PharmacoEconomics

, Volume 24, Issue 12, pp 1199–1220 | Cite as

Generic Health-Related Quality-of-Life Assessment in Children and Adolescents

Methodological Considerations
  • Ulrike Ravens-Sieberer
  • Michael Erhart
  • Nora Wille
  • Ralf Wetzel
  • Jennifer Nickel
  • Monika Bullinger
Review Article

Abstract

The health-related quality of life (HR-QOL) of children and adolescents is increasingly considered a relevant topic for research. Instruments to assess quality of life in children and adolescents of a generic as well as disease- or condition-specific nature are being developed and applied in epidemiological surveys, clinical studies, quality assurance and health economics. This paper attempts to give an overview on the state of the art of HR-QOL assessment in children as it relates to methodological and conceptual challenges. Instruments available in international or cross-cultural research to assess HR-QOL in generic terms were identified and described according to psychometric data provided and the width of application.

In an initial literature search, several challenges in the assessment of child and adolescent HR-QOL were identified, ranging from conceptual and methodological to practical aspects. Seven specific major issues were considered: (i) What are the dimensions of HR-QOL relevant for children and adolescents, and do suitable instruments for their measurement exist? (ii) Can these dimensions be collected in a cross-culturally comparable way? (iii) What advantages and disadvantages do self-rated versus externally evaluated HR-QOL measurements of children and adolescents have? (iv) How can HR-QOL be assessed in an age-appropriate way? (v) What are the advantages and disadvantages of disease-specific and generic data collection? (vi) What advantages and disadvantages do profile and index instruments have? (vii) How can HR-QOL be connected with utility- preference values? In a second literature search we identified nine generic HR-QOL instruments and four utility health state classification systems that complied with the prespecified inclusion criteria.

It was concluded that (i) HR-QOL instruments are available to assess the dimensions of the construct relevant to children and adolescents; (ii) provided that an instrument was constructed in an appropriate way, the dimensions of HR-QOL can be measured in an interculturally comparable manner; (iii) the HR-QOL of children and adolescents can and should be ascertained by self-rating; (iv) the measurement instruments used have to consider maturity and cognitive development; (v) only generic quality-of-life instruments allow for an assessment of HRQOL in both healthy and chronically ill children and adolescents; (vi) the representation of HR-QOL achieved through a singular index value is connected to strict psychometric conditions: the index instrument has to be tailored to these psychometric conditions; (vii) how far utility measures are employable with children and adolescents has to be investigated in further studies.

The problem aspects identified indicate the necessity for further research. Nevertheless, instruments for assessing the HR-QOL of children and adolescents can be identified that meet the requirements mentioned above.

