalassemia major.
Results: 67 studies were included. QoL in most studies had been evaluated using the SF-36 and PedsQL. The terms QoL, HRQoL, and QL were used interchangeably in most of the studies. In this concept analysis, HRQoL and well-being were recognized as surrogate terms for the QoL in patients with thalassemia major. The concepts related to the QoL in patients with thalassemia major included satisfaction, indicator of health care, individual’s own view of health, and health status assessment. Five antecedents identified in this concept analysis were: professional figure mainly involved, clinical-care interventions, medicinal and therapeutic approaches and response to them, disease characteristics and presence of comorbidities, ability and characteristics of patient. Seven attributes of the QoL in patients with thalassemia major were objective, subjective, multidimensional, measurable, dynamic, predictable, and processable.
Conclusion: Consequences of the concept were effects on physical functioning and improvement of psychological conditions, compliance with regular chelation therapy, iron overload, continuing education, having an appropriate job and marriage, patients’ economic and social status, and finally, motivation and life expectancy.


  1. Abdul-Zahra HAI, Hassan MK, Ahmed BAAH. Health-related Quality of Life in Children and Adolescents with β-Thalassemia Major on Different Iron Chelators in Basra, Iraq. Journal of pediatric hematology/oncology. 2016;38(7):503-11.
  2. Waheed F. Thalassaemia prevention in Maldives: effectiveness of primary, secondary and tertiary prevention interventions: The University of Western Australia; 2015.
  3. Haghpanah S, Nasirabadi S, Ghaffarpasand F, Karami R, Mahmood M, Parand S, et al. Quality of life among iranian patients with beta-thalassemia major using the SF-36 questionnaire. Sao Paulo medical journal. 2013;131(3):166-72.
  4. Telfer P, Constantinidou G, Andreou P, Christou S, Modell B, Angastiniotis M. Quality of life in thalassemia. Annals of the New York Academy of Sciences. 2005;1054(1):273-82.
  5. Baraz S, Miladinia M, Mosavinouri E. A Comparison of Quality of Life between Adolescences with Beta Thalassemia Major and their Healthy Peers. International Journal of Pediatrics. 2016;4(1):1195-204.
  6. Klaassen R, Alibhai S, Kirby Allen M, Moreau K, Merelles-Pulcini M, Forgie M, Blanchette V, Buckstein R, Odame I, Quirt I, Yee K. Introducing the TranQol: a new disease-specific quality of life measure for children and adults with thalassemia major. Journal of Blood Disorders and Transfusion. 2013;4(4):1-5.
  7. Borgna-Pignatti C, Rugolotto S, De Stefano P, Zhao H, Cappellini MD, Del Vecchio GC, et al. Survival and complications in patients with thalassemia major treated with transfusion and deferoxamine. Haematologica. 2004;89(10):1187-93.
  8. Weatherall D, Clegg J. Inherited haemoglobin disorders: an increasing global health problem. Bulletin of the World Health Organization. 2001;79(8):704-12.
  9. Mouser AL. Health‐Related Quality of Life in Patients With Moderate to Severe Chronic Obstructive Pulmonary Disease: A Concept Analysis. International journal of nursing knowledge. 2014;25(2):73-9.
  10. Boudreau J, Dubé A. Quality of life in end stage renal disease: a concept analysis. CANNT journal= Journal ACITN. 2014;24(1):12-20.
  11. Bond AE. Quality of life for critical care patients: a concept analysis. American Journal of Critical Care. 1996;5(4):309-13.
  12. Bowman MJ. Quality of Life in Multiple Sclerosis: Université d'Ottawa/University of Ottawa; 2016.
  13. Cooley ME. Quality of life in persons with non-small cell lung cancer: a concept analysis. Cancer Nursing. 1998;21(3):151-61.
  14. Dignani L, Toccaceli A, Guarinoni MG, Petrucci C, Lancia L, editors. Quality of life in chronic obstructive pulmonary disease: An evolutionary concept analysis. Nursing forum; 2015: Wiley Online Library. DOI: 10.1111/nuf.12110
  15. Fulton JS, Miller WR, Otte JL. A systematic review of analyses of the concept of quality of life in nursing: exploring how form of analysis affects understanding. Advances in Nursing Science. 2012;35(2):E1-E12.
