TY - JOUR
T1 - Establishing a core outcome measure for life participation in patients receiving peritoneal dialysis
T2 - A Standardised Outcomes in Nephrology–Peritoneal Dialysis consensus workshop report
AU - Cheetham, Melissa S.
AU - Wilkie, Martin
AU - Loud, Fiona
AU - Manera, Karine E.
AU - Ju, Angela
AU - Figueiredo, Ana
AU - Farragher, Janine
AU - Hurst, Helen
AU - Jassal, Sarbjit V.
AU - Mehrotra, Rajnish
AU - Morton, Rachael L.
AU - Schwartz, Daniel
AU - Shen, Jenny I.
AU - Walker, Rachael
AU - Cho, Yeoungjee
AU - Johnson, David W.
AU - Craig, Jonathan C.
AU - Anumudu, Samaya
AU - Baumgart, Amanda
AU - Gonzalez, Andrea Matus
AU - Scholes-Robertson, Nicole
AU - Viecelli, Andrea K.
AU - Tong, Allison
AU - On behalf of the SONG-PD Life Participation Workshop Investigators
AU - Wang, Angela
AU - Hemmelgarn, Brenda
AU - Manns, Braden
AU - Wheeler, David
AU - Gill, John
AU - Tugwell, Peter
AU - Pecoits-Filho, Roberto
AU - Crowe, Sally
AU - Harris, Tess
AU - van Biesen, Wim
AU - Winkelmayer, Wolfgang
AU - Brown, Edwina
AU - Brunier, Gillian
AU - Perl, Jeffrey
AU - Dong, Jie
AU - Naicker, Sarala
AU - Dunning, Sue Ann
AU - Dunning, Tony
AU - Martin, Adam
AU - Bernier-Jean, Amelie
AU - Sharma, Ankit
AU - Teixera-Pinto, Armando
AU - Sautenet, Benedicte
AU - Hanson, Camilla
AU - Guha, Chandana
AU - Logeman, Charlotte
AU - Sumpton, Daniel
AU - Walbaum, David
AU - Hannan, Elyssa
AU - O'Lone, Emma
AU - Au, Eric
AU - Kerklaan, Jasmijn
AU - Azukaitis, Karolis
AU - Dunn, Louese
AU - Howell, Martin
AU - Evangelidis, Nicole
AU - Amir, Noa
AU - Natale, Patrizia
AU - Marshall, Peter
AU - Bell, Samira
AU - Carter, Simon
AU - Gutman, Talia
AU - Smith, Alice
AU - Aufricht, Christoph
AU - Szeto, Cheuk Chun
AU - Struijk, Dirk
AU - Castle, Ellen
AU - Elphick, Emma
AU - Wallace, Eric
AU - Knight, John
AU - Foo, Marjorie
AU - Lambie, Mark
AU - Nicdao, Mary Ann
AU - Lichodziejewska-Niemierko, Monika
AU - Davies, Simon
AU - Kanjanabuch, Talerngsak
AU - Kim, Yong Lim
AU - Lau, Agnes
AU - Horton, Danielle
AU - Forfang, Dereck
AU - Harrison, Donna
AU - Robinson, Evelyn
AU - Braddock, Gary
AU - Grossman, George
AU - Chestney, Juliana
AU - Clark, Karrin
AU - Pennington, Keith
AU - Richardson, Lisa
AU - Davis, Mark
AU - Verdin, Nancy
AU - Jefferson, Nichole
AU - Gedney, Nieltje
AU - Chestney, Norman
AU - Griffiths, Pamela
AU - Phang, Raymond
AU - Kidwell, Sharon
AU - Downs, Shelley
AU - Ball, Terence
PY - 2022/11
Y1 - 2022/11
N2 - Background: Life participation is an outcome of critical importance to patients receiving peritoneal dialysis (PD). However, there is no widely accepted or validated tool for measuring life participation in patients receiving PD. Methods: Online consensus workshop to identify the essential characteristics of life participation as a core outcome, with the goal of establishing a patient-reported outcome measure for use in all trials in patients receiving PD. Thematic analysis of transcripts was performed. Results: Fifty-five participants, including 17 patients and caregivers, from 15 countries convened via online videoconference. Four themes were identified: reconfiguring expectations of daily living (accepting day-to-day fluctuation as the norm, shifting thresholds of acceptability, preserving gains in flexibility and freedom), ensuring broad applicability and interpretability (establishing cross-cultural relevance, incorporating valued activities, distinguishing unmodifiable barriers to life participation), capturing transitions between modalities and how they affect life participation (responsive to trajectory towards stable, reflecting changes with dialysis transitions) and maximising feasibility of implementation (reducing completion burden, administrable with ease and flexibility). Conclusions: There is a need for a validated, generalisable outcome measure for life participation in patients receiving PD. Feasibility, including length of time to complete and flexible mode of delivery, are important to allow implementation in all trials that include patients receiving PD.
AB - Background: Life participation is an outcome of critical importance to patients receiving peritoneal dialysis (PD). However, there is no widely accepted or validated tool for measuring life participation in patients receiving PD. Methods: Online consensus workshop to identify the essential characteristics of life participation as a core outcome, with the goal of establishing a patient-reported outcome measure for use in all trials in patients receiving PD. Thematic analysis of transcripts was performed. Results: Fifty-five participants, including 17 patients and caregivers, from 15 countries convened via online videoconference. Four themes were identified: reconfiguring expectations of daily living (accepting day-to-day fluctuation as the norm, shifting thresholds of acceptability, preserving gains in flexibility and freedom), ensuring broad applicability and interpretability (establishing cross-cultural relevance, incorporating valued activities, distinguishing unmodifiable barriers to life participation), capturing transitions between modalities and how they affect life participation (responsive to trajectory towards stable, reflecting changes with dialysis transitions) and maximising feasibility of implementation (reducing completion burden, administrable with ease and flexibility). Conclusions: There is a need for a validated, generalisable outcome measure for life participation in patients receiving PD. Feasibility, including length of time to complete and flexible mode of delivery, are important to allow implementation in all trials that include patients receiving PD.
KW - Core outcome measure
KW - life participation
KW - patient-reported outcome measures
KW - peritoneal dialysis
KW - quality of life
UR - http://www.scopus.com/inward/record.url?scp=85130472516&partnerID=8YFLogxK
UR - http://purl.org/au-research/grants/NHMRC/1194485
U2 - 10.1177/08968608221096560
DO - 10.1177/08968608221096560
M3 - Article
C2 - 35538693
AN - SCOPUS:85130472516
SN - 0896-8608
VL - 42
SP - 562
EP - 570
JO - PERITONEAL DIALYSIS INTERNATIONAL
JF - PERITONEAL DIALYSIS INTERNATIONAL
IS - 6
ER -