Health-related quality of life assessment in Indonesian childhood acute lymphoblastic leukemia

Mei N Sitaresmi, Saskia Mostert, Chad M Gundy, Sutaryo, Anjo J P Veerman, Mei N Sitaresmi, Saskia Mostert, Chad M Gundy, Sutaryo, Anjo J P Veerman

Abstract

Background: Most studies on Health-related Quality of Life (HRQOL) in children with cancer were conducted in developed countries. The aims of this study were to assess the HRQOL in childhood acute lymphoblastic leukemia (ALL) patients in Indonesia and to assess the influence of demographic and medical characteristics on HRQOL.

Methods: After cultural linguistic validation, a cross-sectional study of HRQOL was conducted with childhood ALL patients and their guardians in various phases of treatment using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scale and the Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Module.

Results: Ninety-eight guardians and 55 patients participated. The internal consistency of both scales ranged from 0.57 to 0.92. HRQOL of Indonesian patients was comparable with those in developed countries. There were moderate to good correlations between self-reports and proxy-reports, however guardians tended to report worse HRQOL than patients. Children of the 2-5 year-group significantly had more problems in procedural anxiety, treatment anxiety and communication subscales than in older groups (p < 0.05). In the non-intensive phase HRQOL was significantly better than in the intensive phase, both in patient self-reports and proxy-reports.

Conclusion: Younger children had more problems in procedural anxiety, treatment anxiety and communication subscales. Therefore, special care during intervention procedures is needed to promote their normal development. Psychosocial support should be provided to children and their parents to facilitate their coping with disease and its treatment.

