Carter Simon A, Logeman Charlotte, Howell Martin, Cattran Dan, Lightstone Liz, Bagga Arvind, Barbour Sean J, Barratt Jonathan, Boletis John, Caster Dawn J, Coppo Rosanna, Fervenza Fernando C, Floege Jürgen, Hladunewich Michelle A, Hogan Jonathan J, Kitching A Richard, Lafayette Richard A, Malvar Ana, Radhakrishnan Jai, Rovin Brad H, Scholes-Robertson Nicole, Trimarchi Hérnan, Zhang Hong, Cho Yeoungjee, Dunn Louese, Gipson Debbie S, Liew Adrian, Sautenet Benedicte, Viecelli Andrea K, Harris David, Johnson David W, Wang Angela Yee-Moon, Teixeira-Pinto Armando, Alexander Stephen I, Martin Adam, Tong Allison, Craig Jonathan C
Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
Kidney Int. 2021 Oct;100(4):881-893. doi: 10.1016/j.kint.2021.04.027. Epub 2021 May 5.
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.
在涉及肾小球疾病的试验中，与治疗决策相关的结果报告并不一致。在此，我们试图通过一项在线的国际两轮德尔菲英语调查，建立一套基于共识的极为重要的结果集，以便在未来所有试验中进行报告。为了制定此结果集，患有肾小球疾病的患者、护理人员以及18岁及以上的健康专业人员使用李克特量表和最佳-最差量表对各项结果的重要性进行评分。评估了绝对重要性和相对重要性，并对评论进行了主题分析。在完成第一轮调查的1198名参与者中，734名是患者/护理人员，464名是来自59个国家的医疗保健专业人员。在完成第二轮调查的700名参与者中，412名是患者/护理人员，288名是医疗保健专业人员。透析或移植需求、肾功能、死亡、心血管疾病、缓解-复发和生活参与度是患者/护理人员和医疗保健专业人员认为最重要的结果。患者/护理人员对患者报告的结果评分更高，而医疗保健专业人员对住院、死亡和缓解/复发评分更高。四个主题解释了他们确定优先事项的原因：直面死亡和加剧的痛苦、关注肾小球疾病的特定目标、保持生活意义以及促进自我管理。因此，希望在所有涉及肾小球疾病的试验中一致报告这些极为重要的结果，以改善以患者为中心的决策。
