Abstract：
The inconsistency in outcomes reported and lack of patient-reported outcomes across trials in children with chronic kidney disease (CKD) limits shared decision making. As part of the Standardized Outcomes in Nephrology (SONG)-Kids initiative, we aimed to generate a consensus-based prioritized list of critically important outcomes to be reported in all trials in children with CKD.
An online 2-round Delphi survey in English, French, and Hindi languages.
Patients (aged 8-21 years), caregivers/family, and health care professionals (HCPs) rated the importance of outcomes using a 9-point Likert scale (7-9 indicating critical importance) and completed a Best-Worst Scale.
We assessed the absolute and relative importance of outcomes. Comments were analyzed thematically.
557 participants (72 [13%] patients, 132 [24%] caregivers, and 353 [63%] HCPs) from 48 countries completed round 1 and 312 (56%) participants (28 [40%] patients, 64 [46%] caregivers, and 220 [56%] HCPs) completed round 2. Five outcomes were common in the top 10 for each group: mortality, kidney function, life participation, blood pressure, and infection. Caregivers and HCPs rated cardiovascular disease higher than patients. Patients gave lower ratings to all outcomes compared with caregivers/HCPs except they rated life participation (round 2 mean difference, 0.1), academic performance (0.1), mobility (0.4), and ability to travel (0.4) higher than caregivers and rated ability to travel (0.4) higher than HCPs. We identified 3 themes: alleviating disease and treatment burden, focusing on the whole child, and resolving fluctuating and conflicting goals.
Most participants completed the survey in English.
Mortality, life participation, kidney function, and blood pressure were consistently highly prioritized by patients, caregivers, and HCPs. Patients gave higher priority to some lifestyle-related outcomes compared with caregivers/HCPs. Establishing critically important outcomes for all trials in children with CKD may improve consistent reporting of survival, kidney health, and clinical and life impact outcomes that are meaningful for decision making.
An online 2-round Delphi survey in English, French, and Hindi languages.
Patients (aged 8-21 years), caregivers/family, and health care professionals (HCPs) rated the importance of outcomes using a 9-point Likert scale (7-9 indicating critical importance) and completed a Best-Worst Scale.
We assessed the absolute and relative importance of outcomes. Comments were analyzed thematically.
557 participants (72 [13%] patients, 132 [24%] caregivers, and 353 [63%] HCPs) from 48 countries completed round 1 and 312 (56%) participants (28 [40%] patients, 64 [46%] caregivers, and 220 [56%] HCPs) completed round 2. Five outcomes were common in the top 10 for each group: mortality, kidney function, life participation, blood pressure, and infection. Caregivers and HCPs rated cardiovascular disease higher than patients. Patients gave lower ratings to all outcomes compared with caregivers/HCPs except they rated life participation (round 2 mean difference, 0.1), academic performance (0.1), mobility (0.4), and ability to travel (0.4) higher than caregivers and rated ability to travel (0.4) higher than HCPs. We identified 3 themes: alleviating disease and treatment burden, focusing on the whole child, and resolving fluctuating and conflicting goals.
Most participants completed the survey in English.
Mortality, life participation, kidney function, and blood pressure were consistently highly prioritized by patients, caregivers, and HCPs. Patients gave higher priority to some lifestyle-related outcomes compared with caregivers/HCPs. Establishing critically important outcomes for all trials in children with CKD may improve consistent reporting of survival, kidney health, and clinical and life impact outcomes that are meaningful for decision making.
摘要：
在慢性肾脏病（CKD）儿童的试验中，结果报告的不一致和患者报告的结果缺乏限制了共同的决策。作为肾病学标准化结果（SONG）-儿童倡议的一部分，我们的目标是生成一份基于共识的优先列表,列出所有CKD儿童试验中报告的非常重要的结局.
Delphi英语在线两轮调查，法语,和印地语语言。
患者（8-21岁），看护者/家庭,和卫生保健专业人员（HCP）使用9分Likert量表（7-9表示关键重要性）评估结果的重要性，并完成了最佳最差量表。
我们评估了结果的绝对和相对重要性。对评论进行了主题分析。
557名参与者（72[13%]名患者，132[24%]护理人员，来自48个国家的353[63%]HCP)完成了第一轮和312名(56%)参与者(28名[40%]患者，64名[46%]护理人员，和220[56%]HCP）完成了第2轮。每组前10名共有5个结果：死亡率，肾功能,生活参与,血压,和感染。护理人员和HCP对心血管疾病的评价高于患者。与照顾者/HCP相比，患者对所有结果的评分较低，除了他们对生活参与的评分（第2轮平均差异，0.1),学业成绩(0.1)，流动性（0.4），和旅行能力（0.4）高于护理人员，额定旅行能力（0.4）高于HCP。我们确定了3个主题：减轻疾病和治疗负担，专注于整个孩子，解决波动和冲突的目标。
大多数参与者用英语完成了调查。
死亡率,生活参与,肾功能,患者一直高度重视血压，看护者,和HCPs。与护理人员/HCP相比，患者对一些与生活方式相关的结局给予更高的重视。为CKD儿童的所有试验建立至关重要的结果可能会改善生存率报告的一致性。肾脏健康，以及对决策有意义的临床和生活影响结果。
Delphi英语在线两轮调查，法语,和印地语语言。
患者（8-21岁），看护者/家庭,和卫生保健专业人员（HCP）使用9分Likert量表（7-9表示关键重要性）评估结果的重要性，并完成了最佳最差量表。
我们评估了结果的绝对和相对重要性。对评论进行了主题分析。
557名参与者（72[13%]名患者，132[24%]护理人员，来自48个国家的353[63%]HCP)完成了第一轮和312名(56%)参与者(28名[40%]患者，64名[46%]护理人员，和220[56%]HCP）完成了第2轮。每组前10名共有5个结果：死亡率，肾功能,生活参与,血压,和感染。护理人员和HCP对心血管疾病的评价高于患者。与照顾者/HCP相比，患者对所有结果的评分较低，除了他们对生活参与的评分（第2轮平均差异，0.1),学业成绩(0.1)，流动性（0.4），和旅行能力（0.4）高于护理人员，额定旅行能力（0.4）高于HCP。我们确定了3个主题：减轻疾病和治疗负担，专注于整个孩子，解决波动和冲突的目标。
大多数参与者用英语完成了调查。
死亡率,生活参与,肾功能,患者一直高度重视血压，看护者,和HCPs。与护理人员/HCP相比，患者对一些与生活方式相关的结局给予更高的重视。为CKD儿童的所有试验建立至关重要的结果可能会改善生存率报告的一致性。肾脏健康，以及对决策有意义的临床和生活影响结果。
