Factors affecting health-related quality of life in Thai children with thalassemia

BMC Blood Disorders

Volumn 10, Issue , 2010, Pages

  Thavorncharoensap, Montarat ^a,e   Torcharus, Kitti ^b   Nuchprayoon, Issarang ^c   Riewpaiboon, Arthorn ^a   Indaratna, Kaemthong ^c   Ubol, Bang On ^d  

^a MAHIDOL UNIVERSITY   (Thailand)

^b PHRAMONGKUTKLAO HOSPITAL   (Thailand)

^c CHULALONGKORN UNIVERSITY   (Thailand)

^d Saraburi Hospital   (Thailand)

^e MINISTRY OF PUBLIC HEALTH   (Thailand)

Author keywords

[No Author keywords available]

Indexed keywords

FERRITIN; HEMOGLOBIN; IRON CHELATING AGENT;

ACADEMIC ACHIEVEMENT; ADOLESCENT; ADULT; ARTICLE; BETA THALASSEMIA; BLOOD TRANSFUSION; CHILD; CONTROLLED STUDY; DISEASE SEVERITY; DOCTOR PATIENT RELATION; FAMILY RELATION; FEMALE; FERRITIN BLOOD LEVEL; HEALTH PROGRAM; HEALTH STATUS; HEALTH SURVEY; HEMOGLOBIN BLOOD LEVEL; HUMAN; IRON CHELATION; MAJOR CLINICAL STUDY; MALE; MEDICAL RECORD REVIEW; ONSET AGE; PEDSQL 4.0 GENERIC CORE SCALE; PSYCHOSOCIAL CARE; QUALITY OF LIFE; SCORING SYSTEM; SOCIAL PSYCHOLOGY; THAILAND; THALASSEMIA;

EID: 77649331047     PISSN: None     EISSN: 14712326     Source Type: Journal    
DOI: 10.1186/1471-2326-10-1     Document Type: Article

References (42)