References

  1. 1.
    Bullinger M. Assessing health related quality of life in medicine: an overview over concepts,methods and applications in international research. Restorat Neurol Neurosci 2002; 20 (3–4): 93–101Google Scholar
  2. 2.
    Sullivan M. The new subjective medicine: taking the patient’s point of view on health care and health. Soc Sci Med 2003; 56 (7): 1595–1604PubMedCrossRefGoogle Scholar
  3. 3.
    World Health Organization. Constitution of the World Health Organization. Geneva: World Health Organization, 1948Google Scholar
  4. 4.
    Bircher J. Towards a dynamic definition of health and disease. Med Health Care Philos 2005; 8 (3): 335–341PubMedCrossRefGoogle Scholar
  5. 5.
    Schumacher J, Klaiberg A, Br ähler E. Diagnostik von Lebensqualität und Wohlbefinden -Eine Einführung. In: Schumacher J, Klaiberg A, Br ähler E, editors. Diagnostische Verfahren zu Lebensqualität und Wohlbefinden. Göttingen: Hogrefe, 2003: 9–24Google Scholar
  6. 6.
    Ware JE. Conceptualization and measurement of health-related quality of life: comments on an evolving field. Arch Phys Med Rehabil 2003; 84 Suppl. 2: 43–51CrossRefGoogle Scholar
  7. 7.
    Radoschewski M. Gesundheitsbezogene Lebensqualität -Konzepte und Maâe. Entwicklungen und Stand im Überblick. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2000; 43 (3): 165–189CrossRefGoogle Scholar
  8. 8.
    Bruce B, Fries JF. The Health Assessment Questionnaire (HAQ). Clin Exp Rheumatol 2005; 23 (5) Suppl. 39: S14–S18PubMedGoogle Scholar
  9. 9.
    Taillefer M, Dupuis G, Roberge M, et al. Health-related quality of life models: systematic review of the literature. Soc Indic Res 2003; 64 (2): 293–323CrossRefGoogle Scholar
  10. 10.
    WHOQOL Group. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41 (10): 1403–1409CrossRefGoogle Scholar
  11. 11.
    Wasem J, Hessel F. Gesundheitsbezogene Lebensqualität und Gesundheitsökonomie. In: Ravens-Sieberer U, Cieza A, editors. Lebensqualität und Gesundheitsökonomie in der Medizin. Landsberg: Ecomed, 2000: 319–335Google Scholar
  12. 12.
    Seid M, Varni JW, Segall D, et al. Health-related quality of life as a predictor of pediatric healthcare costs: a two-year prospective cohort analysis. Health Qual Life Outcomes 2004; 2: 48PubMedCrossRefGoogle Scholar
  13. 13.
    Patrick DL, Richardson M, Starks HE, et al. Rethinking prevention for people with disabilities, part II: a framework for designing interventions. Am J Health Promot 1997; 11 (4): 261–263PubMedCrossRefGoogle Scholar
  14. 14.
    Varni JW, Burwinkle TN, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes 2005; 3 (1): 34PubMedCrossRefGoogle Scholar
  15. 15.
    Perrin JM. Health services research for children with disabilities. Milbank Q. 2002; 80 (2): 303–324PubMedCrossRefGoogle Scholar
  16. 16.
    Clarke S, Eiser C. The measurement of health-related quality of life (QoL) in paediatric clinical trials: a systematic review. Health Qual Life Outcomes 2004; 2: 66PubMedCrossRefGoogle Scholar
  17. 17.
    Ravens-Sieberer U, Cieza A. Lebensqualitätsforschung in Deutschland -Forschungsstand, Methoden, Anwendungsbeispiele und Implikationen. In: Ravens-Sieberer U, Cieza A, editors. Lebensqualität und Gesundheitsökonomie in der Medizin. Konzepte -Methoden -Anwendungen. Landsberg: Ecomed, 2000: 25–49Google Scholar
  18. 18.
    Connolly MA, Johnson JA. Measuring quality of life in pediatric patients. Pharmacoeconomics 1999; 16 (6): 605–625PubMedCrossRefGoogle Scholar
  19. 19.
    Andelman RB, Attkisson CC, Rosenblatt AB. Quality of life of children: toward conceptual clarity. In: Maruish ME, editor. The use of psychological testing for treatment planning and outcomes assessment. Vol 2: instruments for children and adolescents. 3rd ed. Mahwah (NJ): Lawrence Erlbaum Associates, 2004: 477–510Google Scholar
