Health related quality of life in the first year after diagnosis in children with brain tumours compared with matched healthy controls; a prospective longitudinal study

European Journal of Cancer

Volumn 44, Issue 9, 2008, Pages 1243-1252

  Penn, Anthony ^a,b,c   Lowis, Stephen P ^b   Hunt, Linda P ^d   Shortman, Robert I ^a   Stevens, Michael C G ^b,d   McCarter, Renee L ^a   Curran, Andrew L ^a   Sharples, Peta M ^a  

^a FRENCHAY HOSPITAL   (United Kingdom)

^b BRISTOL ROYAL HOSPITAL FOR CHILDREN   (United Kingdom)

^c UNIVERSITY OF THE WITWATERSRAND   (South Africa)

^d UNIVERSITY OF BRISTOL   (United Kingdom)

Author keywords

Brain tumours; Central nervous system tumours; Childhood; Health related quality of life; HRQL; Longitudinal; Paediatric; PedsQL; Prospective; Quality of life

Indexed keywords

ADOLESCENT; ARTICLE; BEHAVIOR; BRAIN TUMOR; CENTRAL NERVOUS SYSTEM TUMOR; CLINICAL ARTICLE; CONTROLLED STUDY; CORRELATION ANALYSIS; DEPRESSION; FEMALE; HEALTH STATUS; HUMAN; LONGITUDINAL STUDY; MALE; OUTCOME ASSESSMENT; PARENT; PRESCHOOL CHILD; PRIORITY JOURNAL; PROSPECTIVE STUDY; QUALITY OF LIFE; SCHOOL CHILD; SELF REPORT; STATISTICAL ANALYSIS;

ADOLESCENT; BRAIN NEOPLASMS; CHILD; CHILD, PRESCHOOL; DISCLOSURE; EPIDEMIOLOGIC METHODS; FEMALE; HEALTH STATUS; HUMANS; INFANT; MALE; PARENTS; QUALITY OF LIFE; SELF DISCLOSURE; TIME FACTORS;

EID: 44349164073     PISSN: 09598049     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.ejca.2007.09.015     Document Type: Article

References (49)

