Download PDF
Gesundheitsökonomie & Qualitätsmanagement 2018; 23(04): 212-229
DOI: 10.1055/s-0043-118105
Originalarbeit
Georg Thieme Verlag KG Stuttgart · New York

Instrumente zur Messung der gesundheitsbezogenen Lebensqualität bei Kindern und Jugendlichen mit chronisch-entzündlichen Darmerkrankungen – Systematisches Review und qualitative Analyse

Instruments to measure health-related quality of life in children and adolescents with inflammatory bowel disease – systematic review and qualitative analysis
Eva Räcker
,
Simone Kreimeier
,
Greiner Wolfgang
Further Information

Publication History

Publication Date:
07 September 2017 (online)

Also available at
    Permissions and Reprints

Zusammenfassung

Zielsetzung Da die Erstmanifestation von chronisch-entzündlichen Darmerkrankungen (CED) nicht selten im Kindes- und Jugendalter liegt und die Erkrankung das gesamte Lebensumfeld der Patienten beeinflusst, ist die Erfassung der gesundheitsbezogenen Lebensqualität (HRQoL) bei Kindern und Jugendlichen mit CED von besonderer Relevanz. Ziel dieser Arbeit war es zu untersuchen, welche Instrumente bislang zur Messung der selbstberichteten HRQoL bei der Zielgruppe verwendet werden sowie die beiden Messinstrumente EQ-5D-Youth (EQ-5D-Y) und IMPACT-III auf ihre methodische Adäquatheit hin zu überprüfen.

Methode Zunächst wurden mittels systematischer Literaturrecherche (Februar 2016) die seit 2010 publizierten, relevanten Studien bezogen auf die Fragestellung identifiziert und anschließend gesichtet. Bei der Prüfung der Messinstrumente EQ-5D-Y und IMPACT-III kamen qualitätsbewertende Kriterien (z. B. Validität, Akzeptanz), die spezifisch für patientenberichtete Outcomes entwickelt wurden, sowie leitfadengestützte Experteninterviews mit zwei Kindergastroenterologen zum Einsatz, um Stärken und Schwächen aus praktischer Perspektive zu beleuchten.

Ergebnisse Insgesamt wurden 18 Studien in die systematische Übersichtsarbeit eingeschlossen. Dabei wurden verschiedene generische Instrumente (KINDLR, KIDSCREEN-10, KIDSCREEN-27, PedsQLTM 4.0, 15D/16D/17D, CHQ-CF87 und EQ-5D) zur Messung der selbstberichteten HRQoL von Kindern und Jugendlichen mit CED identifiziert, aber nur zwei krankheitsspezifische Instrumente (IMPACT-III, SHS). Die detaillierte Betrachtung des EQ-5D-Y und des IMPACT-III ergab sowohl basierend auf den Qualitätskriterien als auch unter Einbezug der Expertensicht, dass beide Instrumente grundsätzlich zur Erfassung der HRQoL von jungen CED-Patienten geeignet sind, allerdings jeweils spezifische Optimierungspotenziale aufweisen.

Schlussfolgerungen Obwohl der EQ-5D-Y bisher nicht bei Kindern und Jugendlichen mit CED angewendet wurde, liegen erste Hinweise vor, dass das Instrument zur Erfassung der HRQoL bei der Zielgruppe geeignet ist. Der IMPACT-III als krankheitsspezifisches Instrument ist offenbar besonders geeignet zur Messung der HRQoL der Zielgruppe, was sich auch durch den fast standardmäßigen Einsatz zeigt. Dennoch weist er – insbesondere durch seine Länge – eine Schwäche auf und seine Eignung sollte, vor allem im Vergleich zu dem neuen krankheitsspezifischen Instrument Short Health Scale (SHS), genauer untersucht werden.

Abstract

Aim The initial manifestation of inflammatory bowel diseases (IBD) often occurs in childhood and adolescence. As the disease affects the whole life and environment of patients, the measurement of health-related quality of life (HRQoL) in children and adolescents with IBD is of particular relevance. The aim of this paper was to analyse which instruments are used to measure self-reported HRQoL in the target group so far. Moreover, the instruments EQ-5D-Youth (EQ-5D-Y) and IMPACT-III were tested for their methodological adequacy in measuring HRQoL in young IBD-patients.

Method A systematic review was performed (February 2016) to identify studies gathering the self-reported HRQoL of young IBD-patients and the respective instruments that were published since 2010. The examination of the EQ-5D-Y and the IMPACT-III was based on criteria for quality assessment (e. g. validity, acceptance) of patient-reported outcome measures and expert interviews with two pediatric gastroenterologists to highlight strengths and weaknesses in practical implementation.