  20. 20.
    De Civita M, Regier D, Alamgir AH, et al. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics 2005; 23 (7): 659–685CrossRefGoogle Scholar
  21. 21.
    Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child 2001; 84 (3): 205–211PubMedCrossRefGoogle Scholar
  22. 22.
    Griebsch I, Coast J, Brown J. Quality-adjusted life-years lack quality in pediatric care: a critical review of published costutility studies in child health. Pediatrics 2005; 115 (5): 600–614CrossRefGoogle Scholar
  23. 23.
    Koot HM, Wallander M, editors. Quality of life in children and adolescents: concepts, methods and findings. Rotterdam: Brunner-Routledge, 2001Google Scholar
  24. 24.
    Levi RB, Drotar D. Health-related quality of life in childhood cancer: discrepancy in parent-child reports. Int J Cancer Suppl 1999; 12: 58–64PubMedCrossRefGoogle Scholar
  25. 25.
    Mattejat F, Remschmidt H. The assessing the quality of life of children and adolescents with psychiatric disorders —a review. Z Kinder Jug-Psych 1998; 26 (3): 183–196Google Scholar
  26. 26.
    Matza LS, Swensen AR, Flood EM, et al. Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value Health 2004; 7 (1): 79–92PubMedCrossRefGoogle Scholar
  27. 27.
    Pickard S, Topfer LA, Feeny DH. A structured review of studies on health-related quality of life and economic evaluation in pediatric acute lymphoblastic leukemia. J Natl Cancer Inst Monographs 2004; 33: 102–125PubMedCrossRefGoogle Scholar
  28. 28.
    Rajmil L, Herdman M, De Sanmamed MJF, et al. Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content. J Adol Health 2004; 34 (1): 37–45CrossRefGoogle Scholar
  29. 29.
    Ravens-Sieberer U. Verfahren zur Erfassung der gesundheitsbezogenen Lebensqualität bei Kindern und Jugendlichen -Ein Überblick. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2000; 43 (3): 198–209CrossRefGoogle Scholar
  30. 30.
    Wallander JL, Schmitt M, Koot HM. Quality of life measurement in children and adolescents: Issues, instruments, and applications. J Clin Psychol 2001; 57 (4): 571–585PubMedCrossRefGoogle Scholar
  31. 31.
    Herdman M, Rajmil L, Ravens-Sieberer U, et al. Expert consensus in the development of a European health-related quality of life measure for children and adolescents: a Delphi study. Acta Paediatr 2002; 91 (12): 1385–1390PubMedCrossRefGoogle Scholar
  32. 32.
    Ravens Sieberer U, Gosch A, Abel T, et al. Quality of life in children and adolescents —a european public health perspective. Soz Praventivmed 2001; 46 (5): 297–302Google Scholar
  33. 33.
    Leidy NK, Revicki DA, Geneste B. Recommendations for evaluation the validity of quality of life claims for labeling and promotion. Value Health 1999; 2 (2): 113–127PubMedCrossRefGoogle Scholar
  34. 34.
    Klocke A, Becker U. Die Lebenswelt Familie und ihre Auswirkungen auf die Gesundheit von Jugendlichen. In: Hurrelmann K, Klocke A, Melzer W, Ravens-Sieberer U, editors. Jugendgesundheitssurvey. Internationale Vergleichsstudie der Weltgesundheitsorganisation WHO. Weinheim: Juventa, 2003: 183–241Google Scholar
  35. 35.
    Bullinger M, Ravens-Sieberer U. Grundlagen, Methoden und Anwendungsgebiete der Lebensqualitätsforschung bei Kindern. Praxis Kinderpsychol Kinderpsychiatr 1995; 44 (10): 391–398Google Scholar
  36. 36.
    Schor EL. Children’s health and the assessment of health-related quality of life. In: Drotar D, editor. Measuring health-related quality of life in children and adolescents. Mahwah (NJ): Lawrence Hillbaum, 1998: 25–39Google Scholar
  37. 37.
