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Evaluating health-related quality-of-life studies in paediatric populations

Some conceptual, methodological and developmental considerations and recent applications

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Abstract

Although numerous paediatric-based health-related quality-of-life (HR-QOL) instruments are currently in use, there still remain conceptual, methodological and developmental issues to address. This paper provides an up-to-date critical review of the HR-QOL literature in paediatric medicine.

Our analysis indicates that there is no consensus on how HR-QOL and overall QOL should be defined and measured in children. It is recommended that future studies focus on operationalising and distinguishing these constructs from each other and from traditional health-status measures. A clear empirical basis for generating instrument items and for prioritising specific domains must be described. Researchers should consider using the data gathered during their first interviews as a springboard from which to test their ideas of HR-QOL and QOL, reformulate concepts and subsequently retest their notions before developing instruments.

Related to methodological challenges, consistency and agreement are still used interchangeably when comparing child and parent reports of children’s HR-QOL. The Pearson correlation is a measure of co-variation in scores, and not a measure of agreement. We recommend that researchers focus on determining agreement as opposed to consistency. Few, if any, attempts have been made to account for the possibility that a response shift may have occurred in the evaluation of HR-QOL. Most studies have compared HR-QOL scores of children with illness with their healthy peers. As such, there is a dearth of knowledge regarding the normative process of adaptation within the context of illness. It is recommended that researchers focus on gathering data using a relative standard of comparison. We further recommend that researchers interpret HR-QOL data in line with their intended purpose. Regarding developmental consideration, particular attention ought to be paid to developing instruments that consider children’s emerging sense of self, cognitive capacity and emotional awareness. Instruments that include items that are age appropriate are more likely to maximise reliability and validity of reports.

The results of many HR-QOL instruments are applied in pharmacotherapeutic and pharmacoeconomic assessments. However, there has been relative infrequent application of economically valid HR-QOL tools (utility scales) and the use of HR-QOL scales as outcome measures in paediatric drug trials. As such, few cost-utility analyses have been performed to inform paediatric decision making. In addition, many of the concerns in the development of HR-QOL instruments should also be applied to the utility scales such that they reflect adequately children’s preferences for health states.

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References

  1. Henry B, Aussage P, Grosskopf C, et al. Development of the Cystic Fibrosis Questionnaire (CFQ for assessing quality of life in pediatric and adult patients. Qual Life Res 2003; 12: 63–76

    Article  PubMed  Google Scholar 

  2. Le Galès C, Costet N, Gentet JC, et al. 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 1999; 12: 112–8

    PubMed  Google Scholar 

  3. Joralemon D, Fujinaga KM. Studying the quality of life after organ transplantation: research problems and solutions. Soc Sci Med 1996; 44: 1259–69

    Article  Google Scholar 

  4. Varni JW, Seid M, Knight TS, et al. The PedsQLTM 4.0 generic core scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med 2002; 25: 175–93

    Article  PubMed  Google Scholar 

  5. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001; 5: 1–156

    PubMed  CAS  Google Scholar 

  6. Feeny D, Furlong W, Mulhern RK, et al. A framework for assessing health-related quality of life among children with cancer. Int J Cancer Suppl 1999; 12: 2–9

    Article  PubMed  CAS  Google Scholar 

  7. Marra CA, Levine M, McKerrow R, et al. Overview of healthrelated quality-of-life measures for pediatric patients: application in the assessment of pharmacotherapeutic and pharmacoeconomic outcomes. Pharmacotherapy 1996; 16: 879–88

    PubMed  CAS  Google Scholar 

  8. Hunt SM. The problem of quality of life. Qual Life Res 1997; 6: 205–12

    PubMed  CAS  Google Scholar 

  9. Connolly MA, Johnson JA. Measuring quality of life in paediatric patients. Pharmacoeconomics 1999; 16: 605–25

    Article  PubMed  CAS  Google Scholar 

  10. Asmussen L, Olson LM, Grant EN, et al. Use of the child health questionnaire in a sample of moderate and low-income innercity children with asthma. Am J Respir Crit Care Med 2000; 162: 1215–21

