Skip to main content
Erschienen in: Quality of Life Research 3/2014

01.04.2014 | Review

A review of patient-reported outcomes for children and adolescents with obesity

verfasst von: Bani Ahuja, Anne F. Klassen, Randi Satz, Nikita Malhotra, Elena Tsangaris, Matthew Ventresca, Nora Fayed

Erschienen in: Quality of Life Research | Ausgabe 3/2014

Einloggen

Aktivieren Sie unsere intelligente Suche, um passende Fachinhalte oder Patente zu finden.

search-config
loading …

Abstract

Introduction

Obesity is a chronic condition that can impact the physical, emotional, mental and social elements that encompass a child’s life. The objectives of this study were to identify which generic and obesity-specific patient-reported outcome (PRO) instruments are used in obesity literature, as well as review their conceptual approach, health and health-related content, ethical content and psychometric properties.

Method

PubMed, CINAHL, EMBASE and PsycINFO were searched from the inception of each database to May 2012 to identify all studies using multi-dimensional PRO instruments with children who are overweight or obese. The most common generic and all obesity-specific instruments were analyzed according to the study objectives.

Results

From 4,226 articles identified by our search, 70 articles used 6 generic and 4 obesity-specific PRO instruments. While the most commonly used PRO instrument was the generic PedsQL 4.0 (used in 53 studies), many health domains were found in the obesity-specific instruments that are not measured by the PedsQL 4.0. Summary of the development and psychometric properties of the generic and obesity PROs identified that no one instrument meets all the guideline criteria for instrument development and validation, e.g., only one instrument included qualitative input from children with obesity in the content development phase.

Discussion

This comprehensive review provides information to aid in selecting multi-dimensional PRO instruments in children with obesity according to various aspects of content as well as psychometric properties. The conceptual analysis shows that the reviewed PRO instruments contain inconsistencies in their conceptual approaches. Also, certain relevant health domains to children and youth with obesity were not included in the most commonly used generic instrument. The obesity-specific instruments require further validation before they can be used in intervention studies.

Sie haben noch keine Lizenz? Dann Informieren Sie sich jetzt über unsere Produkte:

Springer Professional "Wirtschaft+Technik"

Online-Abonnement

Mit Springer Professional "Wirtschaft+Technik" erhalten Sie Zugriff auf:

  • über 102.000 Bücher
  • über 537 Zeitschriften

aus folgenden Fachgebieten:

  • Automobil + Motoren
  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Elektrotechnik + Elektronik
  • Energie + Nachhaltigkeit
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Maschinenbau + Werkstoffe
  • Versicherung + Risiko

Jetzt Wissensvorsprung sichern!

Springer Professional "Wirtschaft"

Online-Abonnement

Mit Springer Professional "Wirtschaft" erhalten Sie Zugriff auf:

  • über 67.000 Bücher
  • über 340 Zeitschriften

aus folgenden Fachgebieten:

  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Versicherung + Risiko




Jetzt Wissensvorsprung sichern!