    Bullinger M, Schmidt S, Petersen C, and the DISABKIDS Group. Assessing quality of life of children with chronic health conditions and disabilities: a European approach. Int J Rehab Res 2002; 25 (3): 197–206CrossRefGoogle Scholar
  38. 38.
    World Health Organization, Division of Mental Health. Measurement of quality of life in children. MNH/PSF/94.5. Geneva: World Health Organization, 1994Google Scholar
  39. 39.
    Landgraf JM, Maunsell E, Speechley KN, et al. Canadian-French, German and UK versions of the Child Health Questionnaire: methodology and preliminary item scaling results. Qual Life Res 1998; 7 (5): 433–445PubMedCrossRefGoogle Scholar
  40. 40.
    Starfield B, Bergner M, Ensminger M, et al. Adolescent health status measurement: development of the Child Health and Illness Profile. Pediatrics 1993; 91 (2): 430–435PubMedGoogle Scholar
  41. 41.
    Starfield B, Riley A, Green B, et al. The Child Health and Illness Profile. A population-based measure of health. Med Care 1995; 33 (5): 553–566PubMedCrossRefGoogle Scholar
  42. 42.
    Petersen C, Schmidt S, Power M, et al. Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Qual Life Res 2005; 14 (4): 1065–1077PubMedCrossRefGoogle Scholar
  43. 43.
    Baars RM, Atherton CI, Koopman HM, et al. The European DISABKIDS project: the development of seven disease specific modules to measure health related quality of life in children and adolescents. Health Qual Life Outcomes 2005; 3: 70PubMedCrossRefGoogle Scholar
  44. 44.
    Bruil J, Maes S, le Coq L, et al. The development of the How Are You (HAY), a quality of life questionnaire for children with a chronic illness. QOL Newsl 1996; 13: 9Google Scholar
  45. 45.
    Ravens-Sieberer U, Gosch A, Rajmil L, et al. The KIDSCREEN-52 quality of life measure for children and adolescents: development and first results from a European survey. Expert Rev Pharmacoecon Outcomes Res 2005; 5 (3): 353–364PubMedCrossRefGoogle Scholar
  46. 46.
    Ravens-Sieberer U. Der Kindl-R Fragebogen zur Erfassung der gesundheitsbezogenen Lebensqualität bei Kindern und Jugendlichen —Revidierte Form. In: Schumacher J, Klaiberg A, Br ähler E, editors. Diagnostische Verfahren zu Lebensqualität und Wohlbefinden. Göttingen: Hogrefe, 2003: 184–188Google Scholar
  47. 47.
    Ravens-Sieberer U, Bullinger M. Assessing health related quali-ty of life in chronically ill children with the german KINDL: first psychomertric and content analytical results. Qual Life Res 1998; 7 (5): 399–407PubMedCrossRefGoogle Scholar
  48. 48.
    Varni JW, Seid M, Rode CA. The PedsQLTM: measurement model for the pediatric quality of life inventory. Med Care 1999; 37 (2): 126–139PubMedCrossRefGoogle Scholar
  49. 49.
    Vogels T, Verrips GH, Verloove-Vanhorick SP, et al. Measuring health-related quality of life in children: the development of the TACQOL parent form. Qual Life Res 1998; 7 (5): 457–465PubMedCrossRefGoogle Scholar
  50. 50.
    Simeoni MC, Auquier P, Antoniotte S, et al. Validation of a French health-related quality of life intrument for adolescents: the VSP-A. Qual Life Res 2000; 9 (4): 393–403PubMedCrossRefGoogle Scholar
  51. 51.
    Sapin C, Simeoni MC, El Khammar M, et al. Reliability and validity of the VSP-A, a health-related quality of life instrument for ill and healthy adolescents. J Adolesc Health 2005; 36 (4): 327–336PubMedCrossRefGoogle Scholar
  52. 52.
    Patrick DL, Edwards TC, Topolski TD. Adolescents quality of life, Part II: initial validation of a new instrument. J Adoloesc 2002; 25 (3): 287–300CrossRefGoogle Scholar
  53. 53.
    Riley AW, Green BF, Forrest CB, et al. A taxonomy of adolescent health: development of the adolescent health profile-types. Med Care 1998; 36 (8): 1228–1236PubMedCrossRefGoogle Scholar
