Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire
Keywords:
Beta-thalassemia, Chronic disease, Health status, Mental health, Quality of lifeAbstract
CONTEXT AND OBJECTIVE: Patients with beta-thalassemia major (β-TM) experience physical, psychological and social problems that lead to decreased quality of life (QoL). The aim here was to measure health-related QoL and its determinants among patients with β-TM, using the Short Form-36 (SF-36) questionnaire. DESIGN AND SETTING: Cross-sectional study at the Hematology Research Center of Shiraz University of Medical Sciences, in southern Iran. METHODS: One hundred and one patients with β-TM were randomly selected. After the participants’ demographics and disease characteristics had been recorded, they were asked to fill out the SF-36 questionnaire. The correlations of clinical and demographic factors with the QoL score were evaluated. RESULTS: There were 44 men and 57 women of mean age 19.52 ± 4.3 years (range 12-38). On two scales, pain (P = 0.041) and emotional role (P = 0.009), the women showed significantly lower scores than the men. Lower income, poor compliance with iron-chelating therapy and presence of comorbidities were significantly correlated with lower SF-36 scores. These factors were also found to be determinants of worse SF-36 scores in multivariate analysis. CONCLUSIONS: We showed that the presence of disease complications, poor compliance with ironchelating therapy and poor economic status were predictors of worse QoL among patients with β-TM. Prevention and proper management of disease-related complications, increased knowledge among patients regarding the importance of managing comorbidities and greater compliance with iron-chelating therapy, along with psychosocial and financial support, could help these patients to cope better with this chronic disease state.
Downloads
References
Ismail A, Campbell MJ, Ibrahim HM, Jones GL. Health Related Quality of Life in Malaysian children with thalassaemia. Health Qual Life Outcomes. 2006;4:39.
Angastiniotis M, Modell B. Global epidemiology of hemoglobin disorders. Ann N Y Acad Sci. 1998;850:251-69.
Weatherall D. 2003 William Allan Award address. The Thalassemias: the role of molecular genetics in an evolving global health problem. Am J Hum Genet. 2004;74(3):385-92.
Brittenham GM, Griffith PM, Nienhuis AW, et al. Efficacy of deferoxamine in preventing complications of iron overload in patients with thalassemia major. N Engl J Med. 1994;331(9):567-73.
Telfer P, Coen PG, Christou S, et al. Survival of medically treated thalassemia patients in Cyprus. Trends and risk factors over the period 1980-2004. Haematologica. 2006;91(9):1187-92.
Olivieri NF, Brittenham GM. Iron-chelating therapy and the treatment of thalassemia. Blood. 1997;89(3):739-61.
Pakbaz Z, Treadwell M, Yamashita R, et al. Quality of life in patients with thalassemia intermedia compared to thalassemia major. Ann N Y Acad Sci. 2005;1054:457-61.
Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473-83.
Roy T, Chatterjee SC. The experiences of adolescents with thalassemia in West Bengal, India. Qual Health Res. 2007;17(1):85-93.
Manocchia M, Bayliss MS, Connor J, et al. SF36 health survey annotated bibliography. 2nd ed. Boston: Health Assessment Lab; 1998.
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. J Postgrad Med. 2008;54(4):273-5.
Diaz-Buxo JA, Lowrie EG, Lew NL, Zhang H, Lazarus JM. Quality-of- life evaluation using Short Form 36: comparison in hemodialysis and peritoneal dialysis patients. Am J Kidney Dis. 2000;35(2):293-300.
McHorney CA, Ware JE Jr, Raczek AE. The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care. 1993;31(3):247-63.
Ware JE Jr, Gandek B. Overview of the SF-36 Health Survey and the International Quality of Life Assessment (IQOLA) Project. J Clin Epidemiol. 1998;51(11):903-12.
Montazeri A, Goshtasebi A, Vahdaninia M, Gandek B. The Short Form Health Survey (SF-36): translation and validation study of the Iranian version. Qual Life Res. 2005;14(3):875-82.