    PubMed  CAS  Google Scholar 

  11. Cunningham MJ, Chin EJ, Landgraf JM, et al. The health impact of chronic recurrent rhinosinusitis in children. Arch Otolaryngol Head Neck Surg 2000; 126: 1363–8

    PubMed  CAS  Google Scholar 

  12. Clarke E, Sulaiman S, Tim CF, et al. Pediatric Asthma Quality of Life Questionnaire: validation in children from Singapore. Asian Pac J Allergy Immunol 1999; 17: 155–61

    Google Scholar 

  13. DeVeaugh-Geiss J, Conners CK, Sarkis EH, et al. GW320659 for the treatment of attention-deficit/hyperactivity disorder in children. J Am Acad Child Adolesc Psychiatry 2002; 41: 914–20

    Article  PubMed  Google Scholar 

  14. Goldstein NA, Fatima M, Campbell TF, et al. Child behavior and quality of life before and after tonsillectomy and adenoidectomy. Arch Otolaryngol Head Neck Surg 2002; 128: 770–5

    PubMed  Google Scholar 

  15. Lehmann HW, Kuhner L, Beckenlehner K, et al. Chronic human parvovirus B19 infection in rheumatic disease of childhood and adolescence. J Clin Virol 2002; 25: 135–43

    Article  PubMed  CAS  Google Scholar 

  16. Modi AC, Quittner AL. Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. J Pediatr Psychol 2003; 28: 535–45

    Article  PubMed  Google Scholar 

  17. Murphy KR, Fitzpatrick S, Cruz-Rivera M, et al. Effects of budesonide inhalation suspension compared with cromolyn sodium nebulizer solution on health status and caregiver quality of life in childhood asthma. Pediatrics 2003; 112: E212–9

    Article  PubMed  Google Scholar 

  18. Raat H, Landgraf JM, Bonsel GJ, et al. Reliability and validity of the Child Health Questionnaire-Child Form (CHQ-CF87) in a Dutch adolescent population. Qual Life Res 2002; 11: 575–81

    Article  PubMed  CAS  Google Scholar 

  19. Waters EB, Salmon LA, Wake M, et al. The health and wellbeing of adolescents: a school-based population study of the self-report child health questionnaire. J Adolesc Health 2001; 29: 140–9

    Article  PubMed  CAS  Google Scholar 

  20. Armstrong FD, Toledano SR, Miloslavich K, et al. The Miami Pediatric Quality of Life Questionnaire: Parent Scale. Int J Cancer Suppl 1999; 12: 11–7

    Article  PubMed  CAS  Google Scholar 

  21. Barnard D, Woloski M, Feeny D, et al. Development of diseasespecific health-related quality-of-life instruments for children with immune thrombocytopenic purpura and their parents. J Pediatr Hematol Oncol 2003; 25: 56–62

    Article  PubMed  Google Scholar 

  22. Calaminus G, Weinspach S, Teske C, et al. Quality of life in children and adolescents with cancer. Klin Padiatr 2000; 212: 211–5

    Article  PubMed  CAS  Google Scholar 

  23. de Serres LM, Derkay C, Astley S, et al. Measuring quality of life in children with obstructive sleep disorders. Arch Otolaryngol Head Neck Surg 2000; 126: 1423–9

    PubMed  Google Scholar 

  24. Hartnick CJ. Validation of a pediatric voice quality-of-life instrument: the Pediatric Voice Outcome Survey. Arch Otolaryngol Head Neck Surg 2002; 128: 919–22

    PubMed  Google Scholar 

  25. Ravens-Sieberer U, Bullinger M. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res 1998; 7: 399–407

    Article  PubMed  CAS  Google Scholar 

  26. Ronen GM, Rosenbaum P, Law M, et al. Health-related quality of life in childhood epilepsy: the results of children’s participation in identifying the components. Dev Med Child Neurol 1999; 41: 554–9

    Article  PubMed  CAS  Google Scholar 

  27. Ronen GM, Rosenbaum P, Law M, et al. Health-related quality of life in childhood disorders: a modified focus group technique to involve children. Qual Life Res 2001; 10: 71–9

    Article  PubMed  CAS  Google Scholar 

  28. Roberts G, Hurley C, Lack G. Development of a quality-of-life assessment for the allergic child or teenager with multisystem allergic disease. J Allergy Clin Immunol 2003; 111: 491–7

    Article  PubMed  Google Scholar 

  29. Stewart MG, Friedman EM, Sulek M, et al. Validation of an outcomes instrument for tonsil and adenoid disease. Arch Otolaryngol Head Neck Surg 2001; 127: 29–35

    PubMed  CAS  Google Scholar 

  30. Eiser C. Choices in measuring quality of life in children with cancer: a comment. Psychooncology 1995; 4: 121–31

    Article  Google Scholar 

  31. Spieth LE, Harris CV. Assessment of health-related quality of life in children and adolescents: an integrative review. J Pediatr Psychol 1996; 21: 175–93

    Article  PubMed  CAS  Google Scholar 

  32. Bonomi AE, Patrick DL, Bushnell DM, et al. Validation of the United States’ version of the World Health Organization Quality Of Life (WHOQOL) instrument. J Clin Epidemiol 2000; 53: 1–12

    Article  PubMed  CAS  Google Scholar 

  33. Goldbeck L, Schmitz TG. Comparison of three generic questionnaires measuring quality of life in adolescents and adults with cystic fibrosis: the 36-Item Short Form Health Survey, the quality of life profile for chronic diseases, and the questions on life satisfaction. Qual Life Res 2001; 10: 23–6

    Article  PubMed  CAS  Google Scholar 

  34. Hepner KA, Sechrest L. Confirmatory factor analysis of the Child Health Questionnaire-Parent Form 50 in a predominately minority sample. Qual Life Res 2002; 11: 763–73

    Article  PubMed  Google Scholar 

  35. Meuleners LB, Lee AH, Binns CW, et al. Quality of life for adolescents: assessing measurement properties using structural equation modelling. Qual Life Res 2003; 12: 283–90

    Article  PubMed  Google Scholar 

  36. World Health Organization. Constitution of the World Health Organization basic document. Geneva: WHO, 1948

  37. Munzenberger PJ, Van Wagnen CA, Abdulhamid I, et al. Quality of life as a treatment outcome in patients with cystic fibrosis. Pharmacotherapy 1999; 19: 393–8

    Article  PubMed  CAS  Google Scholar 

  38. Varni JW, Seid M, Knight TS, et al. The PedsQLTM in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life InventoryTM generic core scales and rheumatology module. Arthritis Rheum 2002; 46: 714–25

    Article  PubMed  Google Scholar 

  39. Seid M, Varni JW, Jacobs JR. Pediatric health-related qualityof-life measurement technology: intersections between science, managed care, and clinical care. J Clin Psychol Med Settings 2000; 7: 17–27

    Article  Google Scholar 

  40. Ware JE. Standards for validating health measures: definition and content. J Chronic Dis 1987; 40: 473–80

    Article  PubMed  Google Scholar 

  41. Sherman EMS, Slick DJ, Connolly MB, et al. Validity of three measures of health-related quality of life in children with intractable epilepsy. Epilepsia 2002; 43: 1230–8

    Article  PubMed  Google Scholar 

  42. Seid M, Varni JW, Rode CA, et al. The pediatric cancer quality of life inventory: a modular approach to measuring healthrelated quality of life in children with cancer. Int J Cancer Suppl 1999; 12: 71–6

    Article  PubMed  CAS  Google Scholar 

  43. Crom DB, Chathaway DK, Tolley EA, et al. Health status and health-related quality of life in long-term adult survivors of pediatric solid tumors. Int J Cancer Suppl 1999; 12: 25–31

    Article  PubMed  CAS  Google Scholar 

  44. Sawyer MG, Spurrier N, Whaites L, et al. The relationship between asthma severity, family functioning and the health-related quality of life of children with asthma. Qual Life Res 2001; 9: 1105–15

    Article  Google Scholar 

  45. Eiser C, Cotter I, Oades P, et al. Health-related quality of life measures for children. Int J Cancer Suppl 1999; 12: 87–90