Literatur
2.
Zurück zum Zitat Fayed, N., Schiariti, V., Bostan, C., Cieza, A., & Klassen, A. (2011). Health status and QOL instruments used in childhood cancer research: Deciphering conceptual content using World Health Organization definitions. Quality of Life Research, 20(8), 1247–1258.PubMedCrossRef Fayed, N., Schiariti, V., Bostan, C., Cieza, A., & Klassen, A. (2011). Health status and QOL instruments used in childhood cancer research: Deciphering conceptual content using World Health Organization definitions. Quality of Life Research, 20(8), 1247–1258.PubMedCrossRef
3.
Zurück zum Zitat Fayed, N., De Camargo, O. K., Kerr, E., Rosenbaum, P., et al. (2012). Generic patient-reported outcomes in child health research: A review of conceptual content using World Health Organization definitions. Developmental Medicine and Child Neurology, 54(12), 1085–1095.PubMedCrossRef Fayed, N., De Camargo, O. K., Kerr, E., Rosenbaum, P., et al. (2012). Generic patient-reported outcomes in child health research: A review of conceptual content using World Health Organization definitions. Developmental Medicine and Child Neurology, 54(12), 1085–1095.PubMedCrossRef
4.
Zurück zum Zitat Williams, J., Wake, M., Hesketh, K., Maher, E., & Waters, E. (2005). Health-related quality of life of overweight and obese children. The Journal of the American Medical Association, 293(1), 70–76.CrossRef Williams, J., Wake, M., Hesketh, K., Maher, E., & Waters, E. (2005). Health-related quality of life of overweight and obese children. The Journal of the American Medical Association, 293(1), 70–76.CrossRef
5.
Zurück zum Zitat World Health Organization. (1998). WHOQOL user manual. Geneva: World Health Organization. World Health Organization. (1998). WHOQOL user manual. Geneva: World Health Organization.
6.
Zurück zum Zitat Fayed, N., & Kerr, E. N. (2009). Comparing quality of life scales in childhood epilepsy: What’s in the measures? International Journal of Disability, Community & Rehabilitation, 8(3), 1–13. Fayed, N., & Kerr, E. N. (2009). Comparing quality of life scales in childhood epilepsy: What’s in the measures? International Journal of Disability, Community & Rehabilitation, 8(3), 1–13.
7.
Zurück zum Zitat Schiariti, V., Fayed, N., Cieza, A., Klassen, A., et al. (2011). Content comparison of health-related quality of life measures for cerebral palsy based on the international classification of functioning. Disability and Rehabilitation, 33(15–16), 1330–1339.PubMedCrossRef Schiariti, V., Fayed, N., Cieza, A., Klassen, A., et al. (2011). Content comparison of health-related quality of life measures for cerebral palsy based on the international classification of functioning. Disability and Rehabilitation, 33(15–16), 1330–1339.PubMedCrossRef
9.
Zurück zum Zitat Heritage, J. (2002). The limits of questioning: Negative interrogatives and hostile question content. Journal of Pragmatics, 34(10–11), 1427–1446.CrossRef Heritage, J. (2002). The limits of questioning: Negative interrogatives and hostile question content. Journal of Pragmatics, 34(10–11), 1427–1446.CrossRef
10.
Zurück zum Zitat Schwarz, N. (1999). Self-reports: How the questions shape the answers. American Psychologist, 54(2), 93–105.CrossRef Schwarz, N. (1999). Self-reports: How the questions shape the answers. American Psychologist, 54(2), 93–105.CrossRef
11.
Zurück zum Zitat Ronen, G. M., Fayed, N., & Rosenbaum, P. L. (2011). Outcomes in pediatric neurology: A review of conceptual issues and recommendations The 2010 Ronnie Mac Keith lecture. Developmental Medicine and Child Neurology, 53(4), 305–312.PubMedCrossRef Ronen, G. M., Fayed, N., & Rosenbaum, P. L. (2011). Outcomes in pediatric neurology: A review of conceptual issues and recommendations The 2010 Ronnie Mac Keith lecture. Developmental Medicine and Child Neurology, 53(4), 305–312.PubMedCrossRef
12.
Zurück zum Zitat Davis, E. (2006). Paediatric quality of life instruments: A review of the impact of the conceptual framework on outcomes. Developmental Medicine and Child Neurology, 48(04), 311–318.PubMedCrossRef Davis, E. (2006). Paediatric quality of life instruments: A review of the impact of the conceptual framework on outcomes. Developmental Medicine and Child Neurology, 48(04), 311–318.PubMedCrossRef
13.
Zurück zum Zitat De Civita, M. (2005). Evaluating health-related quality-of-life studies in paediatric populations: Some conceptual, methodological and developmental considerations and recent applications. PharmacoEconomics, 23(7), 659–685.PubMedCrossRef De Civita, M. (2005). Evaluating health-related quality-of-life studies in paediatric populations: Some conceptual, methodological and developmental considerations and recent applications. PharmacoEconomics, 23(7), 659–685.PubMedCrossRef
