Supportive Care in Cancer

, Volume 19, Issue 9, pp 1275–1287

Identifying determinants of quality of life of children with cancer and childhood cancer survivors: a systematic review

  • Anne F. Klassen
  • Samantha J. Anthony
  • Aalia Khan
  • Lillian Sung
  • Robert Klaassen
Review Article

Abstract

Purpose

This paper describes a systematic review conducted to identify factors that have been investigated as explanations of variability in the quality of life of children with cancer and childhood cancer survivors. Our purpose was to build an evidence base that could be used to guide and direct future research.

Methods

MEDLINE, CINAHL, EMBASE, PsycINFO, Cancerlit, and Sociological Abstracts were searched from the inception of each database to June 15, 2009 using the following search terms: “quality of life,” “health-related quality of life,” “quality adjusted life years,” “health status,” “functional status,” “well-being,” or “patient-reported outcome.” Sample characteristics and information about the relationship between a quality of life domain or total scale score and at least one factor (e.g., child gender or age, coping skills, family income) were extracted from eligible studies.

Results

Nine cancer-specific and nine generic QOL questionnaires were used in 58 publications described 239 factors (50 unique factors). The large number of cancer, treatment, child, and family variables considered indicates that extensive research activity has occurred. However, most of the variables identified were examined in only a few studies and most represent medical and treatment variables with less research attention paid to child and family variables.

Conclusions

Our study has compiled evidence about determinants of QOL for children with cancer and childhood cancer survivors from the existing literature. Future research can build on this evidence base to expand the range of factors studied as most research to date has focused on medical and treatment factors.

Keywords

Cancer Children Systematic review Quality of life Conceptual model Survivor Neoplasm 

