PDF(Pubmed)
Abstract：
BACKGROUND: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence.
METHODS: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence.
RESULTS: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence.
CONCLUSIONS: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.
METHODS: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence.
RESULTS: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence.
CONCLUSIONS: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.
摘要：
背景：为危及生命或限制生命的儿童及其家庭提供儿科姑息治疗通常很复杂。指南可以支持专业人员提供高质量的护理。利益相关者表示有必要用新的科学文献和新的主题更新荷兰的第一个儿科姑息治疗指南。本文概述了用于修订荷兰儿科姑息治疗指南的方法，并简要介绍了已确定的证据。
方法：修订后的儿科姑息治疗指南是由72名儿科姑息治疗专家和9名患有危及生命或限制生命的儿童（失去亲人）父母组成的多学科指南小组制定的。该指南涵盖了与（难治性）症状治疗有关的多个主题，提前护理计划和共同决策，护理组织，社会心理护理,损失和丧亲。我们建立了六个主要工作组，制定了38个临床问题，我们通过更新两个现有的系统文献检索来确定这些问题的证据。等级(CERQual)方法用于评估证据。此外，我们搜索了其他文献,如现有指南和教科书,以解决缺乏证据的问题.
结果：两次系统文献检索共产生了29项关于儿科姑息治疗干预措施的RCT或RCT的系统评价，以及22项关于预先护理计划和共同决策的障碍和促进因素的定性研究。我们确定了38个临床问题中的14个的证据。此外，我们能够选择更多的文献(29个指南，两本教科书,和10个系统评价)来处理缺乏证据的问题。
结论：修订后的荷兰儿科姑息治疗指南涉及许多主题。然而,有有限的证据可以作为建议的基础。我们的方法将结合科学文献中现有的证据，其他文献，专业知识,并对患者及其家属的观点提供建议。
方法：修订后的儿科姑息治疗指南是由72名儿科姑息治疗专家和9名患有危及生命或限制生命的儿童（失去亲人）父母组成的多学科指南小组制定的。该指南涵盖了与（难治性）症状治疗有关的多个主题，提前护理计划和共同决策，护理组织，社会心理护理,损失和丧亲。我们建立了六个主要工作组，制定了38个临床问题，我们通过更新两个现有的系统文献检索来确定这些问题的证据。等级(CERQual)方法用于评估证据。此外，我们搜索了其他文献,如现有指南和教科书,以解决缺乏证据的问题.
结果：两次系统文献检索共产生了29项关于儿科姑息治疗干预措施的RCT或RCT的系统评价，以及22项关于预先护理计划和共同决策的障碍和促进因素的定性研究。我们确定了38个临床问题中的14个的证据。此外，我们能够选择更多的文献(29个指南，两本教科书,和10个系统评价)来处理缺乏证据的问题。
结论：修订后的荷兰儿科姑息治疗指南涉及许多主题。然而,有有限的证据可以作为建议的基础。我们的方法将结合科学文献中现有的证据，其他文献，专业知识,并对患者及其家属的观点提供建议。