  16. Taylor RM, Gibson F, Franck LS. A concept analysis of health‐related quality of life in young people with chronic illness. Journal of clinical nursing. 2008;17(14):1823-33.
  17. Fawcett J. Thoughts on concept analysis: multiple approaches, one result. Nursing science quarterly. 2012;25(3):285-7.
  18. Tofthagen R, Fagerstrøm LM. Rodgers’ evolutionary concept analysis–a valid method for developing knowledge in nursing science. Scandinavian journal of caring sciences. 2010;24(s1):21-31.
  19. Rodgers BL. Concept analysis, An evolutionary view. In B. L. Rodgers, K A. Knafl (Eds.) Concept development in nursing foundations, techniques and applications. Philadelphia: Saunders; 2000:77-102.
  20. Ansari S, Baghersalimi A, Azarkeivan A, Nojomi M, Hassanzadeh Rad A. Quality of life in patients with thalassemia major. Iranian Journal of Pediatric Hematology & Oncology. 2014;4(2):57-63.
  21. Ferrans CE, Zerwic JJ, Wilbur JE, Larson JL. Conceptual model of health‐related quality of life. Journal of Nursing Scholarship. 2005;37(4):336-42.
  22. Oxford dictionaries. Oxford University Press; 2016. Available at: [accessed 09.26.17].
  23. Adib-Hajbaghery M, Ahmadi M, SP. Health Related Quality of Life, Depression, Anxiety and Stress in Patients with Beta-Thalassemia Major. Iranian Journal of Pediatric Hematology & Oncology. 2015;5(4):193-205.
  24. Amoudi AS, Balkhoyor AH, Abulaban AA, Azab AM, Radi SA, Ayoub MD, et al. Quality of life among adults with beta-thalassemia major in western Saudi Arabia. Saudi medical journal. 2014;35(8):882-5.
  25. Baghianimoghadam MH, Sharifirad G, Rahaei Z, Baghianimoghadam B, Heshmati H. Health related quality of life in children with thalassaemia assessed on the basis of SF-20 questionnaire in Yazd, Iran: A case-control study. Central European Journal of Public Health. 2011;19(3):165-9.
  26. Caocci G, Efficace F, Ciotti F, Roncarolo MG, Vacca A, Piras E, et al. Prospective Assessment of Health-Related Quality of Life in Pediatric Patients with Beta-Thalassemia following Hematopoietic Stem Cell Transplantation. Biology of Blood and Marrow Transplantation. 2011;17(6):861-6.
  27. Caocci G, Efficace F, Ciotti F, Roncarolo MG, Vacca A, Piras E, et al. Health related quality of life in Middle Eastern children with beta-thalassemia. BMC Blood Disorders. 2012; 12: 6.
  28. 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. European Journal of Haematology. 2015;95(5):411-20.
  29. Emadi Dehaghi b, Rasooli L, Mohammadi Farsani S. Quality of life among patients with beta-thalassemia major in Shahrekord city, Iran. International Journal of Epidemiologic Research. 2016;3(4):324-8.
  30. Gharaibeh HF, Gharaibeh MK. Factors influencing health-related quality of life of thalassaemic Jordanian children. Child: Care, Health and Development. 2012;38(2):211-8.
  31. Kuo HT, Tsai MY, Peng CT, Wu KH. Pilot study on the "quality of life" as reflected by psychosocial adjustment of children with thalassemia major undergoing iron-chelatlng treatment in Western Taiwan. Hemoglobin. 2006;30(2):291-9.
  32. Mednick L, Yu S, Trachtenberg F, Xu Y, Kleinert DA, Giardina PJ, et al. Symptoms of depression and anxiety in patients with thalassemia: Prevalence and correlates in the thalassemia longitudinal cohort. American journal of hematology. 2010;85(10):802-5.
  33. Oliveros O, Trachtenberg F, Haines D, Gerstenberger E, Martin M, Carson S, et al. Pain over time and its effects on life in thalassemia. American journal of hematology. 2013;88(11):939-43.