References

  1. 1.
    Ries LAG, Melbert D, Krapcho M, Stinchcomb DG, Howlader N, Horner MJ, Mariotto A, Miller BA, Feuer EJ, Altekruse SF, Lewis DR, Clegg L, Eisner MP, Reichman M, Edwards BK (2007) SEER Cancer Statistics Review, 1975–2004. National Cancer Institute, BethesdaGoogle Scholar
  2. 2.
    Keene N, Hobbie W, Ruccione KS (2000) Childhood cancer survivors: a practical guide to your future. O'Reilly & Associates, SebastopolGoogle Scholar
  3. 3.
    Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19 June–22 July 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948Google Scholar
  4. 4.
    Klassen AF, Strohm SJ, Maurice-Stam H, Grootenhuis M (2010) Quality of life questionnaires for children and childhood cancer survivors: a comparison of available measures. Support Care Cancer 18:1207–1217PubMedCrossRefGoogle Scholar
  5. 5.
    Klassen AF, Khan AF, Anthony S, Klaassen R, Sung L (2010) Conceptualizing quality of life in children with cancer and childhood cancer survivors. 2010 International Society for Quality of Life Research meeting abstracts. The QLR Journal, Abstract #98/1653:76.Google Scholar
  6. 6.
    Rajmil L, Herdman M, Fernandez De Sanmamed M, Detmar S, Bruil J, Ravens-Sieberer U, Bullinger M, Simeoni M, Auquier P, Kidscreen Group (2004) Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content. J Adolesc Health 34:37–45PubMedCrossRefGoogle Scholar
  7. 7.
    The Public Health Agency of Canada. http://www.phac-aspc.gc.ca/ph-sp/determinants/index-eng.php. Accessed 22 May 2011
  8. 8.
    Lach LM, Ronen GM, Rosenbaum PL, Cunningham C, Boyle MH, Bowman S, Streiner DL (2006) Health-related quality of life in youth with epilepsy: theoretical model for clinicians and researchers. Part 1: the role of epilepsy and co-morbidity. Qual Life Res 15:1161–1171PubMedCrossRefGoogle Scholar
  9. 9.
    McDougall J, Tsonis M (2009) Quality of life in survivors of childhood cancer: a systematic review of the literature (2001–2008). Support Care Cancer 17:1231–1246PubMedCrossRefGoogle Scholar
  10. 10.
    Liberati A, Altman DG, Tetzlaff J, Mulrow C, Gotzsche PC, Ioannidis JPA, Clarke M, Devereau PJ, Kleijnen J, Moher D (2009) The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Med 6(7):e1000100PubMedCrossRefGoogle Scholar
  11. 11.
    Aarsen FK, Paquier PF, Reddingius RE, Streng IC, Arts WF, Evera-Preesman M, Catsman-Berrevoets CE (2006) Functional outcome after low-grade astrocytoma treatment in childhood. Cancer 106:396–402PubMedCrossRefGoogle Scholar
  12. 12.
    Armstrong FD, Toledano SR, Miloslavich K, Lackman-Zeman L, Levy JD, Gay CL, Schuman WB, Fishkin PE (1999) The Miami pediatric quality of life questionnaire: parent scale. Int J Cancer Suppl 12:11–17PubMedCrossRefGoogle Scholar
  13. 13.
    Barr RD, Chalmers D, Pauw SD, Furlong W, Weitzman S, Feeny D (2000) Health-related quality of life in survivors of Wilms' tumor and advanced neuroblastoma: a cross-sectional study. J Clin Oncol 18:3280–3287PubMedGoogle Scholar
  14. 14.
    Benesch M, Spiegl K, Winter A, Passini A, Lackner H, Moser A, Sovinz P, Schwinger W, Urban C (2009) A scoring system to quantify late effects in children after treatment for medulloblastoma/ependymoma and its correlation with quality of life and neurocognitive functioning. Childs Nerv Syst 25:173–181PubMedCrossRefGoogle Scholar
  15. 15.
    Bhat SR, Goodwin TL, Burwinkle TM, Landsdale MF, Dahl GV, Huhn SL, Gibbs IC, Donaldson SS, Rosenblum RK, Varni JW, Fisher PG (2005) Profile of daily life in children with brain tumors: an assessment of health-related quality of life. J Clin Oncol 23:5493–5500PubMedCrossRefGoogle Scholar
  16. 16.
    Bhatia S, Jenney MEM, Wu E, Bogue MK, Rockwood TH, Feusner JH, Friedman DL, Robison LL, Kane RL (2002) The Minneapolis–Manchester Quality of Life instrument: reliability and validity of the youth form. J Pediatr 145:39–46Google Scholar
  17. 17.
    Bijttebier P, Vercruysse T, Vertommen H, Van Gool S, Uyttebroeck A, Brock P (2001) New evidence on the reliability and validity of the Pediatric Oncology Quality of Life Scale. Psychol Health 16:461–469CrossRefGoogle Scholar
  18. 18.