    Article  PubMed  CAS  Google Scholar 

  46. le Coq EM, Boeke AJP, Bezemer PD, et al. Clinimetric properties of a parent report on their offspring’s quality of life. J Clin Epidemiol 2000; 53: 139–46

    Article  PubMed  Google Scholar 

  47. Annett RD, Bender BG, Lapidus J, et al. Predicting children’s quality of life in an asthma clinical trial: what do children’s reports tell us? J Pediatr 2001; 139: 854–61

    Article  PubMed  CAS  Google Scholar 

  48. Sohn H, Rosenfield RM. Evaluation of sleep-disordered breathing in children. Otolaryngol Head Neck Surg 2003; 128: 344–52

    Article  PubMed  Google Scholar 

  49. Van Schaik CS, Barr RD, Depauw S, et al. Assessment of health status and health-related quality of life in survivors of Hodgkin’s disease in childhood. Int J Cancer Suppl 1999; 12: 32–8

    PubMed  Google Scholar 

  50. Varni JW, Rode CA, Seid M, et al. The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32): II. Feasibility and range of measurement. J Behav Med 1999; 22: 397–406

    Article  PubMed  CAS  Google Scholar 

  51. Loonen HJ, Grootenhuis MA, Last BF, et al. Measuring quality of life in children with inflammatory bowel disease: the IMPACT-II (NL). Qual Life Res 2002; 11: 47–56

    Article  PubMed  CAS  Google Scholar 

  52. Otley A, Smith C, Nicholas D, et al. The IMPACT questionnaire: a valid measure of health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2002; 35: 557–63

    Article  PubMed  Google Scholar 

  53. Kay DJ, Rosenfield RM. Quality of life for children with persistent sinonasal symptoms. Otolaryngol Head Neck Surg 2003; 128: 17–26

    Article  PubMed  Google Scholar 

  54. Verrips GHW, Vogels AGC, den Ouden AL, et al. Measuring health-related quality of life in adolescents: agreement between raters and between methods of administration. Child Care Health Dev 2000; 26: 457–69

    Article  PubMed  CAS  Google Scholar 

  55. Watson M, Edwards L, Von Essen L, et al. Development of the Royal Marsden Hospital Paediatric Oncology Quality of Life Questionnaire. Int J Cancer Suppl 1999; 12: 65–70

    Article  PubMed  CAS  Google Scholar 

  56. Parsons SK, Barlow SE, Levy SI, et al. Health-related quality of life in pediatric bone marrow transplant survivors: according to whom? Int J Cancer Suppl 1999; 12: 46–51

    Article  PubMed  CAS  Google Scholar 

  57. Feldman B, Grundland B, McCullough L, et al. Distinction of quality of life, health related quality of life, and health status in children referred for rheumatological care. J Rheumatol 2000; 27: 226–33

    PubMed  CAS  Google Scholar 

  58. Lemanske RF, Nayak A, McAlary M, et al. Omalizumab improves asthma-related quality of life in children with allergic asthma. Pediatrics 2002; 110: e55

    Article  PubMed  Google Scholar 

  59. Haase JE, Heiney SP, Ruccione KS, et al. Research triangulation to derive meaning-based quality-of-life theory: adolescent resilient model and instrument. Int J Cancer Suppl 1999; 12: 125–31

    Article  PubMed  CAS  Google Scholar 

  60. Guyatt GH. Measuring health-related quality of life in childhood cancer: lessons from the workshop (discussion). Int J Cancer Suppl 1999; 12: 143–6

    Article  PubMed  CAS  Google Scholar 

  61. Kessler RC, Mroczek DK. Some methodological issues in the development of quality of life measures for the evaluation of medical interventions. J Eval Clin Pract 1996; 2: 181–91

    Article  PubMed  CAS  Google Scholar 

  62. Guyatt GH, Kirshner B, Jaeschke R. Measuring health status: what are the necessary measurement properties? J Clin Epidemiol 1992; 45: 1341–5

