Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Mar 13;23(1):72.
doi: 10.1186/s12904-024-01367-w.

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

Kim C van Teunenbroek  1 , Renée L Mulder  2 , Inge M L Ahout  3 , Karen G C B Bindels-de Heus  4 , Catharina M Delsman-van Gelder  5 , Annemie F S Galimont-Collen  6 , Marinka A R de Groot  7 , Katja M J Heitink-Polle  2 , Jeffry Looijestijn  8 , Maarten O Mensink  2 , Selma Mulder  2   9 , Jolanda H Schieving  10 , Antoinette Y N Schouten-van Meeteren  2 , Johannes M A Verheijden  11 , Hester Rippen  12 , Brigitt C M Borggreve  13 , Leontien C M Kremer  2   9   14 , A A Eduard Verhagen #  8 , Erna M C Michiels #  2 ; working groups symptom treatment and refractory symptom treatment of the Dutch paediatric palliative care guideline
Collaborators, Affiliations

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

Kim C van Teunenbroek et al. BMC Palliat Care. .

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.

Keywords: Clinical practice guideline; Evidence-based medicine; Paediatric palliative care; Symptom treatment.

PubMed Disclaimer

Conflict of interest statement

The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Number and strength of recommendations on symptom treatment in paediatric palliative care a It was not possible to formulate a recommendation due to insufficient evidence and lack of consensus among experts
See this image and copyright information in PMC

References

    1. Connor SR, Downing J, Marston J. Estimating the global need for palliative care for children: a cross-sectional analysis. J Pain Symptom Manage. 2017;53(2):171–177. doi: 10.1016/j.jpainsymman.2016.08.020. - DOI - PubMed
    1. Worldwide Hospice Palliative Care Alliance . Global Atlas of Palliative Care. London: Worldwide Hospice Palliative Care Alliance; 2020.
    1. Kenniscentrum kinderpalliatieve zorg. Wat is kinderpalliatieve zorg? 2022. Updated 2022, December 1; cited 2023, October 29. Available from: https://kinderpalliatief.nl/over-kinderpalliatieve-zorg/wat-is-kinderpal....
    1. Vallianatos S, Huizinga CSM, Schuiling-Otten MA, Schouten-van Meeteren AYN, Kremer LCM, Verhagen AAE. Development of the Dutch structure for integrated children’s palliative care. Children (Basel) 2021;8(9):741. - PMC - PubMed
    1. Centraal Bureau voor Statistiek. Overledenen; Doodsoorzaak (uitgebreide lijst), leeftijd, Geslacht: Statline; 2022. Updated 2022, December 20; cited 2023, February 22. Available from: https://opendata.cbs.nl/statline/#/CBS/nl/dataset/7052_95/table?ts=16629....

Publication types