Everyday People Sing a Simple Song: Establishing a Core Outcome for Life Participation.

Everyday People Sing a Simple Song: Establishing a Core Outcome for Life Participation.
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日常生活中人们唱着一首简单的歌:建立生活参与的核心成果。

DOI:
10.1097/tp.0000000000002477
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发表时间:
2019
期刊:
影响因子:
6.2
通讯作者:
Brennan,DanielC
Brennan,DanielC
中科院分区:
医学2区
文献类型:
--
作者:
Aala,Amtul;Brennan,DanielC

文献摘要

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Several studies in transplantation have reported patient centered outcomes to help improve long-term kidney transplant recipient care, with the hope of standardizing these outcomes for all future studies. 1 These are mostly found to be short term, often inconsistent, and incomplete. There is lack of uniformity in reporting these outcomes in clinical trials, which hinders shared decision making. Physicians, caregivers, and patients have an interest in what is reported to guide treatment and develop clinic guidelines. Acknowledging this need, several consensus guidelines have been developed recently, including Clinical Data Interchange Standards Consortium 2016 and Standardized Outcomes in Nephrology—Transplantation 2016.Standardized Outcomes in Nephrology-Transplantation (SONG-Tx) Outcomes is a global initiative to develop a core outcome set for trials in kidney transplantation. 2, 3 Initiated in 2015, this was a 3-phase process; first phase was a systematic review of various clinical studies, second phase was to use a Delphi survey with an international multistakeholder panel (patients, caregivers, clinicians, researchers, policy makers, members from industry) which developed a consensus-based prioritized list of outcome domains; followed by the third phase, using a consensus workshop to review and finalize these core outcome sets. The top 10 ranked outcomes overall were kidney rejection leading to graft loss, kidney function, damage to other organs, cancer (all), diabetes, skin cancer, cardiovascular disease, infection, weight gain, and excessive appetite, and the top 5 psychosocial or physical symptoms were impact on family, depression, impact on work, gastrointestinal