    Article  PubMed  CAS  Google Scholar 

  63. Kirshner B, Guyatt G. A methodological framework for assessing health indices. J Chronic Dis 1985; 38: 27–36

    Article  PubMed  CAS  Google Scholar 

  64. Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med 1993; 118: 622–8

    PubMed  CAS  Google Scholar 

  65. Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. JAMA 1994; 272: 619–26

    Article  PubMed  CAS  Google Scholar 

  66. Bradlyn AS, Ritchey AK, Harris CV, et al. Quality of life research in pediatric oncology: research methods and barriers. Cancer 1996; 78: 1333–9

    Article  PubMed  CAS  Google Scholar 

  67. Trauer T, Mackinnon A. Why are we weighting? The role of importance ratings in quality of life measurement. Qual Life Res 2001; 10: 579–85

    Article  PubMed  CAS  Google Scholar 

  68. Scientific Advisory Committee of the Medical Outcomes Trust. Assessing health status and quality-of-life instruments: attributes and review criteria. Qual Life Res 2002; 11: 193–205

    Google Scholar 

  69. Camfield C, Breau L, Camfield P. Assessing the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/neurologic disability: impact of Childhood Neurologic Disability Scale. Dev Med Child Neurol 2003; 45: 152–9

    Article  PubMed  Google Scholar 

  70. Felder-Puig R, Frey E, Sonnleithner G, et al. German crosscultural adaptation of the Health Utilities Index and its application to a sample of childhood cancer survivors. Fur J Pediatr 2000; 159: 283–8

    CAS  Google Scholar 

  71. Barr RD, Chalmers D, De Pauw S, et al. Health-related quality of life in survivors of Wilms’ tumor and advanced neuroblastoma: a cross-sectional study. J Clin Oncol 2000; 18: 3280–7

    PubMed  CAS  Google Scholar 

  72. Klassen AF, Landgraf JM, Lee SK, et al. Health realted quality of life in 3 and 4 year old children and their parents: preliminary findings about a new questionnaire. Health Qual Life Outcomes 2003; 1 (1): 81

    Article  PubMed  Google Scholar 

  73. Jokovic A, Locker D, Stephens M, et al. Agreement between mothers and children aged 11–14 years in rating child oral health-related quality of life. Community Dent Oral Epidemiol 2003; 31: 335–43

    Article  PubMed  Google Scholar 

  74. Ottenbacher KJ. An examination of reliability in developmental research. J Dev Behav Pediatr 1995; 16: 177–82

    Article  PubMed  CAS  Google Scholar 

  75. Ungar WJ, Santos MT. The Pediatric Quality Appraisal Questionnaire: an instrument for evaluation of the pediatric health economics literature. Value Health 2003; 6: 584–94

    Article  PubMed  Google Scholar 

  76. Vitale MG, Levy DE, Johnson MG, et al. Assessment of quality of life in adolescent patients with orthopaedic problems: are adult measures appropriate? J Pediatr Orthop 2001; 21: 622–8

    PubMed  CAS  Google Scholar 

  77. Terwee CB, Dekker FW, Wiersinga WM, et al. On assessing responsiveness of health-related quality of life instruments: guidelines for instrument evaluation. Qual Life Res 2003; 12: 349–62

    Article  PubMed  CAS  Google Scholar 

  78. Grey M, Boland EA, Davidson M, et al. Coping skills training for youth with diabetes mellitus has long-lasting effects on metabolic control and quality of life. J Pediatr Psychol 2000; 137: 107–13

    CAS  Google Scholar 

  79. Huss K, Winkelstein M, Nanda J, et al. Computer game for inner-city children does not improve asthma outcomes. J Pediatr Health Care 2003; 17: 72–8

    PubMed  Google Scholar 

  80. Chinn DJ, Poyner T, Sibley G. Randomized controlled trial of a single dermatology nurse consultation in primary care on the quality of life of children with atopic eczema. Br J Dematol 2002; 146: 432–9

    Article  CAS  Google Scholar 

  81. Cohen J. Statistical power analysis for the behavioral Sciences. 2nd ed. Hillsdale (NJ): Lawrence Erlbaum Associates, 1988

    Google Scholar 

  82. Sprangers MAG, Schwartz CE. Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med 1999; 48: 1507–15

    Article  PubMed  CAS  Google Scholar 

  83. Schwartz CE, Sprangers MAG. Methodological approaches for assessing response shift in longitudinal health-related qualityof-life research. Soc Sci Med 1999; 48: 1531–48

