IDEAS home Printed from https://ideas.repec.org/a/spr/pharme/v40y2022i4d10.1007_s40273-021-01128-0.html
   My bibliography  Save this article

Systematic Review of Conceptual, Age, Measurement and Valuation Considerations for Generic Multidimensional Childhood Patient-Reported Outcome Measures

Author

Listed:
  • Joseph Kwon

    (University of Sheffield)

  • Louise Freijser

    (University of Melbourne)

  • Elisabeth Huynh

    (Australian National University)

  • Martin Howell

    (University of Sydney)

  • Gang Chen

    (Monash University)

  • Kamran Khan

    (University of Warwick)

  • Shahd Daher

    (University of Oxford)

  • Nia Roberts

    (University of Oxford)

  • Conrad Harrison

    (University of Oxford)

  • Sarah Smith

    (London School of Hygiene and Tropical Medicine)

  • Nancy Devlin

    (University of Melbourne)

  • Kirsten Howard

    (University of Sydney)

  • Emily Lancsar

    (Australian National University)

  • Cate Bailey

    (University of Melbourne)

  • Jonathan Craig

    (Flinders University)

  • Kim Dalziel

    (University of Melbourne)

  • Alison Hayes

    (University of Sydney)

  • Brendan Mulhern

    (University of Technology Sydney)

  • Germaine Wong

    (University of Sydney)

  • Julie Ratcliffe

    (Flinders University)

  • Stavros Petrou

    (University of Oxford)

Abstract

Background and Aims Patient-reported outcome measures (PROMs) for children (aged ≤ 18 years) present methodological challenges. PROMs can be categorised by their diverse underlying conceptual bases, including functional, disability and health (FDH) status; quality of life (QoL); and health-related quality of life (HRQoL). Some PROMs are designed to be accompanied by preference weights. PROMs should account for childhood developmental differences by incorporating age-appropriate health/QoL domains, guidance on respondent type(s) and design. This systematic review aims to identify generic multidimensional childhood PROMs and synthesise their characteristics by conceptual basis, target age, measurement considerations, and the preference-based value sets that accompany them. Methods The study protocol was registered in the Prospective Register of Systematic Reviews (CRD42021230833), and reporting followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We conducted systematic database searches for generic multidimensional childhood PROMs covering the period 2012–2020, which we combined with published PROMs identified by an earlier systematic review that covered the period 1992–2011. A second systematic database search identified preference-based value sets for generic multidimensional PROMs. The PROMs were categorised by conceptual basis (FDH status, QoL and HRQoL) and by target age (namely infants and pre-schoolers aged

Suggested Citation

  • Joseph Kwon & Louise Freijser & Elisabeth Huynh & Martin Howell & Gang Chen & Kamran Khan & Shahd Daher & Nia Roberts & Conrad Harrison & Sarah Smith & Nancy Devlin & Kirsten Howard & Emily Lancsar & , 2022. "Systematic Review of Conceptual, Age, Measurement and Valuation Considerations for Generic Multidimensional Childhood Patient-Reported Outcome Measures," PharmacoEconomics, Springer, vol. 40(4), pages 379-431, April.
    • Handle: RePEc:spr:pharme:v:40:y:2022:i:4:d:10.1007_s40273-021-01128-0
    DOI: 10.1007/s40273-021-01128-0
    as

    Download full text from publisher

    File URL: http://link.springer.com/10.1007/s40273-021-01128-0
    File Function: Abstract
    Download Restriction: Access to the full text of the articles in this series is restricted.
    File URL: https://libkey.io/10.1007/s40273-021-01128-0?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 search for a different version of it.