  54. 54.
    le Coq EM, Colland VT, Boeke AJP, et al. Reproducibility, construct validity, and responsiveness of the “How Are You?” (HAY), a self-report quality of life questionnaire for children with asthma. J Asthma 2000; 37 (1): 43–58PubMedCrossRefGoogle Scholar
  55. 55.
    Embretson SE, Reise SP. Item response theory for psychologists. Mahwah (NJ): Lawrence Erlbaum Associates, 2000Google Scholar
  56. 56.
    Camilli G, Shepard LA. Methods for identifying biased test items. London: Sage Publications, 1994Google Scholar
  57. 57.
    Erhart M, Power M, Auquier P, et al. Item-response-theory-analyses of adolescent quality of life data: development of the European cross cultural research instrument “KIDSCREEN”. In: Stoffregen M, editor. Abstracts of the 5th Conference of ISQOLS. Blacksburg (VA): ISQOLS, 2003Google Scholar
  58. 58.
    Schwimmer JB, Burwinkle TM, Varni JW. Health-related quality of life of severely obese children and adolescents. JAMA 2003; 289: 1813–1819PubMedCrossRefGoogle Scholar
  59. 59.
    Edwards TC, Huebner CE, Conell FA, et al. Adolescents quality of life, Part I: conceptual and measurement model. J Adolesc 2002; 25 (3): 275–286PubMedCrossRefGoogle Scholar
  60. 60.
    Topolski TD, Patrick DL, Edwards TC, et al. Quality of life and health-risk behaviors among adolescents. J Adolesc Health 2001; 29 (6): 426–435PubMedCrossRefGoogle Scholar
  61. 61.
    Swaine-Verdier A, Doward L, Hagell P, et al. Adapting quality of life instruments. Value Health 2004; 7 Suppl. 1: 27–30CrossRefGoogle Scholar
  62. 62.
    Skevington SM, Sartorius N, Amir M. Developing methods for assessing quality of life in different cultural settings: the history of the WHOQOL instruments. Soc Psychiatry Psychiatr Epidemiol 2004; 39 (1): 1–8PubMedCrossRefGoogle Scholar
  63. 63.
    Bullinger M. Lebensqualität -Aktueller Stand und neuere Entwicklungen der internationalen Lebensqualitätsforschung. In: Ravens-Sieberer U, Cieza A, editors. Lebensqualität und Gesundheitsökonomie in der Medizin. Konzepte -Methoden -Anwendungen. Landsberg: Ecomed, 2000: 13–24Google Scholar
  64. 64.
    Eiser C, Morse R. Can parents rate their child. Qual Life Res 2001; 10 (4): 347–357PubMedCrossRefGoogle Scholar
  65. 65.
    Eiser C, Jenney ME. Measuring symptomatic benfit and quality of life in pediatric oncology. Br J Cancer 1996; 73 (11): 1313–1316PubMedCrossRefGoogle Scholar
  66. 66.
    Guyatt GH, Juniper EF, Griffith LE, et al. Children and adult perceptions of childhood asthma. Pediatrics 1997; 99 (2): 165–168PubMedCrossRefGoogle Scholar
  67. 67.
    Pickard AS, Knight SJ. Proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives. Med Care 2005; 43 (5): 493–499PubMedCrossRefGoogle Scholar
  68. 68.
    Landgraf JM, Abetz L, Ware JE. Child Health Questionnaire: a user’s manual. Boston (MA): The Health Isntitute, New England Medical Center, 1996Google Scholar
  69. 69.
    Chang PC, Yeh CH. Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psychooncology 2005; 14 (2): 125–134PubMedCrossRefGoogle Scholar
  70. 70.
    Saigal S, Furlong WJ, Rosenbaum PL, et al. Do teens differ from parents in rating health-related quality of life? A study of premature and control teen/parent dyads [abstract]. Pediatr Res 1995; 37: 271ACrossRefGoogle Scholar
  71. 71.
    Levi R, Drotar D. Critical issues and needs in health-related quality of life assessment of children and adolescents with chronic health conditions. In: Drotar D, editor. Measuring health-related quality of life in children and adolescents implications for research and practice. Mahwah (NJ): Lawrence Erlbaum Associates; 1998: 3–23Google Scholar