    Article  PubMed  CAS  Google Scholar 

  84. Gibbons FX. Social comparison as a mediator of response shift. Soc Sci Med 1999; 48: 1517–30

    Article  PubMed  CAS  Google Scholar 

  85. Norman G. Hi! How are you? Response shift, implicit theories and differing epistemologies. Qual Life Res 2003; 12: 239–49

    Article  PubMed  Google Scholar 

  86. Brossart DF, Clay DL, Willson VL. Methodological and statistical considerations for threats to internal validity in pediatric outcome data: response shift in self-report outcomes. J Pediatr Psychol 2002; 27: 97–107

    Article  PubMed  Google Scholar 

  87. Sawyer M, Antoniou G, Toogood I, et al. A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer. Int J Cancer Suppl 1999; 12: 39–45

    Article  PubMed  CAS  Google Scholar 

  88. Challinor JM, Miaskowski CA, Franck LS, et al. Somatization, anxiety and depression as measures of health-related quality of life of children/adolescents with cancer. Int J Cancer Suppl 1999; 12: 52–7

    Article  PubMed  CAS  Google Scholar 

  89. Phipps S, Dunavant M, Jayawardene D, et al. Assessment of health-related quality of life in acute in-patient settings: use of the bases instrument in children undergoing bone marrow transplantation. Int J Cancer Suppl 1999; 12: 18–24

    Article  PubMed  CAS  Google Scholar 

  90. Levi RB, Drotar D. Health-related quality of life in childhood cancer: discrepancy in parent-child reports. Int J Cancer Suppl 1999; 12: 58–64

    Article  PubMed  CAS  Google Scholar 

  91. Koch T. Life quality vs the `quality of life’: assumptions underlying prospective quality of life instruments in health care planning. Soc Sci Med 2000; 51: 419–27

    Article  PubMed  CAS  Google Scholar 

  92. Price MR, Bratton DL, Klinnert MD. Caregiver negative affect is a primary determinant of caregiver report of pediatric asthma quality of life. Ann Allergy Asthma Immunol 2002; 89: 572–7

    Article  PubMed  Google Scholar 

  93. Verrips GHW, Stuifbergen MC, den Ouden AL, et al. Measuring health status using the Health Utilities Index. J Clin Epidemiol 2001; 54: 475–81

    Article  PubMed  CAS  Google Scholar 

  94. Schor EL, Stidley CA, Malspeis S. Behavioral correlates of differences between a child’s assessment and the parents’ assessment of the child’s self-esteem. J Dev Behav Pediatr 1995; 16: 211–9

    Article  PubMed  CAS  Google Scholar 

  95. Feinberg ME, Howe GW, Reiss D, et al. Relationship between perceptual differences of parenting and adolescent antisocial behavior and depressive symptoms. J Fam Psychol 2000; 14: 531–55

    Article  PubMed  CAS  Google Scholar 

  96. Steinberg L. The family at adolescence: transition and transformation. J Adolesc Health 2000; 27: 170–8

    Article  PubMed  CAS  Google Scholar 

  97. Kazdin AE, Moser J, Colbus D, et al. Depressive symptoms among physically abused and psychiatrically disturbed children. J Abnorm Psychol 1985; 94: 298–307

    Article  PubMed  CAS  Google Scholar 

  98. Lewis M. Altering fate: why the past does not predict the future. New York (NY): The Guilford Press, 1997

    Google Scholar 

  99. Feinstein AR, Cicchetti D V. High agreement but low kappa: I. The problems of two paradoxes. J Clin Epidemiol 1990; 43: 543–9

    Article  PubMed  CAS  Google Scholar 

  100. Raat H, Bonsel GJ, Essink-Bot ML, et al. Reliability and validity of comprehensive health status measures in children: The Child Health Questionnaire in relation to the Health Utilities Index. J Clin Epidemiol 2002; 55: 67–76

