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.
Similar content being viewed by others
Abbreviations
- CHQ:
-
Child Health Questionnaire
- FDH:
-
Functioning disability and health
- HRQOL:
-
Health-related quality of life
- HUI:
-
Health Utilities Index
- KINDL:
-
KINDL (registered) Quality of Life Questionnaire
- ICF-CY:
-
International Classification of Functioning, Disability, and Health Children and Youth Version
- IWQOL-Kids:
-
Impact of Weight on Quality of Life-Kids
- PEDSQL:
-
Pediatric Quality of Life Inventory
- PRO:
-
Patient-reported outcome
- QOL:
-
Quality of life
- WHO:
-
World Health Organization
- YQOL-S:
-
Youth Quality of Life-Surveillance Version
- YQOL-W:
-
Youth Quality of Life-Weight
References
World Health Organization. (2013). Childhood overweight and obesity. Resource Document. Geneva: World Health Organization. http://www.who.int/dietphysicalactivity/childhood/en/. Accessed on January 2 2013.
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.
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.
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.
World Health Organization. (1998). WHOQOL user manual. Geneva: World Health Organization.
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.
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.
U.S. Food and Drug Administration. (2009). Patient reported outcome measures: Use in medical product development to support labeling claims. Resource Document. Available at: http://www.fda.gov/downloads/Drugs/GuidancecomplianceRegulatoryinformation/guidelines/UCM193282.pdf www.fda.gov/downloads/Drugs/GuidancecomplianceRegulatoryinformation/guidelines/UCM193282.pdf. Accessed on January 2, 2013.
Heritage, J. (2002). The limits of questioning: Negative interrogatives and hostile question content. Journal of Pragmatics, 34(10–11), 1427–1446.
Schwarz, N. (1999). Self-reports: How the questions shape the answers. American Psychologist, 54(2), 93–105.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York: McGraw-Hill.
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.
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.
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.
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.
Varni, J. W. (2013). The PedsQL measurement model for the pediatric quality of life inventory. http://www.PedsQL.org/. Accessed on May 3, 2013.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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. (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.
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.
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.
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.
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.
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.
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.
Wright, V. et al. (under-review). Parent’s thoughts on the PEDI, Developmental Medicine Child Neurology.
Acknowledgments
Anne Klassen is a recipient of the Canadian Institute of Health Research career award, and Nora Fayed is a recipient of the Canadian Institute of Health Research postdoctoral fellowship.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Ahuja, B., Klassen, A.F., Satz, R. et al. A review of patient-reported outcomes for children and adolescents with obesity. Qual Life Res 23, 759–770 (2014). https://doi.org/10.1007/s11136-013-0459-9
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11136-013-0459-9