    References listed on IDEAS

    as
    1. 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.
    2. Christopher McCabe & Katherine Stevens & Jennifer Roberts & John Brazier, 2005. "Health state values for the HUI 2 descriptive system: results from a UK survey," Health Economics, John Wiley & Sons, Ltd., vol. 14(3), pages 231-244, March.
    3. Ruslan Jabrayilov & Antoinette D I van Asselt & Karin M Vermeulen & Sheri Volger & Patrick Detzel & Livia Dainelli & Paul F M Krabbe & for the Pediatrics expert group, 2018. "A descriptive system for the Infant health-related Quality of life Instrument (IQI): Measuring health with a mobile app," PLOS ONE, Public Library of Science, vol. 13(8), pages 1-14, August.
    4. Drummond, Michael F. & Sculpher, Mark J. & Claxton, Karl & Stoddart, Greg L. & Torrance, George W., 2015. "Methods for the Economic Evaluation of Health Care Programmes," OUP Catalogue, Oxford University Press, edition 4, number 9780199665884.
    5. Julie Seligson & E. Huebner & Robert Valois, 2003. "Preliminary Validation of the Brief Multidimensional Students' Life Satisfaction Scale (BMSLSS)," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 61(2), pages 121-145, February.
    6. Julie Ratcliffe & Leah Couzner & Terry Flynn & Michael Sawyer & Katherine Stevens & John Brazier & Leonie Burgess, 2011. "Valuing child health utility 9D health states with a young adolescent sample," Applied Health Economics and Health Policy, Springer, vol. 9(1), pages 15-27, January.
    7. Julie Ratcliffe & Gang Chen & Katherine Stevens & Sandra Bradley & Leah Couzner & John Brazier & Michael Sawyer & Rachel Roberts & Elisabeth Huynh & Terry Flynn, 2015. "Valuing Child Health Utility 9D Health States with Young Adults: Insights from a Time Trade Off Study," Applied Health Economics and Health Policy, Springer, vol. 13(5), pages 485-492, October.
    8. Donna Rowen & John Brazier & Ben Van Hout, 2015. "A Comparison of Methods for Converting DCE Values onto the Full Health-Dead QALY Scale," Medical Decision Making, , vol. 35(3), pages 328-340, April.
    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. Victoria Gale & Jill Carlton, 2023. "Including Young Children in the Development and Testing of Patient Reported Outcome (PRO) Instruments: A Scoping Review of Children’s Involvement and Qualitative Methods," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 16(5), pages 425-456, 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. Paul F M Krabbe & Ruslan Jabrayilov & Patrick Detzel & Livia Dainelli & Karin M Vermeulen & Antoinette D I van Asselt, 2020. "A two-step procedure to generate utilities for the Infant health-related Quality of life Instrument (IQI)," PLOS ONE, Public Library of Science, vol. 15(4), pages 1-14, April.
    2. Ratcliffe, Julie & Huynh, Elisabeth & Chen, Gang & Stevens, Katherine & Swait, Joffre & Brazier, John & Sawyer, Michael & Roberts, Rachel & Flynn, Terry, 2016. "Valuing the Child Health Utility 9D: Using profile case best worst scaling methods to develop a new adolescent specific scoring algorithm," Social Science & Medicine, Elsevier, vol. 157(C), pages 48-59.
    3. Kim Dalziel & Max Catchpool & Borja García-Lorenzo & Inigo Gorostiza & Richard Norman & Oliver Rivero-Arias, 2020. "Feasibility, Validity and Differences in Adolescent and Adult EQ-5D-Y Health State Valuation in Australia and Spain: An Application of Best–Worst Scaling," PharmacoEconomics, Springer, vol. 38(5), pages 499-513, May.
    4. Osman, Ahmed M.Y. & Wu, Jing & He, Xiaoning & Chen, Gang, 2021. "Eliciting SF-6Dv2 health state utilities using an anchored best-worst scaling technique," Social Science & Medicine, Elsevier, vol. 279(C).
    5. Stefan A. Lipman & Brigitte A. B. Essers & Aureliano P. Finch & Ayesha Sajjad & Peep F. M. Stalmeier & Bram Roudijk, 2022. "In a Child’s Shoes: Composite Time Trade-Off Valuations for EQ-5D-Y-3L with Different Proxy Perspectives," PharmacoEconomics, Springer, vol. 40(2), pages 181-192, December.
    6. Mina Bahrampour & Joshua Byrnes & Richard Norman & Paul A. Scuffham & Martin Downes, 2020. "Discrete choice experiments to generate utility values for multi-attribute utility instruments: a systematic review of methods," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 21(7), pages 983-992, September.