    Cardarelli C, Cereda C, Maiero L, Viscardi E, Faggin R, Laverda A, Bisogno G, Perilongo G (2006) 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 46:637–644PubMedCrossRefGoogle Scholar
  19. 19.
    Carpentier MY, Mullins LL, Elkin TD, Wolfe-Christensen C (2008) Predictors of health-harming and health-protective behaviors in adolescents with cancer. Pediatr Blood Cancer 51:525–530PubMedCrossRefGoogle Scholar
  20. 20.
    De Bolle M, De Clercq B, De Fruyt F, Benoit Y (2008) Self- and parental perspectives on quality of life in children with cancer. J Psychosoc Oncol 26:35–47PubMedCrossRefGoogle Scholar
  21. 21.
    De Clercq B, De Fruyt F, Koot HM, Benoit Y (2004) Quality of life in children surviving cancer: a personality and multi-informant perspective. J Pediatr Psychol 29:579–590PubMedCrossRefGoogle Scholar
  22. 22.
    Eiser C, Eiser JR (2007) Mothers' ratings of quality of life in childhood cancer: initial optimism predicts improvement over time. Psychol Health 22:535–543CrossRefGoogle Scholar
  23. 23.
    Eiser C, Eiser JR, Greco V (2004) Surviving childhood cancer: quality of life and parental regulatory focus. Pers Soc Psychol Bull 30:123–133PubMedCrossRefGoogle Scholar
  24. 24.
    Eiser C, Eiser JR, Stride CB (2005) Quality of life in children newly diagnosed with cancer and their mothers. Health Qual Life Outcomes 3:29PubMedCrossRefGoogle Scholar
  25. 25.
    Eiser C, Vance YH, Horne B, Glaser A, Galvin H (2003) The value of the PedsQLTM in assessing quality of life in survivors of childhood cancer. Child Care Health Dev 29:95–102PubMedCrossRefGoogle Scholar
  26. 26.
    Eiser C, Vance YH, Glaser A, Galvin H, Horne B, Picton S, Stoner A, Butler G (2005) Growth hormone treatment and quality of life among survivors of childhood cancer. Horm Res 63:300–304PubMedCrossRefGoogle Scholar
  27. 27.
    Fluchel M, Horsman JR, Furlong W, Castillo L, Alfonz Y, Barr RD (2008) Self and proxy-reported health status and health-related quality of life in survivors of childhood cancer in Uruguay. Pediatr Blood Cancer 50:838–843PubMedCrossRefGoogle Scholar
  28. 28.
    Fu L, Talmsa D, Baez F, Bonilla M, Moreno B, Ah-Chu M, Pena A, Furlong W, Barr RD (2006) Measurement of health-related quality of life in survivors of cancer in childhood in Central America: feasibility, reliability, and validity. J Pediatr Hematol Oncol 28:331–341PubMedCrossRefGoogle Scholar
  29. 29.
    Goodwin DAJ, Boggs SR, Graham-Pole J (1994) Development and validation of the pediatric oncology quality of life scale. Psychol Assess 6:321–328CrossRefGoogle Scholar
  30. 30.
    Grant J, Cranston A, Horsman J, Furlong W, Barr N, Findlay S, Barr R (2006) Health status and health-related quality of life in adolescent survivors of cancer in childhood. J Adolesc Health 38:504–510PubMedCrossRefGoogle Scholar
  31. 31.
    Gurney JG, Tersak JM, Ness KK, Landier W, Matthay KK, Schmidt ML, Children's Oncology Group (2007) Hearing loss, quality of life, and academic problems in long-term neuroblastoma survivors: a report from the Children's Oncology Group. Pediatrics 120:e1229–e1239PubMedCrossRefGoogle Scholar
  32. 32.
    Landolt MA, Vollrath M, Miggli FK, Gnehm HE, Sennhauser FH (2006) Health-related quality of life in children with newly diagnosed cancer: a one year follow-up study. Health Qual Life Outcomes 4:63PubMedCrossRefGoogle Scholar
  33. 33.
    Le Gales C, Costet N, Gentet J, Kalifa C, Frappaz D, Edan C, Sariban E, Plantaz D, Doz F (1999) Cross-cultural adaptation of a health status classification system in children with cancer. First results of the French adaptation of the Health Utilities Index Marks 2 and 3. Int J Cancer Suppl 12:112–118PubMedGoogle Scholar
  34. 34.
    Magal-Vardi O, Laor N, Toren A, Strauss L, Wolmer L, Bielorai B, Rechavi G, Toren P (2004) Psychiatric morbidity and quality of life in children with malignancies and their parents. J Nerv Ment Dis 192:872–875PubMedCrossRefGoogle Scholar
  35. 35.
    Marchese VG, Chiarello LA (2004) Relationships between specific measures of body function, activity, and participation in children with acute lymphoblastic leukemia. Rehab Oncol 22:5–9Google Scholar
  36. 36.
