Περίληψη:
Outcomes relevant to treatment decision-making are inconsistently
reported in trials involving glomerular disease. Here, we sought to
establish a consensus-derived set of critically important outcomes
designed to be reported in all future trials by using an online,
international two-round Delphi survey in English. To develop this,
patients with glomerular disease, caregivers and health professionals
aged 18 years and older rated the importance of outcomes using a Likert
scale and a Best-Worst scale. The absolute and relative importance was
assessed and comments were analyzed thematically. Of 1198 participants
who completed Round 1, 734 were patients/ caregivers while 464 were
health care professionals from 59 countries. Of 700 participants that
completed Round 2, 412 were patients/caregivers and 288 were health care
professionals. Need for dialysis or transplant, kidney function, death,
cardiovascular disease, remission-relapse and life participation were
the most important outcomes to patients/caregivers and health
professionals. Patients/ caregivers rated patient-reported outcomes
higher while health care professionals rated hospitalization, death and
remission/relapse higher. Four themes explained the reasons for their
priorities: confronting death and compounded suffering, focusing on
specific targets in glomerular disease, preserving meaning in life, and
fostering self-management. Thus, consistent reporting of these
critically important outcomes in all trials involving glomerular disease
is hoped to improve patient-centered decision-making.
Συγγραφείς:
Carter, Simon A.
Logeman, Charlotte
Howell, Martin
Cattran,
Dan
Lightstone, Liz
Bagga, Arvind
Barbour, Sean J. and
Barratt, Jonathan
Boletis, John
Caster, Dawn J.
Coppo,
Rosanna
Fervenza, Fernando C.
Floege, Jurgen
Hladunewich,
Michelle A.
Hogan, Jonathan J.
Kitching, A. Richard and
Lafayette, Richard A.
Malvar, Ana
Radhakrishnan, Jai
Rovin,
Brad H.
Scholes-Robertson, Nicole
Trimarchi, Hernan
Zhang,
Hong
Cho, Yeoungjee
Dunn, Louese
Gipson, Debbie S.
Liew,
Adrian
Sautenet, Benedicte
Viecelli, Andrea K.
Harris, David
and Johnson, David W.
Wang, Angela Yee-Moon
Teixeira-Pinto,
Armando
Alexander, Stephen I.
Martin, Adam
Tong, Allison and
Craig, Jonathan C.
