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Gesundheitswesen 2013; 75(10): 667-678
DOI: 10.1055/s-0033-1349555
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© Georg Thieme Verlag KG Stuttgart · New York

Erfassung der gesundheitsbezogenen Lebensqualität von Kindern und Jugendlichen

Assessment of Health-Related Quality of Life in Children and Adolescents
U. Ravens-Sieberer
1   Universitätsklinikum Hamburg-Eppendorf, Klinik für Kinder- und Jugendpsychiatrie, -psychotherapie und -psychosomatik
,
F. Klasen
1   Universitätsklinikum Hamburg-Eppendorf, Klinik für Kinder- und Jugendpsychiatrie, -psychotherapie und -psychosomatik
,
H. Bichmann
1   Universitätsklinikum Hamburg-Eppendorf, Klinik für Kinder- und Jugendpsychiatrie, -psychotherapie und -psychosomatik
,
C. Otto
1   Universitätsklinikum Hamburg-Eppendorf, Klinik für Kinder- und Jugendpsychiatrie, -psychotherapie und -psychosomatik
,
J. Quitmann
2   Universitätsklinikum Hamburg-Eppendorf, Institut und Poliklinik für Medizinische Psychologie
,
M. Bullinger
2   Universitätsklinikum Hamburg-Eppendorf, Institut und Poliklinik für Medizinische Psychologie
› Author Affiliations
Further Information

Publication History

Publication Date:
15 October 2013 (online)

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Lernziele

Kenntnisse über

  • die Geschichte des Begriffs Lebensqualität

  • Konzeptualisierung von Lebensqualität bei Kindern und Jugendlichen

  • die Klassifikation von Methoden zur Erfassung von Lebensqualität

  • die Rolle von Alter und Entwicklungsstand in der Messung der Lebensqualität

  • die Beurteilerperspektive in der Lebensqualitätserfassung im Selbstbericht und im Fremdbericht

  • Schritte der Entwicklung und Prüfung von Lebensqualitätsinstrumenten

  • die Verfügbarkeit psychometrisch geprüfter Messinstrumente

  • Kriterien für die Wahl von Lebensqualitätsinstrumenten in der Forschung

  • Möglichkeiten der Nutzung von Lebensqualitätsinstrumenten in der Praxis

 

