Recommendations to address respondent burden associated with patient-reported outcome assessment

Recommendations to address respondent burden associated with patient-reported outcome assessment

29 February 2024 | Olakean Lee Aiyegbusi, Samantha Cruz Rivera, Jessica Roydhouse, Paul Kamudoni, Yvonne Alder, Nicola Anderson, Robert Mitchell Baldwin, Vishal Bhatnagar, Jennifer Black, Andrew Bottomley, Michael Brundage, David Cella, Philip Collis, Elin-Haf Davies, Alastair K. Denniston, Fabio Efficace, Adrian Gardner, Ari Gnanasakthy, Robert M. Golub, Sarah E. Hughes, Flic Jeyes, Scottie Kern, Bellinda L. King-Kallimanis, Antony Martin, Christel McMullan, Rebecca Mercieca-Bebber, Joao Monteiro, John Devin Peipert, Juan Carlos Quijano-Campos, Chantal Quinten, Khadija Rerhou Rantell, Antoine Regnault, Maxime Sasseville, Liv Marit Valen Schougaard, Roya Sherafat-Kazemzadeh, Claire Snyder, Angela M. Stover, Rav Verdi, Roger Wilson, Melanie J. Calvert
The consensus statement addresses the issue of respondent burden associated with patient-reported outcomes (PROs) in healthcare research and clinical practice. It highlights the importance of PROs in providing evidence of intervention benefits and risks from the patient perspective, but acknowledges the potential for respondent burden to reduce willingness to complete these assessments. The statement includes 19 recommendations aimed at minimizing respondent burden, developed through an international Delphi process and consensus meeting. These recommendations cover three main categories: rationale and schedule for PRO assessment, measure selection, and measure delivery. Key points include involving patients and clinicians in the design of PROs, balancing data collection burden with the quality and quantity of data needed, ensuring culturally and linguistically relevant measures, and providing clear instructions and support for respondents. The statement emphasizes the importance of considering the target population's needs and preferences in the design and administration of PROs to ensure high-quality data collection.The consensus statement addresses the issue of respondent burden associated with patient-reported outcomes (PROs) in healthcare research and clinical practice. It highlights the importance of PROs in providing evidence of intervention benefits and risks from the patient perspective, but acknowledges the potential for respondent burden to reduce willingness to complete these assessments. The statement includes 19 recommendations aimed at minimizing respondent burden, developed through an international Delphi process and consensus meeting. These recommendations cover three main categories: rationale and schedule for PRO assessment, measure selection, and measure delivery. Key points include involving patients and clinicians in the design of PROs, balancing data collection burden with the quality and quantity of data needed, ensuring culturally and linguistically relevant measures, and providing clear instructions and support for respondents. The statement emphasizes the importance of considering the target population's needs and preferences in the design and administration of PROs to ensure high-quality data collection.
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