  72. 72.
    Yeh CH, Chang CW, Chang PC. Evaluating quality of life in children with cancer using children’s self-reports and parent-proxy reports. Nurs Res 2005; 54 (5): 354–362PubMedCrossRefGoogle Scholar
  73. 73.
    Redegeld M. Lebensqualität chronisch kranker Kinder und Jugendlicher: Eltern- vs. Kinderperspektive. Hamburg: Verlag, 2004Google Scholar
  74. 74.
    Theunissen NC, Vogels TG, Koopman HM, et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 1998; 7 (5): 387–397PubMedCrossRefGoogle Scholar
  75. 75.
    Annett RD. Assessment of health status and quality of life outcomes for children with asthma. J Allergy Clin Immunol 2001; 107 Suppl. 5: S473–S481PubMedCrossRefGoogle Scholar
  76. 76.
    Rebok G, Riley A, Forrest C, et al. Elementary school aged children’s report of their health: a cognitive interviewing study. Qual Life Res 2001; 10 (1): 59–70PubMedCrossRefGoogle Scholar
  77. 77.
    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 (1): 67–76PubMedCrossRefGoogle Scholar
  78. 78.
    Riley AW. Evidence that school-age children can self-report on their health. Ambul Pediatr 2004; 4 Suppl. 4: 371–376PubMedCrossRefGoogle Scholar
  79. 79.
    Harter S, Whitesell NR. Developmental changes in children’s understanding of single, multiple and blended emotion concepts. In: Saarni E, Harris PL, editors. Children’s understanding of emotion. New York (NY): Cambridge University Press, 1989: 81–116Google Scholar
  80. 80.
    Herschbach P. Das “Zufriedenheitsparadox” in der Lebensqualitätsforschung. Psychother Psychosom Med Psychol 2002; 52 (3–4): 141–150PubMedCrossRefGoogle Scholar
  81. 81.
    Schwartz CE, Sprangers MAG, editors. Adaptation to changing health: response shift in quality-of-life research. Washington, DC: American Psychological Association, 2000Google Scholar
  82. 82.
    Sprangers MAG, Schwartz CE. Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med 1999; 48 (11): 1507–1515PubMedCrossRefGoogle Scholar
  83. 83.
    Christie MJ, French D, Sowden A, et al. Development of childcentered disease-specific questionnaires for living with asthma. Psychosom Med 1993; 55 (6): 541–548PubMedGoogle Scholar
  84. 84.
    Juniper EF. Quality of life in adults and children with asthma and rhinitis. Allergy 1997; 52 (10): 971–977PubMedCrossRefGoogle Scholar
  85. 85.
    De Jong Z, van der Heijde D, McKenna S, et al. The reliability and construct validity of the RAQoL: a rheumatoid arthritis-specific quality of life instrument. Br J Rheumatol 1997; 36 (8): 878–883CrossRefGoogle Scholar
  86. 86.
    Wetzel RM. Vergleich telefonischer und postalischer Befragung zur Erfassung der psychosozialen Gesundheit von Kindern und Jugendlichen in Selbst- und Fremdurteil [online]. Available from URL: http://opus.kobv.de/tuberlin/frontdoor.php?source_opus=1399 [Accessed 2006 Oct 16]Google Scholar
  87. 87.
    Doward LC, Meads DM, Thorsen H. Requirements for quality of life instruments in clinical research. Value Health 2004; 7 Suppl. 1: S13–S16PubMedCrossRefGoogle Scholar
  88. 88.
    Bullinger M. Forschungsinstrumente zur Erfassung der Lebensqualität bei Krebs -ein Überblick. In: Verres B, Hasenbring M, editors. Psychosoziale Aspekte der Krebsforschung (Psychosoziale Onkologie) Jahrbuch der Medizinischen Psychologie. 3rd ed. Berlin: Springer, 1989: 45–57Google Scholar
  89. 89.
    Rogerson RJ. Environmental and health-related quality of life: conceptual and methodological similarities. Soc Sci Med 1995; 41 (10): 1373–1382PubMedCrossRefGoogle Scholar
  90. 90.
    Murray CJL, Lopez AD. The utility of DALYs for public health policy and research: a reply. Bull World Health Organ 1997; 75 (4): 377–381PubMedGoogle Scholar