  • Literatur

  • 1 Bullinger M. Assessing health related quality of life in medicine. An overview over concepts, methods and applications in international research. Restor Neurol Neurosci 2002; 20: 93-101
    PubMedSearch in Google Scholar
  • 2 Sullivan M. The new subjective medicine: taking the patient’s point of view on health care and health. Soc Sci Med 2003; 56: 1595-1604
    CrossrefPubMedSearch in Google Scholar
  • 3 Bircher J. Towards a dynamic definition of health and disease. Med Health Care Philos 2005; 8: 335-341
    CrossrefPubMedSearch in Google Scholar
  • 4 Schumacher J, Klaiberg A, Brähler E. Diagnostische Verfahren zu Lebensqualität und Wohlbefinden – eine Einführung. In: Schumacher J, Klaiberg A, Brähler E, Hrsg. Diagnostische Verfahren zu Lebensqualität und Wohlbefinden. Göttingen: Hogrefe; 2003
    Search in Google Scholar
  • 5 Ware Jr JE. Conceptualization and measurement of health-related quality of life: comments on an evolving field. Arch Phys Med Rehabil 2003; 84: 43-51
    CrossrefPubMedSearch in Google Scholar
  • 6 Radoschewski M. Gesundheitsbezogene Lebensqualität – Konzepte und Maße. Bundesgesundheitsblatt – Gesundheitsforschung – Gesundheitsschutz 2000; 43: 165-189
    CrossrefPubMedSearch in Google Scholar
  • 7 Van Cleave J, Gortmaker SL, Perrin JM. Dynamics of obesity and chronic health conditions among children and youth. JAMA 2010; 303: 623-630
    CrossrefPubMedSearch in Google Scholar
  • 8 Ravens-Sieberer U, Erhart M, Wille N et al. Lebensqualitätsverfahren für Kinder – methodische Herausforderungen und aktuelle Instrumente. Zeitschrift für Medizinische Psychologie 2007; 16: 25-40
    PubMedSearch in Google Scholar
  • 9 World Health Organization – Division of Mental Health. Measurement of Quality of Life in children. MNH/PSF/94.5. Geneva: World Health Organization; 1994
    Search in Google Scholar
  • 10 Nolte S, Rose M. Die Erfassung gesundheitsbezogener Lebensqualität bei Erwachsenen. Das Gesundheitswesen 2013; 75: 166-175
    Thieme ConnectPubMedSearch in Google Scholar
  • 11 Fayed N, De Camargo OK, Kerr E et al. Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions. Developmental Medicine & Child Neurology 2012; 54: 1085-1095
    CrossrefPubMedSearch in Google Scholar
  • 12 Solans M, Pane S, Estrada M-D et al. Health-related quality of life measurement in children and adolescents: A systematic review of generic and disease-specific instruments. Value in Health 2008; 11: 742-764
    CrossrefPubMedSearch in Google Scholar
  • 13 Grange A, Bekker H, Noyes J et al. Adequacy of health-related quality of life measures in children under 5 years old: Systematic review. Journal of Advanced Nursing 2007; 59: 197-220
    CrossrefPubMedSearch in Google Scholar
  • 14 Rajmil L, Herdman M, Fernandez de Sanmamed MJ et al. Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content. J Adolesc Health 2004; 34: 37-45
    CrossrefPubMedSearch in Google Scholar
  • 15 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: 1385-1390
    PubMedSearch in Google Scholar
  • 16 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: 294-302
    CrossrefPubMedSearch in Google Scholar
  • 17 Bullinger M, Schmidt S, Petersen C. Assessing quality of life of children with chronic health conditions and disabilities: a European approach. Int J Rehabil Res 2002; 25: 197-206
    CrossrefPubMedSearch in Google Scholar
  • 18 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: 79-92
    CrossrefPubMedSearch in Google Scholar
  • 19 Petrou S. Methodological issues raised by preference-based approaches to measuring the health status of children. Health Econ 2003; 12: 697-702
    CrossrefPubMedSearch in Google Scholar
  • 20 Harter S, Whitesell NR. Developmental changes in children’s understanding of single, multiple and blended emotion concepts. In: Saarni E, Harris PL, Hrsg. Children’s understanding of emotion. New York: Cambridge University Press; 1989: 81-116
    Search in Google Scholar
  • 21 Bevans KB, Riley AW, Moon J et al. Conceptual and methodological advances in child-reported outcomes measurement. Expert Rev Pharmacoecon Outcomes Res 2010; 10: 385-396
    CrossrefPubMedSearch in Google Scholar
  • 22 Bevans KB, Forrest CB. The reliability and validity of children’s and adolescents’ self-reported health. In: Ungar W, Hrsg. Economic Evaluation of Child Health. Oxford; NY, USA: Oxford University Press; 2010
    Search in Google Scholar
  • 23 Riley AW. Evidence that school-age children can self-report on their health. Ambul Pediatr 2004; 4: 371-376
    CrossrefPubMedSearch in Google Scholar
  • 24 Christie MJ, French D, Sowden A et al. Development of child-centered disease-specific questionnaires for living with asthma. Psychosom Med 1993; 55: 541-548
    PubMedSearch in Google Scholar
