IDEAS home Printed from https://ideas.repec.org/a/spr/pharme/v24y2006i12p1199-1220.html

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

Author

Listed:
  • Ulrike Ravens-Sieberer

  • Michael Erhart
  • Nora Wille
  • Ralf Wetzel
  • Jennifer Nickel
  • Monika Bullinger

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. Copyright Adis Data Information BV 2006

Suggested Citation

  • Ulrike Ravens-Sieberer & Michael Erhart & Nora Wille & Ralf Wetzel & Jennifer Nickel & Monika Bullinger, 2006. "Generic Health-Related Quality-of-Life Assessment in Children and Adolescents," PharmacoEconomics, Springer, vol. 24(12), pages 1199-1220, December.
    • Handle: RePEc:spr:pharme:v:24:y:2006:i:12:p:1199-1220
    DOI: 10.2165/00019053-200624120-00005
    as

    Download full text from publisher

    File URL: http://hdl.handle.net/10.2165/00019053-200624120-00005
    Download Restriction: Access to full text is restricted to subscribers.
    File URL: https://libkey.io/10.2165/00019053-200624120-00005?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to

    for a different version of it.

    References listed on IDEAS

    as
    1. H. I. Brunner & D. Maker & B. Grundland & N. L. Young & V. Blanchette & A-M. Stain & B. M. Feldman, 2003. "Preference-Based Measurement of Health-Related Quality of Life (HRQL) in Children with Chronic Musculoskeletal Disorders (MSKDs)," Medical Decision Making, , vol. 23(4), pages 314-322, July.
    2. Ulrike Ravens-Sieberer & Angela Gosch & Thomas Abel & Pascal Auquier & Bärbel-Maria Bellach & Jeanet Bruil & Wolfgang Dür & Mick Power & Luis Rajmil, 2001. "Quality of life in children and adolescents: a European public health perspective," International Journal of Public Health, Springer;Swiss School of Public Health (SSPH+), vol. 46(5), pages 294-302, September.
    3. Trevor Parmenter, 1994. "Quality of life as a concept and measurable entity," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 33(1), pages 9-46, August.
    4. Erik Nord, 1995. "The Person-trade-off Approach to Valuing Health Care Programs," Medical Decision Making, , vol. 15(3), pages 201-208, August.
    5. Marie-Christine Taillefer & Gilles Dupuis & Marie-Anne Roberge & Sylvie LeMay, 2003. "Health-Related Quality of Life Models: Systematic Review of the Literature," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 64(2), pages 293-323, November.
    6. Sullivan, Mark, 2003. "The new subjective medicine: taking the patient's point of view on health care and health," Social Science & Medicine, Elsevier, vol. 56(7), pages 1595-1604, April.
    7. Alan Diener & Bernie O'Brien & Amiram Gafni, 1998. "Health care contingent valuation studies: a review and classification of the literature," Health Economics, John Wiley & Sons, Ltd., vol. 7(4), pages 313-326, June.
    8. Sprangers, Mirjam A. G. & Schwartz, Carolyn E., 1999. "Integrating response shift into health-related quality of life research: a theoretical model," Social Science & Medicine, Elsevier, vol. 48(11), pages 1507-1515, June.
    9. Rogerson, Robert J., 1995. "Environmental and health-related quality of life: Conceptual and methodological similarities," Social Science & Medicine, Elsevier, vol. 41(10), pages 1373-1382, November.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Akabayashi, Hideo & Ruberg, Tim & Shikishima, Chizuru & Yamashita, Jun, 2023. "Education-oriented and care-oriented preschools: Implications on child development," Labour Economics, Elsevier, vol. 84(C).
    2. Teija Nuutinen & Eva Roos & Carola Ray & Jari Villberg & Raili Välimaa & Mette Rasmussen & Bjørn Holstein & Emmanuelle Godeau & Francois Beck & Damien Léger & Jorma Tynjälä, 2014. "Computer use, sleep duration and health symptoms: a cross-sectional study of 15-year olds in three countries," International Journal of Public Health, Springer;Swiss School of Public Health (SSPH+), vol. 59(4), pages 619-628, August.
    3. Abraham G. Welie & Elly Stolk & Clara Mukuria & Yared Belete Belay & Murray D. Krahn & Beate Sander & Gebremedhin Beedemariam Gebretekle, 2022. "Reliability and validity of using EQ-5D-5L among healthy and adolescents with major mental health disorders in Ethiopia," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 23(7), pages 1105-1119, September.
