A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment

Dutch paediatric palliative care guideline group · 2024 · Europe

Source and licence

Authors
Kim C van Teunenbroek, Renée L Mulder, Inge M L Ahout et al.
Title
A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment
Journal
BMC Palliative Care, 2024
Licence
CC BY 4.0
Changes
Verbatim excerpts; formatting adapted

Full text retrieved 2026-10-27 from Europe PMC · PMC10935792

Licence statement of the original publication

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Recommendations

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Abstract

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.

Conclusion: 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.

Supplementary Information: The online version contains supplementary material available at 10.1186/s12904-024-01367-w.

Contents of the original publication

The section headings of the original.

  • Background
  • Methods
  • Scope
  • Multidisciplinary guideline development panel
  • Representation of patients and their families
  • Formulation of clinical questions
  • Search strategy and selection criteria
  • Summary and appraisal of evidence
  • Translating evidence into recommendations
  • Results
  • Identification of evidence and additional literature
  • Translating evidence into recommendations
  • Discussion
  • Contributor Information

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