Results Overall, 18 studies were included in the systematic review. Thereby, different generic instruments (KINDLR, KIDSCREEN-10, KIDSCREEN-27, PedsQLTM 4.0, 15D/16D/17D, CHQ-CF87 and EQ-5D) for the measurement of self-reported HRQoL in children and adolescents with IBD were identified. On the contrary, only two disease specific instruments (IMPACT-III, SHS) emerged from the literature review. Based on the quality criteria and the experts’ views, the detailed analysis of the EQ-5D-Y as well as the IMPACT-III showed that both instruments are suitable to assess HRQoL of young IBD-patients. However, both questionnaires revealed a potential for optimisation.

Discussion Despite the fact that the EQ-5D-Y was not used to measure HRQoL in children and adolescents with IBD yet, the instrument might be appropriate in assessing HRQoL in the target group. The IMPACT-III, as a disease specific instrument, seems to be most suitable to measure the HRQoL in the IBD population. That is also reinforced by the routine use of this instrument. However, the length of the IMPACT-III is a major shortcoming which perhaps indicates a further need for research, also in comparison to the new disease specific instrument Short Health Scale (SHS).

Schlüsselwörter

Gesundheitsbezogene Lebensqualität - Chronisch-entzündliche Darmerkrankungen - Kinder und Jugendliche - Messinstrumente

Keywords

health-related quality of life - inflammatory bowel disease - children and adolescents - measuring instrument
 

  • Literatur

  • 1 Bullinger M. Methoden zur Lebensqualitätsbewertung in der Onkologie. In: Schmoll HJ, Höffken K, Possinger K. (Eds) Kompendium Internistische Onkologie. Berlin Heidelberg New York: Springer; 1996: 1339-1351
    Google Scholar
  • 2 Greiner W, Klose K. Lebensqualitätsbewertung und Utilities in der Gesundheitsökonomie. Z Evid Fortbild Qual Gesundhwes 2014; 108: 120-125
    CrossrefPubMedGoogle Scholar
  • 3 Baumgart DC, Carding SR. Inflammatory bowel disease: cause and immunbiology. The Lancet 2007; 369: 1627-1640
    CrossrefPubMedGoogle Scholar
  • 4 Dubinsky M. Special issues in pediatric inflammatory bowel disease. World J Gastroenterol 2008; 14: 413-420
    PubMedGoogle Scholar
  • 5 Buderus S, Scholz D, Behrens R. et al. Inflammatory Bowel Disease in Pediatric Patients: Characteristics of Newly Diagnosed Patients From the CEDATA-GPGE Registry. Deutsches Ärzteblatt 2015; 112: 121-127
    PubMedGoogle Scholar
  • 6 Stallmach A, Häuser W, L’hoest H. et al. Die chronisch entzündlichen Darmerkrankungen Morbus Crohn und Colitis ulcerosa: Herausforderung an die Versorgung. In: Repschläger U, Schulte C, Osterkamp N. (Eds) BARMER GEK Gesundheitswesen aktuell 2012. BARMER GEK; 2012: 286-309
    Google Scholar
  • 7 Behrens R. Chronisch entzündliche Darmerkrankungen im Kinders- und Jugendalter. 2, vollständig aktualisierte Auflage. Bremen: UNI-MED; 2006
    Google Scholar
  • 8 Reichert AJ. Schmerzen und Lebensqualität bei Patienten mit chronisch entzündlichen Darmerkrankungen. 2009 http://www.diss.fu-berlin.de/diss/servlets/MCRFileNodeServlet/FUDISS_derivate_000000004694/Doktorarbeit_19.11.08_ohne_Lebenslauf.pdf?hosts (Zugegriffen: 21.03.2016)
    PubMedGoogle Scholar
  • 9 von Reenen M, Janssen B, Oppe M. et al. EQ-5D-Y User Guide: Basic information on how to use the EQ-5D-Y instrument, EuroQoL Group. Rotterdam: 2014
    Google Scholar
  • 10 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
    CrossrefPubMedGoogle Scholar
  • 11 Kohlmann T. Messung von Lebensqualität: So einfach wie möglich, so differenziert wie nötig. Z Evid Fortbild Qual Gesundhwes 2014; 108: 104-110
    CrossrefPubMedGoogle Scholar
  • 12 Fitzpatrick R, Davey C, Buxton MJ. et al. Criteria for Assessing Patient Based Outcome Measures for Use in Clinical Trials. In: Stevens A, Abrams K, Brazier J. (Eds), et al. The Advanced Handbook of Methods in Evidence Based Healthcare. London Thousand Oaks New Delhi: SAGE Publications; 2001: 181-194
    CrossrefGoogle Scholar
  • 13 Mayring P. Qualitative Inhaltsanalyse: Grundlagen und Techniken. Weinheim Basel: Beltz Verlag; 2010
    Google Scholar
  • 14 Ravens-Sieberer U, Klasen F, Bichmann H. et al. Erfassung der gesundheitsbezogenen Lebensqualität von Kindern und Jugendlichen. Das Gesundheitswesen 2013; 75: 667-678
    Article in Thieme ConnectPubMedGoogle Scholar
  • 15 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
    CrossrefPubMedGoogle Scholar
  • 16 Werner H, Landolt MA, Buehr P. et al. The Swiss IBD Cohort Study Group. Validation of the IMPACT-III quality of life questionnaire in Swiss children with inflammatory bowel disease. J Crohns Colitis 2014; 8: 641-648
    CrossrefPubMedGoogle Scholar
  • 17 Otley A. Measurement of Quality of Life in Pediatric Inflammatory Bowel Disease. In: Mamula P, Markowitz JE, Baldassano RD. (Eds) Pediatric Inflammatory Bowel Disease. New York: Springer Science + Business Media; 2008: 565-580
    CrossrefGoogle Scholar
  • 18 Abdovic S, Pavic AM, Milosevic M. et al. Short Health Scale: A Valid, Reliable, and Responsive Measure of Health-related Quality of Life in Children with Inflammatory Bowel Disease. Inflamm Bowel Dis 2015; 21: 818-823
    CrossrefPubMedGoogle Scholar
  • 19 König HH, Ulshöfer A, Gregor M. et al. Validation of the EuroQoL questionnaire in patients with inflammatory bowel disease. Eur J Gastroenterol Hepatol 2002; 14: 1205-1215
    CrossrefPubMedGoogle Scholar
  • 20 Ravens-Sieberer U, Wille N, Badia X. et al. Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Qual Life Res 2010; 19: 887-897
    CrossrefPubMedGoogle Scholar
  • 21 Ogden CA, Akobeng AK, Abbott J. et al. Validation of an Instrument to Measure Quality of Life in British Children With Inflammatory Bowel Disease. J Pediatr Gastroenterol Nutr 2011; 53: 280-286
    CrossrefPubMedGoogle Scholar
  • 22 Abdovic S, Pavic AM, Milosevic M. et al. The IMPACT-III (HR) questionnaire: a valid measure of health-related quality of life in Croatian children with inflammatory bowel disease. J Crohns Colitis 2013; 7: 908-915
    CrossrefPubMedGoogle Scholar
  • 23 Otley A, Xu S, Yan S. et al. REACH Study Group. IMPACT-III Is a Valid, Reliable and Responsive Measure of Health-Related Quality of Life in Pediatric’s Crohn’s Disease. J Pediatr Gastroenterol Nutr. 2006 43. Supplement 2
    PubMedGoogle Scholar
  • 24 Griffiths AM, Nicholas D, Smith C. et al. Development of a Quality-of-Life Index for Pediatric Inflammatory Bowel Disease: Dealing with Differences Related to Age and IBD Type. J Pediatr Gastroenterol Nutr 1999; 28: 46-52
    CrossrefPubMedGoogle Scholar
  • 25 Canaway AG, Frew EJ. Measuring preference-based quality of life in children aged 6–7 years: a comparison of the performance of the CHU-9D and the EQ-5D-Y – the WAVES Pilot Study. Qual Life Res 2013; 22: 173-183
    CrossrefPubMedGoogle Scholar
