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Abstract：
BACKGROUND: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs.
OBJECTIVE: To define consensus norms for palliative care of people with intellectual disabilities in Europe.
METHODS: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version.
METHODS: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members\' networks.
RESULTS: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents\' comments, several items were modified and one item was deleted.
CONCLUSIONS: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.
OBJECTIVE: To define consensus norms for palliative care of people with intellectual disabilities in Europe.
METHODS: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version.
METHODS: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members\' networks.
RESULTS: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents\' comments, several items were modified and one item was deleted.
CONCLUSIONS: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.
摘要：
背景：智障人士经常面临独特的挑战，使其更难以满足姑息治疗的需求。
目的：定义欧洲智障人士姑息治疗的共识规范。
方法：Delphi研究分为四轮：（1）由来自七个欧洲国家的12名专家组成的工作组起草了规范，基于现有的经验知识和区域/国家指南；(2)使用在线调查，来自18个欧洲国家的34名专家评估了准则草案，提供反馈并在其专业网络中分发调查。明确定义了共识标准；（3）工作组进行了修改和建议；（4）欧洲姑息治疗协会审查并批准了最终版本。
方法：工作组成员：通过国际网络战略确定。专家小组:通过工作组成员网络确定的目的样本。
结果：来自15个欧洲国家的80名专家在以下13个规范中评估了52个项目：访问公平性，通信,认识到姑息治疗的必要性，总需求评估，症状管理,临终决策，涉及那些重要的人，合作,对家庭/照顾者的支持，为死亡做准备,支持丧亲,教育/培训和开发/管理服务。没有一个项目得分低于86%，没有必要再进行一轮。鉴于受访者的评论，修改了几个项目，删除了一个项目。
结论：本白皮书为临床实践提供了第一份指导，基于证据和欧洲共识，与智障人士姑息治疗有关的政策和研究，为政策和实践的变化设定基准。
目的：定义欧洲智障人士姑息治疗的共识规范。
方法：Delphi研究分为四轮：（1）由来自七个欧洲国家的12名专家组成的工作组起草了规范，基于现有的经验知识和区域/国家指南；(2)使用在线调查，来自18个欧洲国家的34名专家评估了准则草案，提供反馈并在其专业网络中分发调查。明确定义了共识标准；（3）工作组进行了修改和建议；（4）欧洲姑息治疗协会审查并批准了最终版本。
方法：工作组成员：通过国际网络战略确定。专家小组:通过工作组成员网络确定的目的样本。
结果：来自15个欧洲国家的80名专家在以下13个规范中评估了52个项目：访问公平性，通信,认识到姑息治疗的必要性，总需求评估，症状管理,临终决策，涉及那些重要的人，合作,对家庭/照顾者的支持，为死亡做准备,支持丧亲,教育/培训和开发/管理服务。没有一个项目得分低于86%，没有必要再进行一轮。鉴于受访者的评论，修改了几个项目，删除了一个项目。
结论：本白皮书为临床实践提供了第一份指导，基于证据和欧洲共识，与智障人士姑息治疗有关的政策和研究，为政策和实践的变化设定基准。