    Article  PubMed  Google Scholar 

  101. Theunissen NCM, Vogels TGC, Koopman HM, et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 1998; 7: 387–97

    Article  PubMed  CAS  Google Scholar 

  102. Portney G, Watkins MP. Foundations of clinical research: applications to practice. Norwalk (CT): Appleton & Lange, 1993

    Google Scholar 

  103. Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometric 1977; 33: 159–74

    Article  CAS  Google Scholar 

  104. Horowitz FD. Exploring developmental theories: toward a structural/behavioral model of development. Hillsdale (NJ): Erlbaum, 1987

    Google Scholar 

  105. Bee H. The developing child. 5th ed. New York (NY): Harper & Row Publishers, 1989

    Google Scholar 

  106. Stone WL, Lemanek KL. Developmental issues in children’s self-reports. In: Harter S, La Greca A, editors. Through the eyes of a child. Boston (MA): Allyn & Boston, 1990

    Google Scholar 

  107. Crittenden PM. Peering into the black box: an exploratory treatise on the development of self in young children. In: Cicchetti D, Toth SL, editors. Disorders and dysfunctions of the self. Rochester Symposium on Developmental Psychopathology. Rochester (NY): University of Rochester University, 1994

    Google Scholar 

  108. Masten AC, Coatsworth JD. The development of competence in favorable and unfavorable environments: lessons for research on successful children. Am Psychol 1998; 53: 205–20

    Article  PubMed  CAS  Google Scholar 

  109. Chambers CT, Johnston C. Developmental differences in children’s use of rating scales. J Pediatr Psychol 2002; 27 (1): 2736

    Article  Google Scholar 

  110. Jobe JB. Cognitive psychology and self-reports: models and methods. Qual Life Res 2003; 12: 219–27

    Article  PubMed  Google Scholar 

  111. Barr RD, 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. Fur J Cancer 1999; 35: 248–55

    CAS  Google Scholar 

  112. Drummond MF, O’Brien B, Stoddart GL, Torrance GW. Methods for the Economic Evaluation of Health Care Programmes. 2nd ed. New York (NY): Oxford University Press, 1997

    Google Scholar 

  113. Kopec JA, Willison KD. A comparative review of four preference-weighted measures of health-related quality of life. J Clin Epidemiol 2003; 56: 317–25

    Article  PubMed  Google Scholar 

  114. Cheng AK, Rubin HR, Powe NR, et al. Cost-utility analysis of the cochlear implant in children. JAMA 2000; 284: 850–6

    Article  PubMed  CAS  Google Scholar 

  115. Oostenbrink R, Moll HA, Essink-Bot ML. The EQ-5D and the Health Utilities Index for permanent sequelae after meningitis: a head-to-head comparison. J Clin Epidemiol 2002; 55: 791–9

    Article  PubMed  Google Scholar 

  116. Ruedin HJ, Ess S, Zimmermann HP, et al. Invasive meningococcal and pneumococcal disease in Switzerland: cost-utility analysis of different vaccine strategies. Vaccine 2003; 21: 4145–52

    Article  PubMed  Google Scholar 

  117. Midgley DE, Bradlee TA, Donohoe C, et al. Health-related quality of life in long-term survivors of pediatric liver transplantation. Liver Transpl 2000; 6: 333–9

    Article  PubMed  CAS  Google Scholar 

  118. Brunner HI, Maker D, Grundland B, et al. Preference-based measurement of health-related quality of life (HRQL) in children with chronic musculoskeletal disorders (MSKDs). Med Decis Making 2003; 23: 314–22

    Article  PubMed  CAS  Google Scholar 

  119. O’Neill C, O’Donoghue GM, Archbold SM, et al. A cost-utility analysis of pediatric cochlear implantation. Laryngoscope 2000; 110: 156–60

    Article  PubMed  Google Scholar 

  120. Bichey BG, Hoversland JM, Wynne MK, et al. Changes in quality of life and the cost-utility associated with cochlear implantation in patients with large vestibular aqueduct syndrome. Otol Neurotol 2002; 23: 323–7

    Article  PubMed  Google Scholar 

  121. Cadman D, Goldsmith C, Torrance GW, et al. Development of a health status index for Ontario children: final Report to Ontario Ministry of Health. Research Gran DM648: (00633). Hamilton (ON): McMaster University, Centre for Health Economics and Policy Analysis, 1996