1. Weatherall DJ. The thalassaemias: the role of molecular genetics in an evolving global health problem. Am J Hum Genet 2004, 74:385-392. 10.1086/381402, 1182250, 15053011.
2. Angastiniotis M, Modell B. Global epidemiology of hemoglobin disorders. Ann N Y Acad Sci 1998, 850:251-269. 10.1111/j.1749-6632.1998.tb10482.x, 9668547.
3. Wong HB. Prevention of thalassaemias in South-East Asia. Ann Acad Med Singapore 1985, 14:654-665.
4. Diagnosis of Thalassemia Carriers. , http://www.thalassemia.or.th/thaiversion/diag-carrier-th.htm
5. De Sanctis V, Roos M, Gasser T, Fortini M, Raiola G, Galati MC. Impact of long-term iron chelation therapy on growth and endocrine functions in thalassaemia. J Pediatr Endocrinol Metab 2006, 19:471-480.
6. Mikelli A, Tsiantis J. Brief report: Depressive symptoms and quality of life in adolescents with b-thalassaemia. J Adolesc 2004, 27:213-216. 10.1016/j.adolescence.2003.11.011, 15023520.
7. Telfer P, Constantinidou G, Andreou P, Christou S, Modell B, Angastiniotis M. Quality of life in thalassemia. Ann N Y Acad Sci 2005, 1054:273-282. 10.1196/annals.1345.035, 16339675.
8. Caro JJ, Ward A, Green TC, Huybrechts K, Arana A, Wait S, Eleftheriou A. Impact of thalassemia major on patients and their families. Acta Haematol 2002, 107:150-157. 10.1159/000057633, 11978936.
9. Cohen A. Management of iron overload in pediatric patients. Hematol Oncol Clin North Am 1987, 1:521-544.
10. Cao A. Quality of life and survival of patients with beta-thalassemia major. Haematologica 2004, 89:1157-1159.
11. 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, 4:39. 10.1186/1477-7525-4-39, 1538578, 16813662.
12. Pakbaz Z, Treadwell M, Yamashita R, Quirolo K, Foote D, Quill L, Singer T, Vichinsky EP. Quality of life in patients with thalassemia intermedia compared to thalassemia major. Ann N Y Acad Sci 2005, 1054:457-461. 10.1196/annals.1345.059, 16339697.
13. Shaligram D, Girimaji SC, Chaturvedi SK. Psychological problems and quality of life in children with thalassemia. Indian J Pediatr 2007, 74:727-730. 10.1007/s12098-007-0127-6, 17785893.
14. Abetz L, Baladi J, Jones P, Rofail D. The impact of iron overload and its treatment on quality of life: results from a literature review. Health and Quality of Life Outcomes 2006, 4:73. 10.1186/1477-7525-4-73, 1592476, 17007645.
15. Borgna-Pignatti C, Rugolotto S, De Stefano P, Zhao H, Cappellini MD, Del Vecchio GC, Romeo MA, Forni GL, Gamberini MR, Ghilardi F, Piga A, Cnaan A. Survival and complications in patients with thalassemia major treated with transfusion and deferoxamine. Haematologica 2004, 89:1187-1193.
16. Olivieri NF, Nathan DG, MacMillan JH, Wayne AS, Liu PP, McGee A. Survival in medically treated patients with homozygous beta-thalassemia. New Eng J Med 1994, 331:574-578. 10.1056/NEJM199409013310903, 8047081.
17. Porter J, Davis BA. Monitoring chelation treatment to achieve optimal outcome in the treatment of thalassemia. Best Pract Res Clin Haematol 2000, 15:329-368.
18. Zurlo MG, De Stefano P, Borgna-Pignatti C, Di Palma A, Piga A, Melevendi C, Di Gregorio F, Burattini MG, Terzoli S. Survival and causes of death in thalassaemia major. Lancet 1989, 2:27-30. 10.1016/S0140-6736(89)90264-X, 2567801.
19. Forrest CB, Simpson L, Clancy C. Child health services research: challenges and opportunities. JAMA 1997, 277:1787-1793. 10.1001/jama.277.22.1787, 9178792.
20. Homer CJ, Kleinman LC, Goldman DA. Improving the quality of care for children in health systems. Health Serv Res 1998, 33:1091-1109. 1070305, 9776950.
21. McGlynn EA, Halfon N, Leibowitz A. Assessing the quality of care for children: prospects under health reform. Arch Pediatr Adolesc Med 1995, 149:359-368.
22. Seid M, Varni JW, Segall D, Kurtin PS. Health-related quality of life as a predictor of pediatric healthcare costs: a two-year prospective cohort analysis. Health and Quality of Life Outcomes 2004, 2:48. 10.1186/1477-7525-2-48, 521194, 15361252.
23. Lemeshow S, Hosmer DW, Klar J, Lwanga SK. Adequacy of sample size in health studies 1990, Chichester: John Wiley and Sons.
24. Varni JW, Seid M, Knight TS, Uzark K, Szer IS. The PedsQL 4.0 generic core scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med 2002, 25:175-193. 10.1023/A:1014836921812, 11977437.
25. Varni JW, Seid M, Kurtin PS. The PedsQL: Measurement model for the Pediatric Quality of Life Inventory. Med Care 1999, 37:126-139. 10.1097/00005650-199902000-00003, 10024117.
26. Varni JW, Seid M, Kurtin PS. PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001, 39:800-812. 10.1097/00005650-200108000-00006, 11468499.
27. Pongwilairat K, Louthrenoo O, Charnsil C, Witoonchart C. Quality of life of children with attention-deficit/hyperactivity disorder. J Med Assoc Thailand 2005, 88:1062-1066.
28. Telfer PT, Prestcott E, Holden S. Hepatic iron concentration combined with long-term monitoring of serum ferritin to predict complications of iron overload in thalassemia major. Br J Haematol 2000, 110:971-977. 10.1046/j.1365-2141.2000.02298.x, 11054091.
29. Dubey AP, Parakh A, Dublish S. Current trends in the management of beta-thalassemia. Indian J Pediatr 2008, 75:739-743. 10.1007/s12098-008-0140-4, 18716746.
30. Sripichai O, Makarasara W, Munkongdee T, Kumkhaek C, Nuchprayoon I, Chuansumrit A, Chuncharunee S, Chantrakoon N, Boonmongkol P, Winichagoon P, Fucharoen S. A scoring system for the classification of beta-thalassemia/Hb E disease severity. Am J Hematol 2008, 83:482-484. 10.1002/ajh.21130, 18186524.
31. Anionwu E, Atkin K. The politics of sickle cell and thalassaemia 2001, Buckingham: Open University Press.
32. Musallam K, Cappellini MD, Taher A. Challenges associated with prolonged survival of patients with thalassemia: transitioning from childhood to adulthood. Pediatrics 2008, 121:e1426-1429. 10.1542/peds.2007-1944, 18450884.
33. Saeed N. My life. United Kingdom Thalassaemia Society Matters 2004, 99:10.
34. Afsar B, Ozdemir NF, Sezer S, Haberal M. Quality of life is not related with liver disease severity but with anemia, malnutrition and depression in HCV-infected hemodialysis patients. Hemodial Int 2009, 13:62-71. 10.1111/j.1542-4758.2009.00329.x, 19210280.
35. Finkelstein FO, Story K, Firanek C, Mendelssohn D, Barre P, Takano T, Soroka S, Mujais S. Health-related quality of life and hemoglobin levels in chronic kidney disease patients. Clin J Am Soc Nephrol 2008, 4:33-38. 10.2215/CJN.00630208, 2615698, 18987300.
36. Santos PR, Kerr LRFS. Clinical and laboratory variables associated with quality of life in Brazilian haemodialysis patients: a single-centre study. Rev Med Chile 2008, 136:1264-1271.
37. Thein M, Ershler WB, Artz AS, Tecson J, Robinson BE, Rothstein G, Liede A, Gylys-Colwell I, Lu ZJ, Robbins S. Diminished quality of life and physical function in community-dwelling elderly with anemia. Medicare (Baltimore) 2009, 88:107-114.
38. Cianciulli P. Treatment of iron overload in thalassemia. Pediatr Endocrinol Rev 2008, 6(Suppl 1):208-213.
39. Marinov BI, Terziyski KV, Sapunarova KG, SS K. Exercise performance in children with severe beta-thalassemia before and after transfusion. Folia Med (Plovdiv) 2008, 50(4):48-54.
40. Wanapirak C, Tongsong T, Sirivatanapa P, Sa-nguansermsri T, Sekararithi R, A T. Prenatal strategies for reducing severe thalassemia in pregnancy. Int J Gynaecol Obstet 1998, 60(3):239-244. 10.1016/S0020-7292(97)00271-3, 9544707.
41. Phadke SR, S A. Phenotype score to grade the severity of thalassemia intermedia. Indian J Pediatr 2003, 70(6):477-481. 10.1007/BF02723137, 12921315.
42. Osborne RH, De Abreu Lourenço R, Dalton A, Houltram J, Dowton D, Joshua DE, Lindeman R, Ho PJ. Quality of life related to oral versus subcutaneous iron chelation: a time trade-off study. Value in Health 2007, 10:451-456. 10.1111/j.1524-4733.2007.00200.x, 17970927.