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Health-related quality of life and symptom reporting: similarities and differences between children and their parents

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Abstract

Health-related quality of life (HRQOL) is increasingly seen as important to reflect the impact of an illness and its treatment on a patient from the patient’s perspective. However, there may be times when it is difficult to obtain this information directly from pediatric patients, and parents are therefore used as substitutes. Nevertheless, an informant discrepancy between children and their parents increase the need to identify variables which contribute to the observed differences between children’s self-reports and parents’ proxy-reports. Discrepancies between child and parent reports have often been regarded as “methodological error” and have led to misconceived arguments about who is “right.” The aims of this review are to provide an overview and update to help understand the relation between children’s self-report of their symptoms and HRQOL and parents’ proxy-reports, the circumstances in which informant discrepancies might be expected, and potential reasons for these discrepancies. Discrepancies can be summarized in relation to characteristics of the child, the adult and the HRQOL domain being measured. We conclude that informant discrepancy is not simply an irritating measurement error, but also has its clinical implications. We argue that parents and children base their judgments of pediatric HRQOL on different information and as such, comprehensive evaluation needs to take account of both perspectives. This perspective has implications for the design of clinical trials and necessitates routine collection of data from both sources in clinical research and practice.

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Abbreviations

FDA:

Food and Drug Administration

HRQOL:

Health-related quality of life

PROs:

Patient-reported outcomes

References

  1. Achenbach TM (2011) Commentary: definitely more than measurement error: but how should we understand and deal with informant discrepancies? J Clin Child Adolesc Psychol 40:80–86

    Article  PubMed  Google Scholar 

  2. Alonso EM, Limbers CA, Neighbors K, Martz K, Bucuvalas JC, Webb T, Varni JW (2010) Cross-sectional analysis of health-related quality of life in pediatric liver transplant recipients. J Pediatr 156:270–276

    Article  PubMed  Google Scholar 

  3. Davis E, Davies B, Waters E, Priest N (2008) The relationship between proxy reported health-related quality of life and parental distress: gender differences. Child Care Health Dev 34:830–837

    PubMed  CAS  Google Scholar 

  4. De Los Reyes A (2011) Introduction to the special section: more than measurement error: discovering meaning behind informant discrepancies in clinical assessments of children and adolescents. J Clin Child Adolesc Psychol 40:1–9

    Article  PubMed  Google Scholar 

  5. De Los Reyes A, Kazdin AE (2005) Informant discrepancies in the assessment of childhood psychopathology: a critical review, theoretical framework, and recommendations for further study. Psychol Bull 131:483–509

    Article  PubMed  Google Scholar 

  6. De Los Reyes A, Youngstrom EA, Pabón SC, Youngstrom JK, Feeny NC, Findling RL (2011) Internal consistency and associated characteristics of informant discrepancies in clinic referred youths age 11 to 17 years. J Clin Child Adolesc Psychol 40:36–53

    Article  PubMed  Google Scholar 

  7. FDA (2009) Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: Food and Drug Administration. U.S. Department of Health and Human Services, Rockville

    Google Scholar 

  8. FDA (2012) Gastroenterology Regulatory Endpoints and the Advancement of Therapeutics (GREAT workshop). Center for Drug Evaluation and Research. Food and Drug Administration, College Park

    Google Scholar 

  9. Ingerski LM, Modi AC, Hood KK, Pai AL, Zeller M, Piazza-Waggoner C, Driscoll KA, Rothenberg ME, Franciosi J, Hommel KA (2010) Health-related quality of life across pediatric chronic conditions. J Pediatr 156:639–644

    Article  PubMed  Google Scholar 

  10. Janicke DM, Marciel KK, Ingerski LM, Novoa W, Lowry KW, Sallinen BJ, Silverstein JH (2007) Impact of psychosocial factors on quality of life in overweight youth. Obesity 15:1799–1807

    Article  PubMed  Google Scholar 

  11. Kaplan RM (2001) Quality of life in children: a health care policy perspective. In: Koot HM, Wallander JL (eds) Quality of life in child and adolescent illness: concepts, methods, and findings. East Sussex, Brunner-Routledge, pp 89–120

    Google Scholar 

  12. Kobayashi K, Kamibeppu K (2011) Quality of life reporting by parent–child dyads in Japan as grouped by depressive status. Nurs Health Sci 13:170–177

    Article  PubMed  Google Scholar 

  13. Metcalfe A, Coad J, Plumridge GM, Gill P, Farndon P (2008) Family communication between children and their parents about inherited genetic conditions: a meta-synthesis of the research. Eur J Hum Genet 16:1193–1200

    Article  PubMed  Google Scholar 

  14. Norman GR, Sloan JA, Wyrwich KW (2003) Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Med Care 41:582–592

    PubMed  Google Scholar 

  15. Palermo TM, Long AC, Lewandowski AS, Drotar D, Quittner AL, Walker LS (2008) Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. J Pediatr Psychol 33:983–996