1. Steliarova-Foucher E., Stiller C., Kaatsch P., et al. Geographical patterns and time trends of cancer incidence and survival among children and adolescents in Europe since the 1970s (the ACCISproject): an epidemiological study. Lancet 364 9451 (2004) 2097-2105
2. Peris-Bonet R., Martinez-Garcia C., Lacour B., et al. Childhood central nervous system tumours-incidence and survival in Europe (1978-1997): report from Automated Childhood Cancer Information System project. Eur J Cancer 42 13 (2006) 2064-2080
3. Haupt R., Fears T.R., Robison L.L., et al. Educational attainment in long-term survivors of childhood acute lymphoblastic leukemia. JAMA 272 18 (1994) 1427-1432
4. Langeveld N.E., Ubbink M.C., Last B.F., et al. Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psychooncology 12 3 (2003) 213-225
5. Mitby P.A., Robison L.L., Whitton J.A., et al. Utilization of special education services and educational attainment among long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer 97 4 (2003) 1115-1126
6. Stam H., Grootenhuis M.A., and Last B.F. The course of life of survivors of childhood cancer. Psychooncology 14 3 (2005) 227-238
7. Robison L.L., Green D.M., Hudson M., et al. Long-term outcomes of adult survivors of childhood cancer. Cancer 104 S11 (2005) 2557-2564
8. Lannering B., Marky I., Lundberg A., et al. Long-term sequelae after pediatric brain tumors: their effect on disability and quality of life. Med Pediatr Oncol 18 4 (1990) 304-310
9. Mostow E.N., Byrne J., Connelly R.R., et al. Quality of life in long-term survivors of CNS tumors of childhood and adolescence. J Clin Oncol 9 4 (1991) 592-599
10. Zebrack B.J., Gurney J.G., Oeffinger K., et al. Psychological outcomes in long-term survivors of childhood brain cancer: a report from the childhood cancer survivor study. J Clin Oncol 22 6 (2004) 999-1006
11. Bradlyn A.S., Ritchey A.K., Harris C.V., et al. Quality of life research in pediatric oncology. Research methods and barriers. Cancer 78 6 (1996) 1333-1339
12. Calaminus G., Weinspach S., Teske C., et al. Quality of life in children and adolescents with cancer. First results of an evaluation of 49 patients with the PEDQOL questionnaire. Klin Padiatr 212 4 (2000) 211-215
13. De Clercq B., De Fruyt F., Koot H.M., et al. Quality of life in children surviving cancer: a personality and multi-informant perspective. J Pediatr Psychol 29 8 (2004) 579-590
14. Langeveld N.E., Stam H., Grootenhuis M.A., et al. Quality of life in young adult survivors of childhood cancer. Support Care Cancer 10 8 (2002) 579-600
15. Pemberger S., Jagsch R., Frey E., et al. Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being. Support Care Cancer 13 1 (2005) 49-56
16. Zebrack B.J., and Chesler M.A. Quality of life in childhood cancer survivors. Psychooncology 11 2 (2002) 132-141
17. Eiser C., Vance Y.H., Horne B., et al. The value of the PedsQLTM in assessing quality of life in survivors of childhood cancer. Child Care Health Dev 29 2 (2003) 95-102
18. Cardarelli C., Cereda C., Masiero L., et al. Evaluation of health status and health-related quality of life in a cohort of Italian children following treatment for a primary brain tumor. Pediatr Blood Cancer (2006)
19. Jenkin D., Danjoux C., and Greenberg M. Subsequent quality of life for children irradiated for a brain tumor before age four years. Med Pediatr Oncol 31 6 (1998) 506-511
20. Odame I., Duckworth J., Talsma D., et al. Osteopenia, physical activity and health-related quality of life in survivors of brain tumors treated in childhood. Pediatr Blood Cancer (2005)
21. Barr R.D., Simpson T., Whitton A., et al. Health-related quality of life in survivors of tumours of the central nervous system in childhood-a preference-based approach to measurement in a cross-sectional study. Eur J Cancer 35 2 (1999) 248-255
22. Landolt M., Vollrath M., Niggli F., et al. Health-related quality of life in children with newly diagnosed cancer: a one year follow-up study. Health and Quality of Life Outcomes 4 1 (2006) 63
23. Bhat S.R., Goodwin T.L., Burwinkle T.M., et al. Profile of daily life in children with brain tumors: an assessment of health-related quality of life. J Clin Oncol 23 24 (2005) 5493-5500
24. Campo J.V., Comer D.M., Jansen-Mcwilliams L., et al. Recurrent pain, emotional distress, and health service use in childhood. J Pediatr 141 1 (2002) 76-83
25. Varni J.W., Limbers C., and Burwinkle T.M. Literature Review: Health-Related Quality of Life Measurement in Pediatric Oncology: Hearing the Voices of the Children. J Pediatr Psychol (2007) 28
26. Eiser C., and Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 10 4 (2001) 347-357
27. Levi R.B., and Drotar D. Health-related quality of life in childhood cancer: discrepancy in parent-child reports. Int J Cancer Suppl 12 (1999) 58-64
28. Russell K.M., Hudson M., Long A., et al. Assessment of health-related quality of life in children with cancer: consistency and agreement between parent and child reports. Cancer 106 10 (2006) 2267-2274
29. Eiser C., Eiser J.R., and Stride C. Quality of life in children newly diagnosed with cancer and their mothers. Health and Quality of Life Outcomes 3 1 (2005) 29
30. Waters E., Doyle J., Wolfe R., et al. Influence of parental gender and self-reported health and illness on parent-reported child health. Pediatrics 106 6 (2000) 1422-1428
31. Yule W., Bolton D., Udwin O., et al. The long-term psychological effects of a disaster experienced in adolescence: I: The incidence and course of PTSD. J Child Psychol Psychiatry 41 4 (2000) 503-511
32. Wallander J.L., Schmitt M., and Koot H.M. Quality of life measurement in children and adolescents: issues, instruments, and applications. J Clin Psychol 57 4 (2001) 571-585
33. Varni J.W., Seid M., and Kurtin P.S. 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 39 8 (2001) 800-812
34. Varni J.W., Burwinkle T.M., Katz E.R., et al. 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 94 7 (2002) 2090-2106
35. Varni J.W., Burwinkle T.M., Seid M., et al. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 3 6 (2003) 329-341
36. Beck AT, Steer RA, Brown GK. BDI-II Manual. San Antonio, Tx, The Psychological Corporation, Harcourt Brace and Company, 1996.
37. Chang P.C., and Yeh C.H. Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psychooncology 14 2 (2005) 125-134
38. Cohen L., and Holiday M. Statistics for Social Scientists (1982), Harper and Row, London
39. Meeske K., Katz E.R., Palmer S.N., et al. Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer 101 9 (2004) 2116-2125
40. Jurbergs N., Russell K.M., Long A., et al. Adaptive style and differences in parent and child report of health-related quality of life in children with cancer. Psychooncology (2007)
41. Canning E.H., Canning R.D., and Boyce W.T. Depressive symptoms and adaptive style in children with cancer. J Am Acad Child Adolesc Psychiatry 31 6 (1992) 1120-1124
42. Parsons S.K., Barlow S.E., Levy S.L., et al. Health-related quality of life in pediatric bone marrow transplant survivors: according to whom?. Int J Cancer Suppl 12 (1999) 46-51
43. Varni J.W., Seid M., and Rode C.A. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 37 2 (1999) 126-139
44. Theunissen N.C., Vogels T.G., Koopman H.M., et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 7 5 (1998) 387-397
45. Cremeens J., Eiser C., and Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life InventoryÖ 4.0 (PedsQLÖ) generic core scales. Health and Quality of Life Outcomes 4 1 (2006) 58
46. Davis E., Nicolas C., Waters E., et al. Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance. Qual Life Res 16 5 (2007) 863-871
47. Eiser C., Eiser J.R., and Stride C.B. Quality of life in children newly diagnosed with cancer and their mothers. Health Qual Life Outcomes 3 1 (2005) 29
48. Goldbeck L., and Melches J. Quality of life in families of children with congenital heart disease. Qual Life Res 14 8 (2005) 1915-1924
49. Phipps S., Steele R.G., Hall K., et al. Repressive adaptation in children with cancer: a replication and extension. Health Psychol 20 6 (2001) 445-451