14.
Zurück zum Zitat Ravens-Sieberer, U., Erhart, M., Wille, N., Wetzel, R., Nickel, J., & Bullinger, M. (2006). Generic health-related quality-of-life assessment in children and adolescents: Methodological considerations. PharmacoEconomics, 24(12), 1199–1220.PubMedCrossRef Ravens-Sieberer, U., Erhart, M., Wille, N., Wetzel, R., Nickel, J., & Bullinger, M. (2006). Generic health-related quality-of-life assessment in children and adolescents: Methodological considerations. PharmacoEconomics, 24(12), 1199–1220.PubMedCrossRef
15.
Zurück zum Zitat Clarke, S., & Eiser, C. (2004). The measurement of health-related quality of life (QOL) in paediatric clinical trials: A systematic review. Health and Quality of Life Outcomes, 2, 66.PubMedCentralPubMedCrossRef Clarke, S., & Eiser, C. (2004). The measurement of health-related quality of life (QOL) in paediatric clinical trials: A systematic review. Health and Quality of Life Outcomes, 2, 66.PubMedCentralPubMedCrossRef
16.
Zurück zum Zitat Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood, 84(3), 205–211.PubMedCentralPubMedCrossRef Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood, 84(3), 205–211.PubMedCentralPubMedCrossRef
17.
Zurück zum Zitat Harding, L. (2001). Children’s quality of life assessments: A review of generic and health related quality of life measures completed by children and adolescents. Clinical Psychology & Psychotherapy, 8(2), 79–96.CrossRef Harding, L. (2001). Children’s quality of life assessments: A review of generic and health related quality of life measures completed by children and adolescents. Clinical Psychology & Psychotherapy, 8(2), 79–96.CrossRef
18.
Zurück zum Zitat Matza, L. S., Swenson, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in health, 7(1), 79–92.PubMedCrossRef Matza, L. S., Swenson, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in health, 7(1), 79–92.PubMedCrossRef
19.
Zurück zum Zitat Solans, M., Pane, S., Estrada, M. D., Serra-Sutton, V., Berra, S., Herdman, M., et al. (2008). Health-related quality of life measurement in children and adolescents: A systematic review of generic and disease-specific instruments. Value in health, 11(4), 742–764.PubMedCrossRef Solans, M., Pane, S., Estrada, M. D., Serra-Sutton, V., Berra, S., Herdman, M., et al. (2008). Health-related quality of life measurement in children and adolescents: A systematic review of generic and disease-specific instruments. Value in health, 11(4), 742–764.PubMedCrossRef
20.
Zurück zum Zitat Rajmil, L., Herdman, M., Fernandez de Sanmamed, M. J., Detmar, S., Bruil, J., Ravens-Sieberer, U., et al. (2004). Generic health-related quality of life instruments in children and adolescents: A qualitative analysis of content. Journal of Adolescent Health, 34(1), 37–45.PubMedCrossRef Rajmil, L., Herdman, M., Fernandez de Sanmamed, M. J., Detmar, S., Bruil, J., Ravens-Sieberer, U., et al. (2004). Generic health-related quality of life instruments in children and adolescents: A qualitative analysis of content. Journal of Adolescent Health, 34(1), 37–45.PubMedCrossRef
21.
Zurück zum Zitat Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York: McGraw-Hill. Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York: McGraw-Hill.
22.
Zurück zum Zitat Giraudeau, B., & Mary, J. Y. (2001). Planning a reproducibility study: How many subjects and how many replicates per subject for an expected width of the 95 per cent confidence interval of the intraclass correlation coefficient. Statistics in Medicine, 20(21), 3205–3214.PubMedCrossRef Giraudeau, B., & Mary, J. Y. (2001). Planning a reproducibility study: How many subjects and how many replicates per subject for an expected width of the 95 per cent confidence interval of the intraclass correlation coefficient. Statistics in Medicine, 20(21), 3205–3214.PubMedCrossRef
23.
Zurück zum Zitat Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J. L., & Friedman-Bender, A. (1998). The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer, 82(6), 1184–1196.PubMedCrossRef Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J. L., & Friedman-Bender, A. (1998). The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer, 82(6), 1184–1196.PubMedCrossRef
24.