  91. 91.
    Greiner W, Uber A. Gesundheitsökonomische Studien und der Einsatz von Lebensqualitätsindices am Beispiel des LQ-Indexes EQ-5D (EuroQol). In: Ravens-Sieberer U, Cieza A, editors. Lebensqualität und Gesundheitsökonomie in der Medizin. Konzepte -Methoden -Anwendungen. Landsberg: Ecomed, 2000: 336–352Google Scholar
  92. 92.
    McNemar Q. Opinion-attitude methodology. Psychol Bull 1946; 43: 289–374PubMedCrossRefGoogle Scholar
  93. 93.
    Van Abswoude AH, van der Ark LA, Sijtsma K. A comparative study of test data dimensionality assessment procedures under nonparametric IRT models. Appl Psych Meas 2004; 28 (1): 3–24CrossRefGoogle Scholar
  94. 94.
    Hattie J, Krakowski K, Rogers HJ, et al. An assessment of Stout’s index of essential unidimensionality. Appl Psych Meas 1996; 20 (1): 1–14CrossRefGoogle Scholar
  95. 95.
    Reise SP, Waller NG, Comrey AL. Factor analysis and scale revision. Psychol Assess 2000; 12 (3): 287–297PubMedCrossRefGoogle Scholar
  96. 96.
    Coste J, Bouée S, Ecosse E, et al. Methodological issues in determining the dimensionality of composite health measures using principal component analysis: case illustration and suggestions for practice. Qual Life Res 2005; 14 (3): 641–654PubMedCrossRefGoogle Scholar
  97. 97.
    Ware JE. Conceptualizing and measuring generic health outcomes. Cancer 1991; 67 Suppl. 3: 774–779PubMedCrossRefGoogle Scholar
  98. 98.
    Kaplan RM. Health outcome models for policy analysis. Health Psychol 1989; 8 (6): 723–735PubMedCrossRefGoogle Scholar
  99. 99.
    Böhmer S, Kohlmann T. Verfahren zur Bewertung von Gesundheitszuständen und Lebensqualität. In: Ravens-Sieberer U, Cieza A, editors. Lebensqualität und Gesundheitsökonomie in der Medizin. Konzepte -Methoden -Anwendungen. Landsberg: Ecomed, 2000: 53–72Google Scholar
  100. 100.
    Torrance GW, Thomas W, Sacket D. A utility maximation model for evaluation of health care programs. Health Serv Res 1972; 7 (2): 118–133PubMedGoogle Scholar
  101. 101.
    Diener A, O’Brian B, Gafni A. Health care contingent valuation studies: a review and classification of the literature. Health Econ 1998; 7 (4): 313–326PubMedCrossRefGoogle Scholar
  102. 102.
    Nord E. The person-trade-off approach to valuing health care programs. Med Decis Making 1995; 15 (3): 287–288CrossRefGoogle Scholar
  103. 103.
    De Wit GA, Merkus MP, Krediet RT, et al. Health profiles and health preferences of dialysis patients. Nephrol Dial Transplant 2002; 17 (1): 86–92CrossRefGoogle Scholar
  104. 104.
    Maor Y, King M, Olmer L, et al. A comparison of three measures: the time trade-off technique, global health-related quality of life and the SF-36 in dialysis patients. J Clin Epidemiol 2001; 54 (6): 565–570PubMedCrossRefGoogle Scholar
  105. 105.
    Goosens MEJB, Vlaeyen JWS, Rutten-van MöLolken MPMH, et al. Patient utilities in chronic musculoskeletal pain: how useful is the standard gamble method? Pain 1999; 80 (1–2): 365–375CrossRefGoogle Scholar
  106. 106.
    Woloshin S, Schawrtz LM, Moncur M, et al. Assessing values for health: numeracy matters. Med Decis Making 2001; 21 (5): 382–390PubMedCrossRefGoogle Scholar
  107. 107.
    Boyle MH, Torrance GW. Developing multiattribute health indexes. Med Care 1984; 22 (11): 1045–1057PubMedCrossRefGoogle Scholar
  108. 108.
    Apajasalo M, Rautonen J, Holmberg C, et al. Quality of life in preadolescence: a 17-dimensional health-related quality of life measure (17D). Qual Life Res 1996; 5 (6): 532–538PubMedCrossRefGoogle Scholar
  109. 109.
    EuroQol Group. EuroQol —a new facility for the measurement of health related quality of life. Health Policy 1990; 16 (3): 199–208CrossRefGoogle Scholar