  • 25 Rebok G, Riley A, Forrest C et al. Elementary school-aged children’s reports of their health: a cognitive interviewing study. Qual Life Res 2001; 10: 59-70
    CrossrefPubMedSearch in Google Scholar
  • 26 Pickard AS, Knight SJ. Proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives. Med Care 2005; 43: 493-499
    CrossrefPubMedSearch in Google Scholar
  • 27 Davis E, Nicolas C, Waters E et al. Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance. Qual Life Res 2007; 16: 863-871
    CrossrefPubMedSearch in Google Scholar
  • 28 Upton P, Lawford J, Eiser C. Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation 2008; 17: 895-913
    CrossrefPubMedSearch in Google Scholar
  • 29 Ellert U, Ravens-Sieberer U, Erhart M et al. Determinants of agreement between self-reported and parent-assessed quality of life for children in Germany-results of the German Health Interview and Examination Survey for Children and Adolescents (KiGGS). Health and quality of life outcomes 2011; 9: 102
    CrossrefPubMedSearch in Google Scholar
  • 30 Acquadro C, Conway K, Hareendran A et al. Literature Review of Methods to Translate Health-Related Quality of Life Questionnaires for Use in Multinational Clinical Trials. Value in Health 2008; 11: 509-521
    CrossrefPubMedSearch in Google Scholar
  • 31 Ravens-Sieberer U, Gosch A, Rajmil L et al. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoecon Outcomes Res 2005; 5: 353-364
    CrossrefPubMedSearch in Google Scholar
  • 32 Schöffski O. Lebensqualität als Ergebnisparameter in gesundheitsökonomischen Studien. In: Schöffski O, Graf von den Schulenburg JM, Hrsg. Gesundheitsökonomische Evaluationen. Heidelberg: Springer; 2012
    CrossrefSearch in Google Scholar
  • 33 Wainer H, Dorans NJ. Computerized adaptive testing: A primer. 2.. Aufl. Mahwah, NJ [u.a.]: Lawrence Erlbaum Associates; 2000
    Search in Google Scholar
  • 34 Erhart M, Rose M, Ravens-Sieberer U. Können neue Erfassungsmethoden alte Probleme der Wohlbefindensmessung lösen? Item Response Theorie, Itembanking und Computeradaptives Testen am Beispiel der KIDSCREEN-Studie. Zeitschrift für Gesundheitspsychologie 2009; 17: 94-99
    CrossrefPubMedSearch in Google Scholar
  • 35 Embretson SE, Reise SP. Item response theory for psychologists. Reprinted. Aufl. New York, NY [u.a.]: Psychology Press; 2009
    Search in Google Scholar
  • 36 Reeve BB, Hays RD, Bjorner JB et al. Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS). Medical care 2007; 45: 22-31
    CrossrefPubMedSearch in Google Scholar
  • 37 Woloshin S, Schwartz LM, Moncur M et al. Assessing values for health: numeracy matters. Med Decis Making 2001; 21: 382-390
    CrossrefPubMedSearch in Google Scholar
  • 38 Solans M, Pane S, Estrada MD et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value in Health 2008; 11: 742-764
    CrossrefPubMedSearch in Google Scholar
  • 39 Riley AW, Forrest C, Starfield B et al. Child Health and Illness Profile-Child Edition (CHIP-CE). Baltimore, MD: The Johns Hopkins University; 2001
    Search in Google Scholar
  • 40 Starfield B, Bergner M, Ensminger M et al. Child Health and Illness Profile-Adolescent Edition (CHIP-AE). Baltimore, MD: The Johns Hopkins University; 1994
    Search in Google Scholar
  • 41 Riley AW, Green BF, Forrest CB et al. A taxonomy of adolescent health: development of the adolescent health profile-types. Med Care 1998; 36: 1228-1236
    CrossrefPubMedSearch in Google Scholar
  • 42 Riley AW, Forrest CB, Rebok GW et al. The Child Report Form of the CHIP-Child Edition: reliability and validity. Med Care 2004; 42: 221-231
    CrossrefPubMedSearch in Google Scholar
  • 43 Riley AW, Forrest CB, Starfield B et al. The Parent Report Form of the CHIP-Child Edition: reliability and validity. Med Care 2004; 42: 210-220
    CrossrefPubMedSearch in Google Scholar
  • 44 Riley AW, Forrest CB, Starfield B et al. Reliability and Validity of the Adolescent Health Profile-Types. Med Care 1998; 36: 1237-1248
    CrossrefPubMedSearch in Google Scholar
  • 45 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: 433-445
    CrossrefPubMedSearch in Google Scholar
  • 46 Landgraf JM, Abetz L, Ware JE. Child Health Questionnaire: A User’s Manual. Boston, MA: The Health Institute, New England Medical Center; 1996
    Search in Google Scholar
  • 47 Ruperto N, Ravelli A, Pistorio A et al. Cross-cultural adaptation and psychometric evaluation of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ) in 32 countries. Review of the general methodology. Clin Exp Rheumatol 2001; 19: 1-9
    PubMedSearch in Google Scholar
  • 48 Ravens-Sieberer U. Der Kindl-R Fragebogen zur Erfassung der gesundheitsbezogenen Lebensqualität bei Kindern und Jugendlichen – Revidierte Form. In: Schumacher J, Klaiberg A, Brähler E, Hrsg. Diagnostische Verfahren zu Lebensqualität und Wohlbefinden. Göttingen: Hogrefe; 2003: 184-188