References

    1. Pui CH, Campana D, Evans WE. Childhood acute lymphoblastic leukaemia – current status and future perspectives. Lancet Oncol. 2001;2:597–607. doi: 10.1016/S1470-2045(01)00516-2.
    1. Pui CH, Jeha S. New therapeutic strategies for the treatment of acute lymphoblastic leukaemia. Nat Rev Drug Discov. 2007;6:149–65. doi: 10.1038/nrd2240.
    1. Ribeiro RC, Pui CH. Saving the children – improving childhood cancer treatment in developing countries. N Engl J Med. 2005;352:2158–60. doi: 10.1056/NEJMp048313.
    1. Rajajee S, Desikulu MV, Pushpa V. Survival of childhood acute lymphoblastic leukemia: experience in Chennai. J Trop Pediatr. 1999;45:367–70. doi: 10.1093/tropej/45.6.367.
    1. Metzger ML, Howard SC, Fu LC, Pena A, Stefan R, Hancock ML, et al. Outcome of childhood acute lymphoblastic leukaemia in resource-poor countries. Lancet. 2003;362:706–8. doi: 10.1016/S0140-6736(03)14228-6.
    1. Magrath I. Pediatric Oncology in Countries with Limited Resources. In: Pizzo PA, Poplack DG, editor. Principles and practice of pediatric oncology. Philadelphia: Lippincott-Raven Publishers; 1997. pp. 1395–419.
    1. Eiser C. Beyond survival: quality of life and follow-up after childhood cancer. J Pediatr Psychol. 2007;32:1140–50. doi: 10.1093/jpepsy/jsm052.
    1. Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005;3:34. doi: 10.1186/1477-7525-3-34.
    1. Langeveld NE, Stam H, Grootenhuis MA, Last BF. Quality of life in young adult survivors of childhood cancer. Support Care Cancer. 2002;10:579–600. doi: 10.1007/s00520-002-0388-6.
    1. Yeh CH, Chang CW, Chang PC. Evaluating quality of life in children with cancer using children's self-reports and parent-proxy reports. Nurs Res. 2005;54:354–62. doi: 10.1097/00006199-200509000-00010.
    1. Varni JW, Limbers C, Burwinkle TM. Literature review: health-related quality of life measurement in pediatric oncology: hearing the voices of the children. J Pediatr Psychol. 2007;32:1151–63. doi: 10.1093/jpepsy/jsm008.
    1. 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;39:800–12. doi: 10.1097/00005650-200108000-00006.
    1. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer. 2002;94:2090–106. doi: 10.1002/cncr.10428.
    1. Upton P, Eiser C, Cheung I, Hutchings HA, Jenney M, Maddocks A, et al. Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes. 2005;3:22. doi: 10.1186/1477-7525-3-22.
    1. Scarpelli AC, Paiva SM, Pordeus IA, Ramos-Jorge ML, Varni JW, Allison PJ. Measurement properties of the Brazilian version of the Pediatric Quality of Life Inventory (PedsQL) cancer module scale. Health Qual Life Outcomes. 2008;6:7. doi: 10.1186/1477-7525-6-7.
    1. Reinfjell T, Lofstad GE, Veenstra M, Vikan A, Diseth TH. Health-related quality of life and intellectual functioning in children in remission from acute lymphoblastic leukaemia. Acta Paediatr. 2007;96:1280–5. doi: 10.1111/j.1651-2227.2007.00383.x.
    1. Gkoltsiou K, Dimitrakaki C, Tzavara C, Papaevangelou V, Varni JW, Tountas Y. Measuring health-related quality of life in Greek children: psychometric properties of the Greek version of the Pediatric Quality of Life Inventory(TM) 4.0 Generic Core Scales. Qual Life Res. 2008;17:299–305. doi: 10.1007/s11136-007-9294-1.
    1. van Brussel M, Takken T, Lucia A, van der Net J, Helders PJ. Is physical fitness decreased in survivors of childhood leukemia? A systematic review. Leukemia. 2005;19:13–7.
    1. Meeske K, Katz ER, Palmer SN, Burwinkle T, Varni JW. Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer. 2004;101:2116–25. doi: 10.1002/cncr.20609.
    1. Landolt MA, Vollrath M, Niggli FK, Gnehm HE, Sennhauser FH. Health-related quality of life in children with newly diagnosed cancer: a one year follow-up study. Health Qual Life Outcomes. 2006;4:63. doi: 10.1186/1477-7525-4-63.
    1. Fluchel M, Horsman JR, Furlong W, Castillo L, Alfonz Y, Barr RD. Self and proxy-reported health status and health-related quality of life in survivors of childhood cancer in Uruguay. Pediatr Blood Cancer. 2008;50:838–43. doi: 10.1002/pbc.21299.
    1. Sutaryo , Sumadiono , Suhadi , et al. Indonesian Multicentre Study Group, Yogyakarta. Gadjah Mada University Press; 2000. The Protocol of Wijaya Kusuma acute lymphoblastic leukemia of childhood 2000.
    1. Waters E, Maher E. Assessing quality of life. In: Moyer V, Ellist E, editor. Evidence-based pediatric and child health. BMJ Publishing group; 2000. pp. 99–100.
    1. Mostert S, Sitaresmi MN, Gundy CM, Sutaryo , Veerman AJ. Influence of socioeconomic status on childhood acute lymphoblastic leukemia treatment in Indonesia. Pediatrics. 2006;118:e1600–e1606. doi: 10.1542/peds.2005-3015.
    1. Eiser C, Davies H, Jenney M, Stride C, Glaser A. HRQOL implications of treatment with dexamethasone for children with acute lymphoblastic leukemia (ALL) Pediatr Blood Cancer. 2006;46:35–9. doi: 10.1002/pbc.20432.
    1. Varni JW, Limbers CA, Burwinkle TM. Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:2. doi: 10.1186/1477-7525-5-2.
    1. Felder-Puig R, Frey E, Proksch K, Varni JW, Gadner H, Topf R. Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy. Qual Life Res. 2004;13:223–34. doi: 10.1023/B:QURE.0000015305.44181.e3.
    1. Eiser C, Vance YH, Horne B, Glaser A, Galvin H. The value of the PedsQLTM in assessing quality of life in survivors of childhood cancer. Child Care Health Dev. 2003;29:95–102. doi: 10.1046/j.1365-2214.2003.00318.x.

Source: PubMed

スポンサーと協力者

医学的状態

薬物療法

3
購読する