    7. Haode Wang & Donna L. Rowen & John E. Brazier & Litian Jiang, 2023. "Discrete Choice Experiments in Health State Valuation: A Systematic Review of Progress and New Trends," Applied Health Economics and Health Policy, Springer, vol. 21(3), pages 405-418, May.
    8. Fanni Rencz & Gábor Ruzsa & Alex Bató & Zhihao Yang & Aureliano Paolo Finch & Valentin Brodszky, 2022. "Value Set for the EQ-5D-Y-3L in Hungary," PharmacoEconomics, Springer, vol. 40(2), pages 205-215, December.
    9. Ruvini M. Hettiarachchi & Sanjeewa Kularatna & Joshua Byrnes & Brendan Mulhern & Gang Chen & Paul A. Scuffham, 2023. "Valuing the Dental Caries Utility Index in Australia," Medical Decision Making, , vol. 43(7-8), pages 901-913, October.
    10. Donna Rowen & Oliver Rivero-Arias & Nancy Devlin & Julie Ratcliffe, 2020. "Review of Valuation Methods of Preference-Based Measures of Health for Economic Evaluation in Child and Adolescent Populations: Where are We Now and Where are We Going?," PharmacoEconomics, Springer, vol. 38(4), pages 325-340, April.
    11. Edward J. D. Webb & John O’Dwyer & David Meads & Paul Kind & Penny Wright, 2020. "Transforming discrete choice experiment latent scale values for EQ-5D-3L using the visual analogue scale," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 21(5), pages 787-800, July.
    12. Paul Mark Mitchell & Samantha Husbands & Sarah Byford & Philip Kinghorn & Cara Bailey & Tim J. Peters & Joanna Coast, 2021. "Challenges in developing capability measures for children and young people for use in the economic evaluation of health and care interventions," Health Economics, John Wiley & Sons, Ltd., vol. 30(9), pages 1990-2003, September.
    13. Irina Pokhilenko & Luca M. M. Janssen & Aggie T. G. Paulus & Ruben M. W. A. Drost & William Hollingworth & Joanna C. Thorn & Sian Noble & Judit Simon & Claudia Fischer & Susanne Mayer & Luis Salvador-, 2023. "Development of an Instrument for the Assessment of Health-Related Multi-sectoral Resource Use in Europe: The PECUNIA RUM," Applied Health Economics and Health Policy, Springer, vol. 21(2), pages 155-166, March.
    14. Chiranjeev Sanyal & Don Husereau, 2020. "Systematic Review of Economic Evaluations of Services Provided by Community Pharmacists," Applied Health Economics and Health Policy, Springer, vol. 18(3), pages 375-392, June.
    15. Aline Lopes Moreira & Jorge Castellá Sarriera & Leonardo Fernandes Martins & Lívia Maria Bedin & Maria Angela Mattar Yunes & Luciana Cassarino Perez & Murilo Ricardo Zibetti, 2022. "Psychometric Properties of Children’s Subjective Well-Being Scales: a Multigroup Study Investigating School Type, Gender, Age and Region of Children in the South and Southeast Regions of Brazil," Child Indicators Research, Springer;The International Society of Child Indicators (ISCI), vol. 15(2), pages 657-679, April.
    16. Andrew J. Mirelman & Miqdad Asaria & Bryony Dawkins & Susan Griffin & Richard Cookson & Peter Berman, 2020. "Fairer Decisions, Better Health for All: Health Equity and Cost-Effectiveness Analysis," World Scientific Book Chapters, in: Paul Revill & Marc Suhrcke & Rodrigo Moreno-Serra & Mark Sculpher (ed.), Global Health Economics Shaping Health Policy in Low- and Middle-Income Countries, chapter 4, pages 99-132, World Scientific Publishing Co. Pte. Ltd..
    17. Christopher M Doran & Irina Kinchin, 2020. "Economic and epidemiological impact of youth suicide in countries with the highest human development index," PLOS ONE, Public Library of Science, vol. 15(5), pages 1-11, May.
    18. Round, Jeff, 2012. "Is a QALY still a QALY at the end of life?," Journal of Health Economics, Elsevier, vol. 31(3), pages 521-527.
    19. Boniface Oyugi & Olena Nizalova & Sally Kendall & Stephen Peckham, 2024. "Does a free maternity policy in Kenya work? Impact and cost–benefit consideration based on demographic health survey data," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 25(1), pages 77-89, February.
    20. Lili Wang & Lei Si & Fiona Cocker & Andrew J. Palmer & Kristy Sanderson, 2018. "A Systematic Review of Cost-of-Illness Studies of Multimorbidity," Applied Health Economics and Health Policy, Springer, vol. 16(1), pages 15-29, February.

    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:40:y:2022:i:4:d:10.1007_s40273-021-01128-0. 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.