    4. Michael D. Seidman & Robert T. Standring, 2010. "Noise and Quality of Life," IJERPH, MDPI, vol. 7(10), pages 1-9, October.
    5. Carla Guerriero & Abrines Jaume N. & Diaz-Ordaz K. & Brown K. & Wray J. & Ashworth J. & Abbiss M. & Cairns J., 2018. "Using Animation to Self-report Health: a Randomized Experiment with Children," CSEF Working Papers 508, Centre for Studies in Economics and Finance (CSEF), University of Naples, Italy.
    6. Anne-Marie Etienne & Gilles Dupuis & Elisabeth Spitz & Fabienne Lemetayer & Pierre Missotten, 2011. "The Gap Concept as a Quality of Life Measure: Validation Study of the Child Quality of Life Systemic Inventory," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 100(2), pages 241-257, January.
    7. Erika Ikeda & Chris Krägeloh & Tineke Water & Erica A. Hinckson, 2016. "An Exploratory Study of Self-reported Quality of Life in Children with Autism Spectrum Disorder and Intellectual Disability," Child Indicators Research, Springer;The International Society of Child Indicators (ISCI), vol. 9(1), pages 133-153, March.
    8. Chung-Ping Cheng & Wei-Ming Luh & Ai-Lun Yang & Chia-Ting Su & Chung-Ying Lin, 2016. "Agreement of Children and Parents Scores on Chinese Version of Pediatric Quality of Life Inventory Version 4.0: Further Psychometric Development," Applied Research in Quality of Life, Springer;International Society for Quality-of-Life Studies, vol. 11(3), pages 891-906, September.
    9. Miguel Angel Perez-Sousa & Pedro R. Olivares & Rocio Carrasco-Zahinos & Antonio Garcia-Hermoso, 2023. "Normative Values and Psychometric Properties of EQ-5D-Y-3L in Chilean Youth Population among Different Weight Statuses," IJERPH, MDPI, vol. 20(5), pages 1-9, February.
    10. Caique de Melo do Espirito Santo & Verônica Souza Santos & Yasmin Brasileiro de Souza & Aureliano Paolo Finch & Janine Verstraete & Gisela Cristiane Miyamoto & Tiê P. Yamato, 2025. "Comparing the measurement properties of the EQ-5D-Y-3L, EQ-5D-Y-5L and CHU9D in children and adolescents: a measurement property study," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 26(8), pages 1347-1368, November.
    11. Clazien Bouwmans & Annemarie Kolk & Mark Oppe & Saskia Schawo & Elly Stolk & Michel Agthoven & Jan Buitelaar & LeonaHakkaart Roijen, 2014. "Validity and responsiveness of the EQ-5D and the KIDSCREEN-10 in children with ADHD," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 15(9), pages 967-977, December.
    12. Becky Pennington & Sarah Davis & Holly Cranmer, 2026. "Caring for and Caring about in Economic Evaluation: Modelling the Family and Caregiving Effects," PharmacoEconomics, Springer, vol. 44(1), pages 13-23, January.
    13. Lisa Prosser & James Hammitt & Ron Keren, 2007. "Measuring Health Preferences for Use in Cost-Utility and Cost-Benefit Analyses of Interventions in Children," PharmacoEconomics, Springer, vol. 25(9), pages 713-726, September.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Damschroder, Laura J. & Zikmund-Fisher, Brian J. & Ubel, Peter A., 2005. "The impact of considering adaptation in health state valuation," Social Science & Medicine, Elsevier, vol. 61(2), pages 267-277, July.
    2. Joseph T. King Jr. & Joel Tsevat & Judith R. Lave & Mark S. Roberts, 2005. "Willingness to Pay for a Quality-Adjusted Life Year: Implications for Societal Health Care Resource Allocation," Medical Decision Making, , vol. 25(6), pages 667-677, November.
    3. Marie-Christine Taillefer & Gilles Dupuis & Marie-Anne Roberge & Sylvie LeMay, 2003. "Health-Related Quality of Life Models: Systematic Review of the Literature," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 64(2), pages 293-323, November.
    4. Joseph T. King Jr. & Joel Tsevat & Mark S. Roberts, 2004. "Positive Association between Current Health and Health Values for Hypothetical Disease States," Medical Decision Making, , vol. 24(4), pages 367-378, August.
    5. Ryan, Mandy & Scott, David A. & Donaldson, Cam, 2004. "Valuing health care using willingness to pay: a comparison of the payment card and dichotomous choice methods," Journal of Health Economics, Elsevier, vol. 23(2), pages 237-258, March.