    Maurice-Stam H, Grootenhuis MA, Brons PPT, Caron HN, Last BF (2007) Psychosocial indicators of health-related quality of life in children with cancer 2 months after end of successful treatment. J Pediatr Hematol Oncol 29:540–550PubMedCrossRefGoogle Scholar
  37. 37.
    Maurice-Stam H, Oort FJ, Last BF, Brons PP, Caron HN, Grootenhuis MA (2008) Longitudinal assessment of health-related quality of life in preschool children with non-CNS cancer after the end of successful treatment. Pediatr Blood Cancer 50:1047–1051PubMedCrossRefGoogle Scholar
  38. 38.
    Meeske K, Katz ER, Palmer SN, Burwinkle T, Varni JW (2004) Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer 101:2116–2125PubMedCrossRefGoogle Scholar
  39. 39.
    Meeske KA, Patel SK, Palmer SN, Nelson MB, Parow AM (2007) Factors associated with health-related quality of life in pediatric cancer survivors. Pediatr Blood Cancer 49:298–305PubMedCrossRefGoogle Scholar
  40. 40.
    Mounir GM, Abolfotouh MA (2007) Assessment of health related quality of life among school children with cancer in Alexandria. J Egypt Public Health Assoc 82:219–238PubMedGoogle Scholar
  41. 41.
    Odame I, Duckworth J, Talsma D, Beaumont L, Furlong W, Webber C, Barr R (2006) Osteopenia, physical activity and health-related quality of life in survivors of brain tumors treated in childhood. Pediatr Blood Cancer 46:357–362PubMedCrossRefGoogle Scholar
  42. 42.
    Roddenberry A, Renk K (2008) Quality of life in pediatric cancer patients: the relationships among parents' characteristics, children's characteristics, and informant concordance. J Child Fam Stud 17:402–426CrossRefGoogle Scholar
  43. 43.
    Russell KMW, Hudson M, Long A, Phipps S (2006) Assessment of health-related quality of life in children with cancer: consistency and agreement between parent and child reports. Cancer 106:2267–2274PubMedCrossRefGoogle Scholar
  44. 44.
    Sandeberg MAF, Johansson E, Bjork O, Wettergren L (2008) Health-related quality of life relates to school attendance in children on treatment for cancer. J Pediatr Oncol Nurs 25:265–274CrossRefGoogle Scholar
  45. 45.
    Sands SA, Kellie SJ, Davidow AL, Diez B, Villablanca J, Weiner HL, Pietanza MC, Balmaceda C, Finlay JL (2001) Long-term quality of life and neuropsychologic functioning for patients with CNS germ-cell tumors: from the First International CNS Germ-Cell Tumor Study. Neuro Oncol 3:174–183PubMedGoogle Scholar
  46. 46.
    Sands SA, Milner JS, Goldberg J, Mukhi V, Moliterno JA, Maxfield C, Wisoff JH (2005) Quality of life and behavioral follow-up study of pediatric survivors of craniopharyngioma. J Neurosurg 103:302–11PubMedGoogle Scholar
  47. 47.
    Sawyer M, Antoniou G, Toogood I, Rice M (1999) A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer. Int J Cancer Suppl 12:39–45PubMedCrossRefGoogle Scholar
  48. 48.
    Scarpelli AC, Paiva SM, Pordeus IA, Ramos-Jorge ML, Varni JW, Allison PJ (2008) Measurement properties of the Brazilian version of the Pediatric Quality of Life Inventory (PedsQL) cancer module scale. Health Qual Life Outcomes 6:7PubMedCrossRefGoogle Scholar
  49. 49.
    Seid M, Varni JW, Rode CA, Katz ER (1999) The Pediatric Cancer Quality of Life Inventory: a modular approach to measuring health-related quality of life in children with cancer. Int J Cancer Suppl 12:71–76PubMedCrossRefGoogle Scholar
  50. 50.
    Shankar S, Robison L, Jenney MEM, Rockwood TH, Wu E, Feusner J, Friedman D, Kane RL, Bhatia S (2005) Health-related quality of life in young survivors of childhood cancer using the Minneapolis–Manchester Quality of Life-Youth Form. Pediatrics 115:435–442PubMedCrossRefGoogle Scholar
  51. 51.
    Sitaresmi MN, Mostert S, Gundy CM, Sutaryo VAJ (2008) Health-related quality of life assessment in Indonesian childhood acute lymphoblastic leukemia. Health Qual Life Outcomes 6:96PubMedCrossRefGoogle Scholar
  52. 52.
    Sung L, Klaassen RJ, Dix D, Pritchard S, Yanofsky R, Dzolganovski B, Almeida R, Klassen A (2008) Identification of paediatric cancer patients with poor quality of life. Br J Cancer 100:82–88PubMedCrossRefGoogle Scholar
  53. 53.