Motamed N, Ayatollahi AR, Zare N, Sadeghi-Hassanabadi A. Validity and reliability of the Persian translation of the SF-36 version 2 questionnaire. East Mediterr Health J. 2005;11(3):349-57.
Khani H, Majdi MR, Marzabadi EA, et al. Quality of life of Iranian beta- thalassaemia major patients living on the southern coast of the Caspian Sea. East Mediterr Health J. 2012;18(5):539-45.
Cao A, Galanello R. Beta-Thalassemia. In: Pagon RA, Bird TD, Dolan CR, et al., editors. Gene ReviewsTM. Seattle: University of Washington; 1993-2005. Available from: http://www.ncbi.nlm.nih.gov/books/NBK1426/. Accessed in 2012 (Aug 15).
Mazzone L, Battaglia L, Andreozzi F, Romeo MA, Mazzone D. Emotional impact in beta-thalassaemia major children following cognitive-behavioural family therapy and quality of life of caregiving mothers. Clin Pract Epidemiol Ment Health. 2009;5:5.
Berdoukas V, Farmaki K, Wood JC, Coates T. Iron chelation in thalassemia: time to reconsider our comfort zones. Expert Rev Hematol. 2011;4(1):17-26.
Weatherall D, Akinyanju O, Fucharoen S, Olivieri N, Musgrove P. Inherited disorders of hemoglobin. In: Jamison DT, Breman JG, Measham AR, et al., editors. Disease control priorities in developing countries. 2nd edition. Washington: World Bank; 2006. p. 663-80. Available from: http://www.ncbi.nlm.nih.gov/books/NBK11727/pdf/ch34.pdf. Accessed in 2012 (Aug 15).
Ramzi M, Nourani H, Zakernia M, Hamidian Jahromi AR. Hematopoietic stem cell transplantation for beta-thalassemia major: experience in south of Iran. Transplant Proc. 2004;36(8):2509-10.
Sobota A, Yamashita R, Xu Y, et al. Quality of life in thalassemia: a comparison of SF-36 results from the thalassemia longitudinal cohort to reported literature and the US norms. Am J Hematol. 2011;86(1):92-5.
Tajvar M, Arab M, Montazeri A. Determinants of health-related quality of life in elderly in Tehran, Iran. BMC Public Health. 2008;8:323.
Baker GA, Jacoby A, Gorry J, et al. Quality of life of people with epilepsy in Iran, the Gulf, and Near East. Epilepsia. 2005;46(1):132-40.
Tofighi S, Ahmad Kiadaliri A, Sadeghifar J, Raadabadi M, Mamikhani J. Health-Related Quality of Life among Patients with Coronary Artery Disease: A Post-Treatment Follow-Up Study in Iran. Cardiol Res Pract. 2012;2012:973974.
Alishiri GH, Bayat N, Salimzadeh A, et al. Health-related quality of life and disease activity in rheumatoid arthritis. J Res Med Sci. 2011;16(7):897-903.
Yekta Z, Pourali R, Ghasemi-Rad M. Comparison of demographic and clinical characteristics influencing health-related quality of life in patients with diabetic foot ulcers and those without foot ulcers. Diabetes Metab Syndr Obes. 2011;4:393-9.
Sanjari M, Safari S, Shokoohi M, et al. A cross-sectional study in Kerman, Iran, on the effect of diabetic foot ulcer on health-related quality of life. Int J Low Extrem Wounds. 2011;10(4):200-6.
Aydinok Y, Erermis S, Bukusoglu N, Yilmaz D, Solak U. Psychosocial implications of Thalassemia Major. Pediatr Int. 2005;47(1):84-9.
Goldbeck L, Baving A, Kohne E. Psychosoziale Aspekte der beta-Thalassämie: Krankheitserleben, Coping und Therapiemitarbeit [Psychosocial aspects of beta-thalassemia: distress, coping and adherence]. Klin Padiatr. 2000;212(5):254-9.
Khurana A, Katyal S, Marwaha RK. Psychosocial burden in thalassemia. Indian J Pediatr. 2006;73(10):877-80.