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Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection

Author

Listed:
  • Olalekan Lee Aiyegbusi

    (University of Birmingham
    University of Birmingham
    NIHR Birmingham Biomedical Research Centre at University Hospitals Birmingham NHS Foundation Trust
    University of Birmingham)

  • Jessica Roydhouse

    (University of Tasmania)

  • Samantha Cruz Rivera

    (University of Birmingham
    Birmingham Health Partners Centre for Regulatory Science and Innovation
    University of Birmingham)

  • Paul Kamudoni

    (Healthcare Business of Merck KGaA)

  • Peter Schache

    (LAIFE Reply GmbH)

  • Roger Wilson

    (University of Birmingham)

  • Richard Stephens

    (University of Birmingham)

  • Melanie Calvert

    (University of Birmingham
    University of Birmingham
    NIHR Birmingham Biomedical Research Centre at University Hospitals Birmingham NHS Foundation Trust
    University of Birmingham)

Abstract

Patient-reported outcomes (PROs) are used in clinical trials to provide evidence of the benefits and risks of interventions from a patient perspective and to inform regulatory decisions and health policy. The collection of PROs in routine practice can facilitate monitoring of patient symptoms; identification of unmet needs; prioritisation and/or tailoring of treatment to the needs of individual patients and inform value-based healthcare initiatives. However, respondent burden needs to be carefully considered and addressed to avoid high rates of missing data and poor reporting of PRO results, which may lead to poor quality data for regulatory decision making and/or clinical care.

Suggested Citation

  • Olalekan Lee Aiyegbusi & Jessica Roydhouse & Samantha Cruz Rivera & Paul Kamudoni & Peter Schache & Roger Wilson & Richard Stephens & Melanie Calvert, 2022. "Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection," Nature Communications, Nature, vol. 13(1), pages 1-8, December.
  • Handle: RePEc:nat:natcom:v:13:y:2022:i:1:d:10.1038_s41467-022-33826-4
    DOI: 10.1038/s41467-022-33826-4
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    References listed on IDEAS

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    1. Kelly M. Dumais & Nadeeka Dias & Laura Khurana & Sarah Tressel Gary & Brooke Witherspoon & Christopher J. Evans & Susan M. Dallabrida, 2019. "Preferences for Use and Design of Electronic Patient-Reported Outcomes in Patients with Chronic Obstructive Pulmonary Disease," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 12(6), pages 621-629, December.
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