Zurück zum Zitat Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J. L., Friedman-Bender, A., et al. (1998). The pediatric cancer quality of life inventory (PCQL): I. Instrument development, descriptive statistics, and cross-informant variance. Journal of Behavioral Medicine, 21(2), 179–204.PubMedCrossRef Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J. L., Friedman-Bender, A., et al. (1998). The pediatric cancer quality of life inventory (PCQL): I. Instrument development, descriptive statistics, and cross-informant variance. Journal of Behavioral Medicine, 21(2), 179–204.PubMedCrossRef
25.
Zurück zum Zitat Varni, J. W., Rode, C. A., Seid, M., Katz, E. R., Friedman-Bender, A., & Quiggins, D. J. L. (1999). The pediatric cancer quality of life inventory-32 (PCQL-32): II. Feasibility and range of measurement. Journal of Behavioral Medicine, 22, 397–406.PubMedCrossRef Varni, J. W., Rode, C. A., Seid, M., Katz, E. R., Friedman-Bender, A., & Quiggins, D. J. L. (1999). The pediatric cancer quality of life inventory-32 (PCQL-32): II. Feasibility and range of measurement. Journal of Behavioral Medicine, 22, 397–406.PubMedCrossRef
27.
Zurück zum Zitat Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.PubMedCrossRef Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.PubMedCrossRef
28.
Zurück zum Zitat Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3(6), 329–341.PubMedCrossRef Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3(6), 329–341.PubMedCrossRef
29.
Zurück zum Zitat Kolotkin, R. L., Head, S., & Brookhart, A. (1997). Construct validity of the impact of weight on quality of life questionnaire. Obesity Research, 5(5), 434–441.PubMedCrossRef Kolotkin, R. L., Head, S., & Brookhart, A. (1997). Construct validity of the impact of weight on quality of life questionnaire. Obesity Research, 5(5), 434–441.PubMedCrossRef
30.
Zurück zum Zitat Kolotkin, R. L., Head, S., Hamilton, M., & Tse, C. K. (1995). Assessing impact of weight on quality of life. Obesity Research, 3(1), 49–56.PubMedCrossRef Kolotkin, R. L., Head, S., Hamilton, M., & Tse, C. K. (1995). Assessing impact of weight on quality of life. Obesity Research, 3(1), 49–56.PubMedCrossRef
31.
Zurück zum Zitat Kolotkin, R. L., & Crosby, R. D. (2002). Psychometric evaluation of the impact of weight on quality of life-lite questionnaire (IWQOL-lite) in a community sample. Quality of Life Research, 11(2), 157–171.PubMedCrossRef Kolotkin, R. L., & Crosby, R. D. (2002). Psychometric evaluation of the impact of weight on quality of life-lite questionnaire (IWQOL-lite) in a community sample. Quality of Life Research, 11(2), 157–171.PubMedCrossRef
32.
Zurück zum Zitat Kolotkin, R. L., Crosby, R. D., Kosloski, K. D., & Williams, G. R. (2001). Development of a brief measure to assess quality of life in obesity. Obesity Research, 9(20), 102–111.PubMedCrossRef Kolotkin, R. L., Crosby, R. D., Kosloski, K. D., & Williams, G. R. (2001). Development of a brief measure to assess quality of life in obesity. Obesity Research, 9(20), 102–111.PubMedCrossRef
33.
Zurück zum Zitat Modi, A. C., & Zeller, M. H. (2011). The IWQOL-Kids(©): establishing minimal clinically important difference scores and test-retest reliability. International Journal of Paediatric Obesity, 6(2–2), 94–96.CrossRef Modi, A. C., & Zeller, M. H. (2011). The IWQOL-Kids(©): establishing minimal clinically important difference scores and test-retest reliability. International Journal of Paediatric Obesity, 6(2–2), 94–96.CrossRef
34.
Zurück zum Zitat Nadeau, K., Kolotkin, R. L., Boex, R., Witten, T., McFann, K. K., Zeitler, P., et al. (2011). Health-related quality of life in adolescents with comorbidities related to obesity. Journal of Adolescent Health, 49(1), 90–92.PubMedCrossRef Nadeau, K., Kolotkin, R. L., Boex, R., Witten, T., McFann, K. K., Zeitler, P., et al. (2011). Health-related quality of life in adolescents with comorbidities related to obesity. Journal of Adolescent Health, 49(1), 90–92.PubMedCrossRef
35.
Zurück zum Zitat Zeller, M. H., & Modi, A. C. (2009). Development and initial validation of an obesity-specific quality-of-life measure for children: Sizing me up. Obesity, 17(6), 1171–1177.PubMedCentralPubMed Zeller, M. H., & Modi, A. C. (2009). Development and initial validation of an obesity-specific quality-of-life measure for children: Sizing me up. Obesity, 17(6), 1171–1177.PubMedCentralPubMed
36.
Zurück zum Zitat Modi, A. C., & Zeller, M. H. (2008). Validation of a parent-proxy, obesity-specific quality-of-life measure: Sizing them up. Obesity, 16(12), 2624–2633.PubMedCentralPubMedCrossRef Modi, A. C., & Zeller, M. H. (2008). Validation of a parent-proxy, obesity-specific quality-of-life measure: Sizing them up. Obesity, 16(12), 2624–2633.PubMedCentralPubMedCrossRef