    Article  PubMed  Google Scholar 

  16. Palmer SN, Meeske KA, Katz ER, Burwinkle TM, Varni JW (2007) The PedsQL™ brain tumor module: initial reliability and validity. Pediatr Blood Cancer 49:287–293

    Article  PubMed  Google Scholar 

  17. Panepinto JA, Torres S, Varni JW (2012) Development of the PedsQL™ sickle cell disease module items: qualitative methods. Qual Life Res 21:341–357

    Article  PubMed  Google Scholar 

  18. Parsons SK, Fairclough DL, Wang J, Hinds PS (2012) Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: the value of both raters’ perspectives. Qual Life Res 21:915–923

    Article  PubMed  Google Scholar 

  19. Ringold S, Wallace CA, Rivara FP (2009) Health-related quality of life, physical function, fatigue, and disease activity in children with established polyarticular juvenile idiopathic arthritis. J Rheumatol 36:1330–1336

    Article  PubMed  Google Scholar 

  20. Upton P, Lawford J, Eiser C (2008) Parent–child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res 17:895–913

    Article  PubMed  Google Scholar 

  21. Uzark K, King E, Cripe L, Spicer R, Sage J, Kinnett K, Wong B, Pratt J, Varni JW (2012) Health-related quality of life in children and adolescents with Duchenne muscular dystrophy. Pediatrics 130:e1559–e1566

    Article  PubMed  Google Scholar 

  22. van Gent R, van Essen LEM, Rovers MM, Kimpen JLL, van der Ent CK, de Meer G (2007) Quality of life in children with undiagnosed and diagnosed asthma. Eur J Pediatr 166:843–848

    Article  PubMed  Google Scholar 

  23. Varni JW, Burwinkle TM, Berrin SJ, Sherman SA, Artavia K, Malcarne VL, Chambers HG (2006) The PedsQL™ in pediatric cerebral palsy: reliability, validity, and sensitivity of the generic core scales and cerebral palsy module. Dev Med Child Neurol 48:442–449

    Article  PubMed  Google Scholar 

  24. 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 94:2090–2106

    Article  PubMed  Google Scholar 

  25. Varni JW, Kay MT, Limbers CA, Franciosi JP, Pohl JF (2012) PedsQL™ gastrointestinal symptoms module item development: qualitative methods. J Pediatr Gastroenterol Nutr 54:664–671

    Article  PubMed  Google Scholar 

  26. Varni JW, Limbers CA (2009) The Pediatric Quality of Life Inventory™: measuring pediatric health-related quality of life from the perspective of children and their parents. Pediatr Clin N Am 56:843–863

    Article  Google Scholar 

  27. Varni JW, Limbers CA, Burwinkle TM (2007) How young can children reliably and validly self-report their health-related quality of life?: an analysis of 8,591 children across age subgroups with the PedsQL™ 4.0 generic core scales. Health Qual Life Outcomes 5(1):1–13

    Article  PubMed  Google Scholar 

  28. 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(43):1–15

    Article  PubMed  Google Scholar 

  29. Varni JW, Limbers CA, Burwinkle TM (2007) 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 5(2):1–10

    Article  PubMed  Google Scholar 

  30. Varni JW, Seid M, Kurtin PS (2001) 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 39:800–812

    Article  PubMed  CAS  Google Scholar 

  31. Vetter TR, Bridgewater CL, McGwin G (2012) An observational study of patient versus parental perceptions of health-related quality of life in children and adolescents with a chronic pain condition: who should the clinician believe? Health Qual Life Outcomes 10(85):1–12

    Google Scholar 

  32. Weglage J, Fiinders B, Wilken B, Schubert D, Schmidt E, Burgard P, Ullrich K (1992) Psychological and social findings in adolescents with phenylketonuria. Eur J Pediatr 151:522–525

    Article  PubMed  CAS  Google Scholar 

  33. Weissberg-Benchell J, Zielinski TE, Rodgers S, Greenley RN, Askenazi D, Goldstein SL, Fredericks EM, McDiarmid S, Williams L, Limbers CA, Tuzinkiewicz K, Lerret S, Alonso EM, Varni JW (2010) Pediatric health-related quality of life: feasibility, reliability and validity of the PedsQL™ transplant module. Am J Transplant 10:1677–1685

    Article  PubMed  CAS  Google Scholar 

  34. World Health Organization (1948) Constitution of the World Health Organization: basic document. World Health Organization, Geneva

    Google Scholar 

Download references

Conflict of interest

No honorarium, grant, or other form of payment was given to anyone to produce the manuscript. Dr. Varni holds the copyright and the trademark for the PedsQL™ and receives financial compensation from the Mapi Research Trust, which is a nonprofit research institute that charges distribution fees to for-profit companies that use the Pediatric Quality of Life Inventory™.

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Correspondence to Christine Eiser.

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Eiser, C., Varni, J.W. Health-related quality of life and symptom reporting: similarities and differences between children and their parents. Eur J Pediatr 172, 1299–1304 (2013). https://doi.org/10.1007/s00431-013-2049-9

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  • DOI: https://doi.org/10.1007/s00431-013-2049-9

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