  • 26 Haapamäki J, Roine RP, Sintonen H. et al. Health-related quality of life in paediatric patients with inflammatory bowel disease related to disease activity. J Paediatr Child Health 2011; 47: 832-837
    CrossrefPubMedGoogle Scholar
  • 27 Greenley RN, Kunz JH, Schurman JV. et al. Abdominal Pain and Health Related Quality of Life in Pediatric Inflammatory Bowel Disease. J Pediatr Psychol 2013; 38: 63-71
    CrossrefPubMedGoogle Scholar
  • 28 Hill RJ, Lewindon PJ, Muir R. et al. Quality of Life in Children With Crohn Disease. J Pediatr Gastroenterol Nutr 2010; 51: 35-40
    CrossrefPubMedGoogle Scholar
  • 29 Mason A, Malik S, McMillan M. et al. A Prospective Longitudinal Study of Growth and Pubertal Progress in Adolescents with Inflammatory Bowel Disease. Horm Res Paediatr 2015; 83: 45-54
    PubMedGoogle Scholar
  • 30 Engelmann G, Erhard D, Petersen M. et al. Health-Related Quality of Life in Adolescents with Inflammatory Bowel Disease Depends on Disease Activity and Psychiatric Comorbidity. Child Psychiatry Hum Dev 2015; 46: 300-307
    CrossrefPubMedGoogle Scholar
  • 31 Gray WN, Boyle SL, Graef DM. et al. Health-Related Quality of Life in Youth with Crohn Disease: Role of Disease Activity and Parenting Stress. J Pediatr Gastroenterol Nutr 2015; 60 (06) 749-753
    CrossrefPubMedGoogle Scholar
  • 32 Gray WN, Denson LA, Baldassano RN. et al. Disease Activity, Behavioral Dysfunction, and Health-Related Quality of Life in Adolescents with Inflammatory Bowel Disease. Inflamm Bowel Dis 2011; 17: 1581-1586
    CrossrefPubMedGoogle Scholar
  • 33 Lowe W, Kenwright D, Wyeth J. et al. Crohn Disease: Effect on Children’s Lifestyles. J Pediatr Gastroenterol Nutr 2012; 54: 397-400
    CrossrefPubMedGoogle Scholar
  • 34 Gumidyala AP, Greenley RN. Correlates of Health-Related Quality of Life in Pediatric Inflammatory Bowel Disease: A Cumulative Risk Model Approach. J Pediatr Psychol 2014; 39: 55-64
    CrossrefPubMedGoogle Scholar
  • 35 Mackner LM, Bickmeier RM, Crandall WV. Academic Achievement, Attendance and School-Related Quality of Life in Pediatric Inflammatory Bowel Disease. J Dev Behav Pediatr 2012; 33: 106-111
    PubMedGoogle Scholar
  • 36 Kilroy S, Nolan E, Sarma KM. Quality of Life and Level of Anxiety in Youths With Inflammatory Bowel Disease in Ireland. J Pediatr Gastroenterol Nutr 2011; 5: 275-279
    PubMedGoogle Scholar
  • 37 Szigethy EM, Youk AO, Benhayon D. et al. Depression Subtypes in Pediatric Inflammatory Bowel Disease. J Pediatr Gastroenterol Nutr 2014; 58: 574-581
    CrossrefPubMedGoogle Scholar
  • 38 Werkstetter KJ, Ullrich J, Schatz SB. et al. Lean body mass, physical activity and quality of life in paediatric patients with inflammatory bowel disease and in healthy controls. J Crohns Colitis 2012; 6: 665-673
    CrossrefPubMedGoogle Scholar
  • 39 Jelenova J, Prasko J, Ociskova M. et al. Quality of life in adolescents with inflammatory bowel disease and their parents – comparison with healthy controls. Neuroendocrinol Lett 2015; 36: 787-792
    PubMedGoogle Scholar
  • 40 World Health Organization. Measurement of Quality of Life in Children – Report of a WHO/IACAPAP Working Party. Genf: World Health Organization; 1993
    Google Scholar
  • 41 Wolinsky FD, Wyrwich KW, Nienaber NA. et al. Generic versus disease-specific health status measures. Eval Health Prof 1998; 21: 216-243
    CrossrefPubMedGoogle Scholar
  • 42 Leitgeb H, Ausserhofer D, Mantovan F. Die gesundheitsbezogene Lebensqualität von Kindern und Jugendlichen mit chronisch-entzündlichen Darmerkrankungen. Kinderkrankenschwester 2010; 29: 501-508
    PubMedGoogle Scholar
  • 43 Cieza A, Stucki G. Content comparison of health-related quality of life (HRQOL) instruments based on the international classification of functioning, disability and health (ICF). Qual Lif Res 2005; 14: 1225-1237
    PubMedGoogle Scholar
  • 44 Varni JW, Seid M, Kurtin S. PedsQLTM 4.0: Reliability and Validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in Health and Patient Populations. Medical Care 2001; 39: 800-812
    CrossrefPubMedGoogle Scholar
  • 45 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
    CrossrefPubMedGoogle Scholar
  • 46 Ravens-Sieberer U, Auquier P, Erhart M. et al. The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Qual Life Res 2007; 16: 1347-1356
    CrossrefPubMedGoogle Scholar
  • 47 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
    CrossrefPubMedGoogle Scholar
  • 48 Sintonen H. The 15-D Measure of Health Related Quality of Life: Reliability, Validity and Sensitivity of its Health State Descriptive System. Centre for Health Program Evaluation 1994; Working Paper: 41
    PubMedGoogle Scholar
  • 49 Apajasalo M, Sintonen H, Holmberg C. et al. Quality of Life in early adolescene: A sixteen-dimensional health-related measure (16D). Qual Life Res 1996; 5: 205-211
    CrossrefPubMedGoogle Scholar
  • 50 Apajasalo M, Rautonen J, Holmberg C. et al. Quality of life in pre-adolescence: A 17-dimensional health-related measure (17D). Qual Life Res 1996; 5: 532-538
    CrossrefPubMedGoogle Scholar
  • 51 Landgraf JM, Abetz LN. Functional status and well-being of children representing three cultural groups: initial self-reports using the CHQ-CF87. Psychology & Health 1997; 12: 839-854
    CrossrefPubMedGoogle Scholar