    Google Scholar 

  122. Torrance GW, Feeny DH, Furlong WJ, et al. Multiattribute utility function for a comprehensive health status classification system: Health Utilities Index Mark 2. Med Care 1996; 34: 702–22

    Article  PubMed  CAS  Google Scholar 

  123. Horsman J, Furlong W, Feeny D, et al. The Health Utilities Index (HUI): concepts, measurement properties and applications. Health Qual Life Outcomes 2003; 1 (1): 54

    Article  PubMed  Google Scholar 

  124. Stolk EA, Busschbach JJV, Vogels T. Performance of the EuroQol in children with imperforate anus. Qual Life Res 2000; 9: 29–38

    Article  PubMed  CAS  Google Scholar 

  125. Dorman PJ, Waddell F, Slattery J, et al. Are proxy assessments of health status after stroke with the EuroQol questionnaire feasible, accurate, and unbiased? Stroke 1997; 28: 1883–7

    Article  PubMed  CAS  Google Scholar 

  126. Dolan P. Modeling valuations for EuroQol health states. Med Care 1997; 35: 1095–108

    Article  PubMed  CAS  Google Scholar 

  127. Petrou S. Methodological issues raised by preference-based approaches to measuring the health status of children. Health Econ 2003; 12: 697–702

    Article  PubMed  Google Scholar 

  128. Gemke RJBJ, Bonsel GJ. Reliability and validity of a comprehensive health status measure in a heterogeneous population of children admitted to intensive care. J Clin Epidemiol 1996; 49: 327–33

    Article  PubMed  CAS  Google Scholar 

  129. Oostenbrink R, Oostenbrink JB, Moons KGM, et al. Cost-utility analysis of patient care in children with meningeal signs. Int J Technol Assess Health Care 2002; 18: 485–96

    PubMed  Google Scholar 

  130. Wamboldt FS, Spahn JD, Klinnert MD, et al. Clinical outcomes of steroid-insensitive asthma. Ann Allergy Asthma Immunol 1999; 83: 55–60

    Article  PubMed  CAS  Google Scholar 

  131. Knorr B, Franchi LM, Bisgaard H, et al. Montelukast, a leukotriene receptor antagonist, for the treatment of persistent asthma in children aged 2 to 5 years. Pediatrics 2001; 108: e48

    Article  PubMed  CAS  Google Scholar 

  132. Lai DS, Lue KH, Hsieh JC, et al. The comparison of the efficacy and safety of cetirizine, oxatomide, ketotifen, and a placebo for the treatment of childhood perennial allergic rhinitis. Ann Allergy Asthma Immunol 2002; 89: 589–98

    Article  PubMed  CAS  Google Scholar 

  133. Whalley D, Huels J, McKenna SP, et al. The benefit of pimecrolimus (Elidel, SDZ ASM 981) on parents’ quality of life in the treatment of pediatric atopic dermatitis. Pediatrics 2002; 110: 1133–6

    Article  PubMed  Google Scholar 

  134. Thomas KS, Armstrong S, Avery A, et al. Randomised controlled trial of short bursts of a potent topical corticosteroid versus prolonged use of a mild preparation for children with mild or moderate atopic eczema. BMJ 2002; 324: 768–71

    Article  PubMed  CAS  Google Scholar 

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Acknowledgements

Dr De Civita is supported by a Canadian Institutes of Health Research post-doctoral fellowship.

Dr Fitzgerald has a Canadian Institutes of Health Research (CIHR)/BC Lung Scientist Award and a Michael Smith Distinguished Scholar Award.

Dr Marra is supported by a Canadian Arthritis Network Scholar Award and a Michael Smith Foundation for Health Research Scholar Award.

None of the authors have any potential conflicts of interest that may arise from the publication of this manuscript.

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Correspondence to Carlo A. Marra.

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De Civita, M., Regier, D., Alamgir, A.H. et al. Evaluating health-related quality-of-life studies in paediatric populations. Pharmacoeconomics 23, 659–685 (2005). https://doi.org/10.2165/00019053-200523070-00003

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