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


CONCLUSIONS
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.
Sitaresmi
Mei N
MN
Department of Pediatrics, Faculty of Medicine, Gadjah Mada University, Yogyakarta, Indonesia. msitaresmi@yahoo.com
Mostert
Saskia
S
Gundy
Chad M
CM
Sutaryo
Veerman
Anjo J P
AJ
D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D007214:Indonesia; D007872:Legal Guardians; D008297:Male; D010290:Parents; D054198:Precursor Cell Lymphoblastic Leukemia-Lymphoma / Q000523:psychology; D011594:Psychometrics / Q000379:methods*; D011788:Quality of Life; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires