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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
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    References listed on IDEAS

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    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.
    2. Louis S. Matza & Katie D. Stewart & Marie Fournier & Donna Rowen & Robin Lachmann & Maurizio Scarpa & Eugen Mengel & Travis Obermeyer & Evren Ayik & Fernando Laredo & Ruth Pulikottil-Jacob, 2024. "Assessment of health state utilities associated with adult and pediatric acid sphingomyelinase deficiency (ASMD)," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 25(8), pages 1437-1448, November.
    3. Powell, Philip A. & Rowen, Donna & Keetharuth, Anju & Mukuria, Clara & Shah, Koonal, 2024. "Who should value children's health and how? An international Delphi study," Social Science & Medicine, Elsevier, vol. 355(C).

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