    6. František Petrovič & Patrik Maturkanič, 2022. "Urban-Rural Dichotomy of Quality of Life," Sustainability, MDPI, vol. 14(14), pages 1-18, July.
    7. Franz Hackl & Gerald J. Pruckner, 2005. "Warm glow, free‐riding and vehicle neutrality in a health‐related contingent valuation study," Health Economics, John Wiley & Sons, Ltd., vol. 14(3), pages 293-306, March.
    8. Miller, Nancy & Weinstein, Marcie, 2007. "Participation and knowledge related to a nursing home admission decision among a working age population," Social Science & Medicine, Elsevier, vol. 64(2), pages 303-313, January.
    9. Erica I Lubetkin & Di Long & Juanita A Haagsma & Mathieu F Janssen & Gouke J Bonsel, 2022. "Health inequities as measured by the EQ-5D-5L during COVID-19: Results from New York in healthy and diseased persons," PLOS ONE, Public Library of Science, vol. 17(7), pages 1-18, July.
    10. Michaël Schwarzinger & Jean‐Louis Lanoë & Erik Nord & Isabelle Durand‐Zaleski, 2004. "Lack of multiplicative transitivity in person trade‐off responses," Health Economics, John Wiley & Sons, Ltd., vol. 13(2), pages 171-181, February.
    11. Samuel Shye, 2010. "The Motivation to Volunteer: A Systemic Quality of Life Theory," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 98(2), pages 183-200, September.
    12. Adam Finn & Stuart McFadyen & Colin Hoskins, 2003. "Valuing the Canadian Broadcasting Corporation," Journal of Cultural Economics, Springer;The Association for Cultural Economics International, vol. 27(3), pages 177-192, November.
    13. Svenja M. Spuling & Oliver Huxhold & Susanne Wurm, 2017. "Predictors of Self-Rated Health: Does Education Play a Role Above and Beyond Age?," The Journals of Gerontology: Series B, The Gerontological Society of America, vol. 72(3), pages 415-424.
    14. Murray, Christopher J. L. & Acharya, Arnab K., 1997. "Understanding DALYs," Journal of Health Economics, Elsevier, vol. 16(6), pages 703-730, December.
    15. Panos Pashardes & Nicoletta Pashourtidou, 2011. "Consumer welfare from publicly supplemented private goods: age and income effects on demand for health care," Empirical Economics, Springer, vol. 41(3), pages 865-885, December.
    16. Alejandro Legaz-Arrese & Carmen Mayolas-Pi & Miguel Ángel Oviedo-Caro & Álvaro Pano-Rodriguez & Isaac López-Laval & Miguel Navarro-Gómez & Sebastian Sitko, 2025. "Associations between the Level of Competition and the Type of Sport with health-related Quality of Life in Adolescents," Child Indicators Research, Springer;The International Society of Child Indicators (ISCI), vol. 18(5), pages 2203-2221, October.
    17. Diana P. Pozuelo‐Carrascosa & Vicente Martínez‐Vizcaíno & Mairena Sánchez‐López & Raquel Bartolomé‐Gutiérrez & Beatriz Rodríguez‐Martín & Blanca Notario‐Pacheco, 2017. "Resilience as a mediator between cardiorespiratory fitness and mental health‐related quality of life: A cross‐sectional study," Nursing & Health Sciences, John Wiley & Sons, vol. 19(3), pages 316-321, September.
    18. Josep M Campanera & Paul Higgins, 2011. "Quality of Life in Urban-Classified and Rural-Classified English Local Authority Areas," Environment and Planning A, , vol. 43(3), pages 683-702, March.
    19. Xue, Hong & Mainville, Denise Y. & You, Wen & Nayga, Rodolfo M., Jr., 2009. "Nutrition Knowledge, Sensory Characteristics and Consumers’ Willingness to Pay for Pasture-Fed Beef," 2009 Annual Meeting, July 26-28, 2009, Milwaukee, Wisconsin 49277, Agricultural and Applied Economics Association.
    20. Hui Zhang & Christian Wernz & Danny R. Hughes, 2018. "Modeling and designing health care payment innovations for medical imaging," Health Care Management Science, Springer, vol. 21(1), pages 37-51, March.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:spr:pharme:v:24:y:2006:i:12:p:1199-1220. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Sonal Shukla or Springer Nature Abstracting and Indexing (email available below). General contact details of provider: http://www.springer.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.