TY - JOUR
T1 - Recommendations to address respondent burden associated with patient-reported outcome assessment
AU - Aiyegbusi, Olalekan Lee
AU - Cruz Rivera, Samantha
AU - Roydhouse, Jessica
AU - Kamudoni, Paul
AU - Alder, Yvonne
AU - Anderson, Nicola
AU - Baldwin, Robert Mitchell
AU - Bhatnagar, Vishal
AU - Black, Jennifer
AU - Bottomley, Andrew
AU - Brundage, Michael
AU - Cella, David
AU - Collis, Philip
AU - Davies, Elin-Haf
AU - Denniston, Alastair K.
AU - Efficace, Fabio
AU - Gardner, Adrian
AU - Gnanasakthy, Ari
AU - Golub, Robert M.
AU - Hughes, Sarah E.
AU - Jeyes, Flic
AU - Kern, Scottie
AU - King-Kallimanis, Bellinda L.
AU - Martin, Antony
AU - Mcmullan, Christel
AU - Mercieca-Bebber, Rebecca
AU - Monteiro, Joao
AU - Peipert, John Devin
AU - Quijano-Campos, Juan Carlos
AU - Quinten, Chantal
AU - Rantell, Khadija Rerhou
AU - Regnault, Antoine
AU - Sasseville, Maxime
AU - Schougaard, Liv Marit Valen
AU - Sherafat-Kazemzadeh, Roya
AU - Snyder, Claire
AU - Stover, Angela M.
AU - Verdi, Rav
AU - Wilson, Roger
AU - Calvert, Melanie J.
PY - 2024/2/29
Y1 - 2024/2/29
N2 - Patient-reported outcomes (PROs) are increasingly used in healthcare research to provide evidence of the benefits and risks of interventions from the patient perspective and to inform regulatory decisions and health policy. The use of PROs in clinical practice can facilitate symptom monitoring, tailor care to individual needs, aid clinical decision-making and inform value-based healthcare initiatives. Despite their benefits, there are concerns that the potential burden on respondents may reduce their willingness to complete PROs, with potential impact on the completeness and quality of the data for decision-making. We therefore conducted an initial literature review to generate a list of candidate recommendations aimed at reducing respondent burden. This was followed by a two-stage Delphi survey by an international multi-stakeholder group. A consensus meeting was held to finalize the recommendations. The final consensus statement includes 19 recommendations to address PRO respondent burden in healthcare research and clinical practice. If implemented, these recommendations may reduce PRO respondent burden.
AB - Patient-reported outcomes (PROs) are increasingly used in healthcare research to provide evidence of the benefits and risks of interventions from the patient perspective and to inform regulatory decisions and health policy. The use of PROs in clinical practice can facilitate symptom monitoring, tailor care to individual needs, aid clinical decision-making and inform value-based healthcare initiatives. Despite their benefits, there are concerns that the potential burden on respondents may reduce their willingness to complete PROs, with potential impact on the completeness and quality of the data for decision-making. We therefore conducted an initial literature review to generate a list of candidate recommendations aimed at reducing respondent burden. This was followed by a two-stage Delphi survey by an international multi-stakeholder group. A consensus meeting was held to finalize the recommendations. The final consensus statement includes 19 recommendations to address PRO respondent burden in healthcare research and clinical practice. If implemented, these recommendations may reduce PRO respondent burden.
U2 - 10.1038/s41591-024-02827-9
DO - 10.1038/s41591-024-02827-9
M3 - Article
SN - 1078-8956
JO - Nature Medicine
JF - Nature Medicine
ER -