  110. 110.
    Hennessy S, Kind P. Measuring health status in children: developing and testing a child-friendly version of EQ-5D. Proceedings of the 19th Plenary Meeting of the EuroQol Group; 2002 Sep 13–14; York: 291–310Google Scholar
  111. 111.
    Feeny D, Furlong W, Barr RD. Multiattribute approach to the assessment of health-related quality of life: Health Utilities Index. Med Pediatr Oncol 1998; 31 Suppl. 1: 54–59CrossRefGoogle Scholar
  112. 112.
    Kaplan SH, Barlow S, Spetter D, et al. Assessing functional status and health-related quality of life among school-aged children; reliability and validity of a new self-reported measure. Qual Life Res 1995; 4 (5): 444Google Scholar
  113. 113.
    Stolk EA, Busschbach JJ, Vogels T. Performance of the EuroQol in children with imperforate anus. Qual Life Res 2000; 9 (1): 29–38PubMedCrossRefGoogle Scholar
  114. 114.
    Vitale MG, Levy DE, Johnson MG, et al. Assessment of quality of life in adolescent patients with orthopaedic problems: are adults measures appropriate? J Pediatr Orthop 2001; 21 (5): 622–662PubMedGoogle Scholar
  115. 115.
    Trudel JG, Rivard M, Dobkin PL, et al. Psychometric properties of the Health Utilities Index Mark 2 system in paediatric oncology patients. Qual Life Res 1998; 7 (5): 421–432PubMedCrossRefGoogle Scholar
  116. 16.
    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: 67–76PubMedCrossRefGoogle Scholar
  117. 117.
    Horsman J, Furlong W, Feeny D, et al. The Health Utilities Index (HUI®): concepts, measurement properties and applications. Health Qual Life Outcomes 2003; 1: 54PubMedCrossRefGoogle Scholar
  118. 118.
    Richards JM, Hemstreet MP. Measures of life quality, role performance, and functional status in asthma research. Am J Respir Crit Care Med 1994; 149 (2): 31–39Google Scholar
  119. 119.
    Yi MS, Britto MT, Wilmott RW, et al. Health values of adolescents with cystic fibrosis. J Pediatr 2003; 142 (2): 133–140PubMedCrossRefGoogle Scholar
  120. 120.
    Brunner HI, Maker D, Grundland B, et al. Preference-based measurement of health-related quality of life (HRQL) in children with chronic musculosceletal disorders (MSKDs). Med Decis Making 2003; 23 (4): 314–322PubMedCrossRefGoogle Scholar
  121. 121.
    Kopec JA, Willison KD. A comparative review of four preference-weighted measures of health-related quality of life. J Clin Epidemiol 2003; 56 (4): 317–325PubMedCrossRefGoogle Scholar
  122. 122.
    Sung L, Young NL, Greenberga ML, et al. Health-related quality of life (HRQL) scores reported from parents and their children with chronic illness differed depending on utility elicitation method. J Clin Epidemiol 2004; 57 (11): 1161–1166PubMedCrossRefGoogle Scholar
  123. 123.
    Parmenter TR. Quality of life as a concept and measurable entity. Soc Indic Res 1994; 33 (1–3): 9–46CrossRefGoogle Scholar

Copyright information

© Adis Data Information BV 2006

Authors and Affiliations

  • Ulrike Ravens-Sieberer
    • 1
    • 2
    • 3
  • Michael Erhart
    • 1
    • 4
  • Nora Wille
    • 1
  • Ralf Wetzel
    • 1
  • Jennifer Nickel
    • 1
  • Monika Bullinger
    • 3
  1. 1.Research Unit Psychosocial HealthRobert Koch-InstitutBerlinGermany
  2. 2.Department of Psychosomatics in Children and Adolescents, Center of Gynaecology, Obstetrics and PaediatricsUniversity Medical Center Hamburg — EppendorfHamburgGermany
  3. 3.School of Public Health, WHO Collaborating Center for Child and Adolescent Health PromotionBielefeld UniversityBielefeldGermany
  4. 4.Department of Medical Psychology, Center of Psychosocial MedicineUniversity Medical Center Hamburg — EppendorfHamburgGermany

Personalised recommendations