The Dutch Multidisciplinary Clinical Practice Guideline for Pediatric Palliative Care

The Dutch Multidisciplinary Clinical Practice Guideline for Pediatric Palliative Care

Van Teunenbroek K; Mulder R; Kremer L; Borggreve B; Verhagen AAE; Michiels E

Pediatric Blood and Cancer

2022

Netherlands; advance care planning; bereavement support; child; clinical practice; conference abstract; controlled study; female; human; male; palliative therapy; practice guideline; randomized controlled trial (topic); shared decision making; systematic review

Background and Aims: Pediatric palliative care is concerned with relief of suffering of all children with a life threatening disease and their families in all domains (physical, psychological, social and spiritual). This includes pediatric oncology patients. In 2013, the first Dutch multidisciplinary clinical practice guideline for pediatric palliative care was developed, providing recommendations on relief of symptoms, decision-making and organization of care. Evaluation of the guideline revealed a need for revision of the recommendations and inclusion of new recommendations on E-Poster Topics such as psychosocial and bereavement care, advance care planning and shared decision-making. The aim of this research is to improve provision of pediatric palliative care in the Netherlands by developing an updated version of the Dutch Pediatric Palliative Care guideline. Method(s): A multidisciplinary guideline panel reviewed literature on pediatric palliative care by systematic literature searches. The GRADE methodology was used to grade the evidence and to formulate recommendations. Recommendations were formulated and refined based on the evidence, clinical expertise, and patient values. For those E-Poster Topics where no evidence was available, recommendations were based on other guidelines, clinical expertise and patient values. Result(s): The updated systematic literature search identified 14 randomized controlled trials and 15 systematic reviews that prompted refinement of recommendations. For 27 out of 42 formulated clinical questions, no evidence was found. This revealed major gaps in knowledge on pediatric palliative care. Based on evidence (if available), clinical expertise and patient values, more than 100 recommendations on various E-Poster Topics in pediatric palliative care were generated. Conclusion(s): The updated guideline uses existing evidence and national expertise to develop transparent and easy-to-use recommendations to facilitate provision of high quality pediatric palliative care. The guideline promotes interdisciplinary collaboration and opens opportunities for international research into the identified knowledge gaps to further improve pediatric palliative care.

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December List 2022