  34. Seyedifar M, Dorkoosh FA, Hamidieh AA, Naderi M, Karami H, Karimi M, et al. Health-Related Quality of Life and Health Utility Values in Beta Thalassemia Major Patients Receiving Different Types of Iron Chelators in Iran. International Journal of Hematology Oncology & Stem Cell Research. 2016;10(4):224-31.
  35. Surapolcha P, Satayasa W, Sinlapamongkolku P, Udomsubpayaku U. Biopsychosocial predictors of health-related quality of life in children with thalassemia in Thammasat University Hospital. Journal of the Medical Association of Thailand. 2010;93(SUPPL 7):S65-S75.
  36. Pinto S, Fumincelli L, Mazzo A, Caldeira S, Martins JC. Comfort, well-being and quality of life: Discussion of the differences and similarities among the concepts. Porto Biomedical Journal. 2017;2(1):6-12.
  37. Gollo G, Savioli G, Balocco M, Venturino C, Boeri E, Costantini M, et al. Changes in the quality of life of people with thalassemia major between 2001 and 2009. Patient preference & adherence. 2013;7:231-6.
  38. Klaassen R, Vichinsky E, Kirby M, Neufeld E, Kwiatkowski J, Wu J, et al. Validation and Reliability of a Disease-Specific Quality of Life Measure (the TranQol) in Adults with Thalassemia Major. (CP). Quality of Life Research. 2012;20:71-.
  39. Trachtenberg FL, Gerstenberger E, Xu Y, Mednick L, Sobota A, Ware H, et al. Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia. Quality of Life Research. 2014;23(8):2277-88.
  40. Tubman VNMDM, Fung EBPRD, Vogiatzi MMD, Thompson AAMDMPH, Rogers ZRMD, Neufeld EJMDP, et al. Guidelines for the Standard Monitoring of Patients With Thalassemia: Report of the Thalassemia Longitudinal Cohort. Journal of pediatric hematology/oncology. 2015;37(3):e162-e9.
  41. Shaligram D, Girimaji SC, Chaturvedi SK. Psychological problems and quality of life in children with thalassemia. Indian Journal of Pediatrics. 2007;74(8):727-30.
  42. Abdul Wahab J, Naznin M, Nora MZ, Suzanah AR, Zulaiha M, Aidil Faszrul AR, et al. Thalassaemia: A study on the perception of patients and family members. Medical Journal of Malaysia. 2011;66(4):326-34.
  43. Lyrakos GN, Vini D, Aslani H, Drosou-Servou M. Psychometric properties of the Specific Thalassemia Quality of Life instrument for adults. Patient Preference and Adherence. 2012;6:477-97.
  44. Mevada ST, Al Saadoon M, Zachariah M, Al Rawas AH, Wali Y. Impact of Burden of Thalassemia Major on Health-related Quality of Life in Omani Children. Journal of pediatric hematology/oncology. 2016;38(5):384-8.
  45. Borhani F, Najafi MK, Rabori ED, Sabzevari S. The effect of family-centered empowerment model on quality of life of school-aged children with thalassemia major. Iranian Journal of Nursing and Midwifery Research. 2011;16(4):292-8.
  46. Saha R, Misra R, Saha I. Health Related Quality of Life and its Predictors among Bengali Thalassemic Children Admitted to a Tertiary Care Hospital. Indian Journal of Pediatrics. 2015;82(10):909-16.
  47. Maheri A, Sedeghi R, Shojaeezadeh D, Tol A, Yaseri M, Ebrahimi M. The association between health-promoting lifestyle and quality of life among adults with beta-thalassemia major. Epidemiology and health. 2016;15:15.
  48. Origa R, Piga A, Quarta G, Forni GL, Longo F, Melpignano A, et al. Pregnancy and beta-thalassemia: an Italian multicenter experience. Haematologica. 2010;95(3):376-81.
  49. Payne KA, Rofail D, Baladi JF, Viala M, Abetz L, Desrosiers MP, et al. Iron chelation therapy: Clinical effectiveness, economic burden and quality of life in patients with iron overload. Advances in Therapy. 2008;25(8):725-42.
  50. Messina G, Colombo E, Cassinerio E, Ferri F, Curti R, Altamura C, et al. Psychosocial aspects and psychiatric disorders in young adult with thalassemia major. Internal and emergency medicine. 2008;3(4):339-43.
  51. Ammad SA, Mubeen SM, Shah SFUH, Mansoor S. Parents' opinion of quality of life (QOL) in Pakistani thalassaemic children. Journal of the Pakistan Medical Association. 2011;61(5):470-3.
  52. Ayoub MD, Radi SA, Azab AM, Abulaban AA, Balkhoyor AH, Bedair SEW, et al. Quality of life among children with beta-thalassemia major treated in Western Saudi Arabia. Saudi medical journal. 2013;34(12):1281-6.
  53. Cao A. Quality of life and survival of patients with beta-thalassemia major. Haematologica. 2004;89(10):1157-9.
  54. Khani H, Majdi MR, Azad Marzabadi E, Montazeri A, Ghorbani A, Ramezani M. Quality of life of iranian β-thalassaemia major patients living on the southern coast of the caspian sea. Eastern Mediterranean Health Journal. 2012;18(5):539-45.
  55. Pakbaz Z, Treadwell M, Yamashita R, Quirolo K, Foote D, Quill L, et al. Quality of life in patients with thalassemia intermedia compared to thalassemia major. Annals of the New York Academy of Sciences. 2005;1054:457-61.
  56. Riaz H, Riaz T, Khan M, Aziz S, Ullah F, Rehman A, et al. Serum ferritin levels, socio-demographic factors and desferrioxamine therapy in multi-transfused thalassemia major patients at a government tertiary care hospital of Karachi, Pakistan. BMC Research Notes. 2011;4(1):287.
  57. Sharma S, Seth B, Jawade P, Ingale M, Setia MS. Quality of Life in Children with Thalassemia and their Caregivers in India. Indian Journal of Pediatrics. 2016;84(3):1-7.
  58. Kaheni S, Yaghobian M, Sharefzadah GH, Vahidi A, Ghorbani H, Abderahemi A. Quality of Life in Children with Β-Thalassemia Major at Center for Special Diseases. Iran J Pediatr Hematol Oncol. 2013;3(3):108-13.
  59. Mahmoud MAM. Health related quality of life in Thalassemia patients treated by iron chelation therapy in the United arab Emirates. MS thesis. 2015.
  60. Thavorncharoensap M, Torcharus K, Nuchprayoon I, Riewpaiboon A, Indaratna K, Ubol BO. Factors affecting health-related quality of life in Thai children with thalassemia. BMC Blood Disorders. 2010;10(1):1.
  61. Clarke SA, Skinner R, Guest J, Darbyshire P, Cooper J, Shah F, et al. Health-related quality of life and financial impact of caring for a child with Thalassaemia Major in the UK. Child: Care, Health and Development. 2010;36(1):118-22.
  62. Jafari H, Lahsaeizadeh S, Jafari P, Karimi M. Quality of life in thalassemia major: reliability and validity of the Persian version of the SF-36 questionnaire. Journal of postgraduate medicine. 2008;54(4):273-5.
  63. Makroo RN, Arora JS, Chowdhry M, Bhatia A, Thakur UK, Minimol A. Red cell alloimmunization and infectious marker status (human immunodeficiency virus, hepatitis B virus and hepatitis C virus) in multiply transfused thalassemia patients of North India. Indian journal of pathology & microbiology. 2013;56(4):378-83.
  64. Musallam KM, Khoury B, Abi-Habib R, Bazzi L, Succar J, Halawi R, et al. Health-related quality of life in adults with transfusion-independent thalassaemia intermedia compared to regularly transfused thalassaemia major: New insights. European Journal of Haematology. 2011;87(1):73-9.
  65. Siddiqui SH, Ishtiaq R, Sajid F, Sajid R. Quality of life in patients with thalassemia major in a developing country. Journal of the College of Physicians and Surgeons--Pakistan : JCPSP. 2014;24(7):477-80.
  66. Trachtenberg F, Vichinsky E, Haines D, Pakbaz Z, Mednick L, Sobota A, et al. Iron chelation adherence to deferoxamine and deferasirox in thalassemia. American journal of hematology. 2011;86(5):433-6.
  67. Dhirar N, Khandekar J, Bachani D, Mahto D. Thalassemia Major: how do we improve quality of life? Springerplus. 2016;5(1):1895.
  68. Farmaki K, Tzoumari I, Pappa C. Oral chelators in transfusion-dependent thalassemia major patients may prevent or reverse iron overload complications. Blood cells, molecules & diseases. 2011;47(1):33-40.
  69. Safizadeh H, Farahmandinia Z, Nejad SS, Pourdamghan N, Araste M. Quality of life in patients with thalassemia major and intermedia in kerman-iran (I.R.). Mediterranean Journal of Hematology & Infectious Diseases. 2012;4(1):e2012058.
  70. Wu HP, Lin CL, Chang YC, Wu KH, Lei RL, Peng CT, et al. Survival and complication rates in patients with thalassemia major in Taiwan. Pediatric Blood and Cancer. 2017;64(1):135-8.
  71. Bentley A, Gillard S, Spino M, Connelly J, Tricta F. Cost-utility analysis of deferiprone for the treatment of beta-thalassaemia patients with chronic iron overload: a UK perspective. Pharmacoeconomics. 2013;31(9):807-22.
  72. 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 Hematology Print. 2012;2012:139862.
  73. Hachim IY, Al Nuaimi YE, Abd El Baky A, Al Hashmi F, Rahman A, Mazroei S, et al. Quality of life in patients suffering from thalassaemia in Ras Al Khaimah, United Arab Emirates.2014;212(1210):1-7.
  74. Weidlich D, Kefalas P, Guest JF. Healthcare costs and outcomes of managing β-thalassemia major over 50 years in the United Kingdom. Transfusion. 2016;56(5):1038-45.
  75. Yengil E, Acipayam C, Kokacya MH, Kurhan F, Oktay G, Ozer C. Anxiety, depression and quality of life in patients with beta thalassemia major and their caregivers. Int J Clin Exp Med. 2014;7(8):2165-72.
  76. Poggi M, Pascucci C, Monti S, Pugliese P, Lauri C, Amodeo G, et al. Prevalence of growth hormone deficiency in adult polytransfused beta-thalassemia patients and correlation with transfusional and chelation parameters. Journal of endocrinological investigation. 2010;33(8):534-8.
  77. Lal A. Assessment and treatment of pain in thalassemia. Annals of the New York Academy of Sciences. 2016;1368(1):65-72.
  78. Rafii Z, Ahmadi F, Nourbakhsh SMK, Hajizadeh E. The Effects of an Orientation Program on Quality of Life of Patients with Thalassemia: a Quasi-Experimental Study. Journal of Caring Sciences. 2016;5(3):223-9.
  79. Waheed F, Fisher C, Awofeso A, Stanley D. Carrier screening for beta-thalassemia in the Maldives: perceptions of parents of affected children who did not take part in screening and its consequences. Journal of Community Genetics. 2016;7(3):243-53.
  80. Costanza R, Fisher B, Ali S, Beer C, Bond L, Boumans R, et al. An integrative approach to quality of life measurement, research, and policy. SAPI EN S Surveys and Perspectives Integrating Environment and Society. 2008; 26(1.1).
  81. Torcharus K, Pankaew T. Health-related quality of life in Thai Thalassemic children treated with iron chelation. Southeast Asian Journal of Tropical Medicine and Public Health. 2011;42(4):951-9.
  82. Ismail A, Campbell MJ, Ibrahim HM, Jones GL. Health related quality of life in Malaysian children with thalassaemia. Health and quality of life outcomes. 2006; 4(1):39.
  83. Ismail M, Chun CY, Shahar S, Manaf ZA, Rajikan R, Mohd Yusoff NA, et al. Quality of life among thalassaemia children, adolescent and their caregivers. Sains Malaysiana. 2013;42(3):373-80.
  84. McClimans L, Browne JP. Quality of life is a process not an outcome. Theoretical Medicine and Bioethics. 2012;33(4):279-92.