    Tabone MD, Rodary C, Oberlin O, Gentet JC, Pacquement H, Kalifa C (2005) Quality of life of patients treated during childhood for a bone tumor: assessment by the Child Health Questionnaire. Pediatr Blood Cancer 45:207–211PubMedCrossRefGoogle Scholar
  54. 54.
    Trudel JG, Rivard M, Dobkin PL, Leclerc JM, Robaey P (1998) Psychometric properties of the Health Utilities Index Mark 2 system in paediatric oncology patients. Qual Life Res 7:421–432PubMedCrossRefGoogle Scholar
  55. 55.
    Van Dijk J, Huisman J, Moll AC, Schouten-van Meeteren AY, Bezemer PD, Ringens PJ, Cohen-Kettenis PT, Imhof SM (2007) Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands. Health Qual Life Outcomes 5:65PubMedCrossRefGoogle Scholar
  56. 56.
    Vance YH, Morse RC, Jenney ME, Eiser C (2001) Issues in measuring quality of life in childhood cancer: measures, proxies, and parental mental health. J Child Psychol Psychiatry 42:661–667PubMedCrossRefGoogle Scholar
  57. 57.
    Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P (2002) 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 94:2090–2106PubMedCrossRefGoogle Scholar
  58. 58.
    Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A (1998) The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer 82:1184–1196PubMedCrossRefGoogle Scholar
  59. 59.
    Varni JW, Limbers CA, Burwinkle TM (2007) Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 5:43PubMedCrossRefGoogle Scholar
  60. 60.
    Varni JW, Seid M, Rode CA (1999) The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 37:126–139PubMedCrossRefGoogle Scholar
  61. 61.
    Ward-Smith P, Hamlin J, Bartholomew J, Stegenga K (2007) Quality of life among adolescents with cancer. J Pediatr Oncol Nurs 24:166–171PubMedCrossRefGoogle Scholar
  62. 62.
    Watson M, Edwards L, Von Essen L, Davidson J, Day R, Pinkerton R (1999) Development of the Royal Marsden Hospital Paediatric Oncology Quality of Life Questionnaire. Int J Cancer Suppl 12:65–70PubMedCrossRefGoogle Scholar
  63. 63.
    Wright MJ, Galea V, Barr RD (2005) Proficiency of balance in children and youth who have had acute lymphoblastic leukemia. J Child Fam Stud 17:402–426Google Scholar
  64. 64.
    Wu E, Robison L, Jenney MEM, Rockwood TH, Feusner J, Friedman D, Kane RL, Bhatia S (2007) Assessment of health-related quality of life of adolescent cancer patients using the Minneapolis–Manchester Quality of Life Adolescent Questionnaire. Pediatr Blood Cancer 48:678–86PubMedCrossRefGoogle Scholar
  65. 65.
    Yaris N, Yavuz MN, Yavuz AA, Okten A (2001) Assessment of quality of life in pediatric cancer patients at diagnosis and during therapy. Turk J Canc 31:139–149Google Scholar
  66. 66.
    Yeh C, Hung L (2003) Construct validity of newly developed quality of life assessment instrument for child and adolescent cancer patients in Taiwan. Psychooncology 12:345–356PubMedCrossRefGoogle Scholar
  67. 67.
    Yeh CH, Hung LC, Chao KU (2004) The quality of life for cancer children (QOLCC) for Taiwanese children with cancer (part II): feasibility, cross-informants variance and clinical validity. Psychooncology 13:171–176PubMedCrossRefGoogle Scholar
  68. 68.
    Zebrack BJ, Chesler MA (2002) Quality of life in childhood cancer survivors. Psychooncology 11:132–141PubMedCrossRefGoogle Scholar
  69. 69.
    van Dijk J, Imhof SM, Moll AC, Ringens PJ, Cohen-Kettenis PT, Rijmen F, Huisman J (2007) Quality of life of adult retinoblastoma survivors in the Netherlands. Health Qual Life Outcomes 5:30PubMedCrossRefGoogle Scholar
  70. 70.
    Speechley KN, Barrera M, Shaw AK, Morrison HI, Maunsell E (2006) Health-related quality of life among child and adolescent survivors of childhood cancer. J Clin Oncol 24:2536–2543PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag 2011

Authors and Affiliations

  • Anne F. Klassen
    • 1
  • Samantha J. Anthony
    • 1
  • Aalia Khan
    • 1
  • Lillian Sung
    • 2
  • Robert Klaassen
    • 3
  1. 1.Department of PediatricsMcMaster UniversityHamiltonCanada
  2. 2.Division of Haematology/OncologyThe Hospital for Sick ChildrenTorontoCanada
  3. 3.Department of PediatricsChildren’s Hospital of Eastern OntarioOttawaCanada

Personalised recommendations