Abstract：
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.
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.
Fifty-six 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).
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.
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.
Fifty-six 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).
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.
摘要：
生活参与对接受腹膜透析（PD）的患者至关重要。然而,在接受PD的患者中,目前还没有被广泛接受或验证的测量生活参与率的工具.
在线共识研讨会，将生活参与的基本特征确定为核心成果，目的是建立患者报告的结局指标，用于接受PD的患者的所有试验。进行了转录本的主题分析。
56名参与者,包括17名患者和护理人员，来自15个国家的在线视频会议。确定了四个主题：重新配置日常生活的期望（接受日常波动作为常态，改变可接受性的阈值，保留灵活性和自由的收益)，确保广泛的适用性和可解释性(建立跨文化相关性，纳入有价值的活动，区分生活参与的不可修改的障碍)，捕捉模式之间的转变以及它们如何影响生活参与(响应于走向稳定的轨迹，反映透析过渡的变化)和最大限度地提高实施的可行性(减少完成负担，易于管理和灵活)。
需要经过验证的，接受PD患者生活参与的一般结果测量。可行性,包括完成的时间长度和灵活的交付模式，重要的是允许在所有包括接受PD患者的试验中实施。
在线共识研讨会，将生活参与的基本特征确定为核心成果，目的是建立患者报告的结局指标，用于接受PD的患者的所有试验。进行了转录本的主题分析。
56名参与者,包括17名患者和护理人员，来自15个国家的在线视频会议。确定了四个主题：重新配置日常生活的期望（接受日常波动作为常态，改变可接受性的阈值，保留灵活性和自由的收益)，确保广泛的适用性和可解释性(建立跨文化相关性，纳入有价值的活动，区分生活参与的不可修改的障碍)，捕捉模式之间的转变以及它们如何影响生活参与(响应于走向稳定的轨迹，反映透析过渡的变化)和最大限度地提高实施的可行性(减少完成负担，易于管理和灵活)。
需要经过验证的，接受PD患者生活参与的一般结果测量。可行性,包括完成的时间长度和灵活的交付模式，重要的是允许在所有包括接受PD患者的试验中实施。