    Search in Google Scholar
  • 49 Ravens-Sieberer U, Heilmann M, Walleser S. Assessment of quality of life in young children with a Computer Assisted Touch Screen Program (CAT-Screen) – reliability, validity and feasibility. 7th Annual Conference of the International Society for Quality of Life Research (ISOQOL). Quality of Life Research 2000; 298
    PubMedSearch in Google Scholar
  • 50 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
    CrossrefPubMedSearch in Google Scholar
  • 51 Bullinger M, Brutt AL, Erhart M et al. Psychometric properties of the KINDL-R questionnaire: results of the BELLA study. Eur Child Adolesc Psychiatry 2008; 17 (Suppl. 01) 125-132
    CrossrefPubMedSearch in Google Scholar
  • 52 Ravens-Sieberer U, Ellert U, Erhart M. [Health-related quality of life of children and adolescents in Germany. Norm data from the German Health Interview and Examination Survey (KiGGS)]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2007; 50: 810-818
    CrossrefPubMedSearch in Google Scholar
  • 53 Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999; 37: 126-139
    CrossrefPubMedSearch in Google Scholar
  • 54 Varni J, Limbers C, Neighbors K et al. The PedsQL™ Infant Scales: feasibility, internal consistency reliability, and validity in healthy and ill infants. Quality of Life Research 2011; 20: 45-55
    CrossrefPubMedSearch in Google Scholar
  • 55 Varni JW, Burwinkle TM, Seid M. The PedsQL 4.0 as a school population health measure: feasibility, reliability, and validity. Qual Life Res 2006; 15: 203-215
    CrossrefPubMedSearch in Google Scholar
  • 56 Varni JW, Limbers CA, Neighbors K et al. The PedsQL(TM) Infant Scales: feasibility, internal consistency reliability, and validity in healthy and ill infants. Quality of Life Research 2011; 20: 45-55
    CrossrefPubMedSearch in Google Scholar
  • 57 Ravens-Sieberer U, Erhart M, Rajmil L et al. Reliability, construct and criterion validity of the KIDSCREEN-10 score: a short measure for children and adolescents’ well-being and health-related quality of life. Qual Life Res 2010; 19: 1487-1500
    CrossrefPubMedSearch in Google Scholar
  • 58 Ravens-Sieberer U, Gosch A, Rajmil L et al. The KIDSCREEN-52 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Value Health 2008; 11: 645-658
    CrossrefPubMedSearch in Google Scholar
  • 59 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: 1065-1077
    CrossrefPubMedSearch in Google Scholar
  • 60 Baars RM, Atherton CI, Koopman HM et al. The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents. Health Qual Life Outcomes 2005; 3: 70
    CrossrefPubMedSearch in Google Scholar
  • 61 Simeoni M-C, Schmidt S, Muehlan H et al. Field testing of a European quality of life instrument for children and adolescents with chronic conditions: the 37-item DISABKIDS Chronic Generic Module. Quality of Life Research 2007; 16: 881-893
    CrossrefPubMedSearch in Google Scholar
  • 62 Schmidt S, Debensason D, Mühlan H et al. The DISABKIDS generic quality of life instrument showed cross-cultural validity. Journal of Clinical Epidemiology 2006; 59: 587-598
    CrossrefPubMedSearch in Google Scholar
  • 63 Mattejat F, Remschmidt H. ILK Inventar zur Erfassung der Lebensqualität bei Kindern und Jugendlichen. Ratingbogen für Kinder, Jugendliche und Eltern. Bern: Verlag Hans Huber; 2006
    Search in Google Scholar
  • 64 Horsman J, Furlong W, Feeny D et al. The Health Utilities Index (HUI): concepts, measurement properties and applications. Health Qual Life Outcomes 2003; 1: 54
    CrossrefPubMedSearch in Google Scholar
  • 65 Wille N, Badia X, Bonsel G et al. Development of the EQ-5D-Y: a child-friendly version of the EQ-5D. Qual Life Res 2010; 19: 875-886
    CrossrefPubMedSearch in Google Scholar
  • 66 The EuroQol Group. EuroQol-a new facility for the measurement of health-related quality of life. Health Policy 1990; 16: 199-208
    CrossrefPubMedSearch in Google Scholar
  • 67 Ravens-Sieberer U, Wille N, Badia X et al. Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Quality of Life Research 2010; 19: 887-897
    CrossrefPubMedSearch in Google Scholar
  • 68 von Mackensen S, Bullinger M. Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL). Haemophilia 2004; 10 (Suppl. 01) 17-25
    PubMedSearch in Google Scholar
  • 69 Pollak E, Muhlan H, VON Mackensen S et al. The Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia. Haemophilia 2006; 12: 384-392
    CrossrefPubMedSearch in Google Scholar
  • 70 The QoLISSY Study Group. The QoLISSY Questionnaire – User Manual. Lengerich: Pabst Verlag; 2013
    Search in Google Scholar
  • 71 Feeny D, Furlong W, Barr RD. Multiattribute approach to the assessment of health-related quality of life: Health Utilities Index. Med Pediatr Oncol 1998; (Suppl. 01) 54-59
    PubMedSearch in Google Scholar