37.
Zurück zum Zitat Ravens-Sieberer, U., Bullinger M. (2000). KINDLER questionnaire for measuring health-related quality of life in children and adolescents revised version manual. Ravens-Sieberer, U., Bullinger M. (2000). KINDLER questionnaire for measuring health-related quality of life in children and adolescents revised version manual.
38.
Zurück zum Zitat Ravens-Sieberer, U., & Bullinger, M. (1998). Assessing health-related quality of life in chronically ill children with the German KINDL: First psychometric and content analytical results. Quality of Life Research, 7(5), 399–407.PubMedCrossRef Ravens-Sieberer, U., & Bullinger, M. (1998). Assessing health-related quality of life in chronically ill children with the German KINDL: First psychometric and content analytical results. Quality of Life Research, 7(5), 399–407.PubMedCrossRef
39.
Zurück zum Zitat Wille, N., Bullinger, M., Holl, R., Hoffmeister, U., Mann, R., Goldapp, C., et al. (2010). Health-related quality of life in overweight and obese youths: Results of a multicenter study. Health and Quality of Life Outcomes, 8, 36.PubMedCentralPubMedCrossRef Wille, N., Bullinger, M., Holl, R., Hoffmeister, U., Mann, R., Goldapp, C., et al. (2010). Health-related quality of life in overweight and obese youths: Results of a multicenter study. Health and Quality of Life Outcomes, 8, 36.PubMedCentralPubMedCrossRef
40.
Zurück zum Zitat Morales, L. S., Edwards, T. C., Flores, Y., Barr, L., & Patrick, D. L. (2011). Measurement properties of a multicultural weight-specific quality-of-life instrument for children and adolescents. Quality of Life Research, 20(2), 215–224.PubMedCentralPubMedCrossRef Morales, L. S., Edwards, T. C., Flores, Y., Barr, L., & Patrick, D. L. (2011). Measurement properties of a multicultural weight-specific quality-of-life instrument for children and adolescents. Quality of Life Research, 20(2), 215–224.PubMedCentralPubMedCrossRef
41.
Zurück zum Zitat Patrick, D.L., Edwards, T.C., Skalicky, A. (2010). Youth quality of life instrument-weight module (YQOL-W). User manual and interpretation guide & scoring programs. (1st Ed.). Seattle, Washington. Patrick, D.L., Edwards, T.C., Skalicky, A. (2010). Youth quality of life instrument-weight module (YQOL-W). User manual and interpretation guide & scoring programs. (1st Ed.). Seattle, Washington.
42.
Zurück zum Zitat WHOQOL Group. (1994). The development of the world health organization quality of life assessment instrument (WHOQOL). In W. Kuyken & J. Orley (Eds.), Quality of life assessment: International perspectives (pp. 41–57). Berlin: Springer.CrossRef WHOQOL Group. (1994). The development of the world health organization quality of life assessment instrument (WHOQOL). In W. Kuyken & J. Orley (Eds.), Quality of life assessment: International perspectives (pp. 41–57). Berlin: Springer.CrossRef
43.
Zurück zum Zitat Fayed, N. (2011). Content issues in child health status and quality of life instruments: Addressing the challenges with new methods (Doctor of Philosophy, McMaster University). Open Access Dissertations and Theses Paper, 6066. Fayed, N. (2011). Content issues in child health status and quality of life instruments: Addressing the challenges with new methods (Doctor of Philosophy, McMaster University). Open Access Dissertations and Theses Paper, 6066.
44.
Zurück zum Zitat Colver, A. (2012). Quality of life. In A. Majnemer (Ed.), Measures for children with developmental disability framed by the ICF-CY (1st ed.). Cambridge: Mac Keith Press. Colver, A. (2012). Quality of life. In A. Majnemer (Ed.), Measures for children with developmental disability framed by the ICF-CY (1st ed.). Cambridge: Mac Keith Press.
45.
Zurück zum Zitat Wright, V. et al. (under-review). Parent’s thoughts on the PEDI, Developmental Medicine Child Neurology. Wright, V. et al. (under-review). Parent’s thoughts on the PEDI, Developmental Medicine Child Neurology.
Metadaten
Titel
A review of patient-reported outcomes for children and adolescents with obesity
verfasst von
Bani Ahuja
Anne F. Klassen
Randi Satz
Nikita Malhotra
Elena Tsangaris
Matthew Ventresca
Nora Fayed
Publikationsdatum
01.04.2014
Verlag
Springer International Publishing
Erschienen in
Quality of Life Research / Ausgabe 3/2014
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-013-0459-9

Weitere Artikel der Ausgabe 3/2014

Quality of Life Research 3/2014 Zur Ausgabe

Premium Partner