背景:患有危及生命和限制生命的疾病的儿童可能由于多种痛苦症状而经历高水平的痛苦,这些症状导致生活质量差,并增加其家庭成员长期痛苦的风险。所有这些儿童及其家庭都需要高质量的症状治疗,在生命的尽头更是如此。在本文中,我们为儿科姑息治疗患者的症状治疗提供循证建议,以优化护理.
方法:建立了一个由56名儿科姑息治疗专家和9名(失去亲人)父母组成的多学科小组,以制定有关儿科姑息治疗中症状治疗的建议,包括焦虑和抑郁。谵妄,呼吸困难,血液学症状,咳嗽,皮肤投诉,恶心和呕吐,神经症状,疼痛,死亡拨浪鼓,疲劳,儿科姑息镇静和放弃水合和营养。建议是基于系统文献检索的证据,其他文献来源(如指南),临床专业知识,以及耐心和家庭价值观。我们使用等级方法进行证据评估。父母被纳入指南小组,以确保患者和家庭价值观的代表性。
结果:我们共纳入了18项研究,这些研究报告了特定(非)药物干预措施在儿科姑息治疗中治疗症状的效果。其中一些干预措施在症状缓解方面显着改善。该证据只能(部分)回答27个临床问题中的8个。我们包括29个指南和两个教科书作为补充文献来处理缺乏证据。总的来说,我们根据证据制定了221项关于儿科姑息治疗中症状治疗的建议,其他文献,临床专业知识,以及耐心和家庭价值观。
结论:尽管与症状相关的儿科姑息治疗干预措施的现有证据有所增加,儿科姑息治疗的证据仍然很少。我们敦促国际多学科多机构合作,以进行高质量的研究,并为全世界所有儿童的姑息治疗中症状缓解的优化做出贡献。
BACKGROUND: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care.
METHODS: A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values.
RESULTS: We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values.
CONCLUSIONS: Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide.