A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment
Authors: van Teunenbroek Kim C. , Mulder Renée L. , Ahout Inge M. L. , Bindels-de Heus Karen G. C. B. , Delsman-van Gelder Catharina M. , Galimont-Collen Annemie F. S. , de Groot Marinka A. R. , Heitink-Polle Katja M. J. , Looijestijn Jeffry , Mensink Maarten O. , Mulder Selma , Schieving Jolanda H. , Schouten-van Meeteren Antoinette Y. N. , Verheijden Johannes M. A. , Rippen Hester , Borggreve Brigitt C. M. , Kremer Leontien C. M. , Verhagen A. A. Eduard , Michiels Erna M. C. ,   on behalf of the working groups symptom treatment and refractory symptom treatment of the Dutch paediatric palliative care guideline, Alsem Mattijs W. , van den Bergh Esther M. M. , Brinkhorst Govert , Colenbrander Arno , Corel Linda , van Dijk Jennifer , Favié Laurent , Geleijns Karin , Gischler Saskia J. , ‘t Hart-Kerkhoffs Lisette , Heinen Hanneke , Joosen Cindy , Juffermans Carla C. M. , Knoester Hennie , de Koning Barbara , de Leeuw Tom , Mekelenkamp Hilda , Nieuweboer Mariska P. , Oude Ophuis Sebastianus B. J. , Pasmans Suzanne G. M. A. , van de Putte Elise M. , Räkers Emmy , Rigter Irma M. , Rohrich Christel D. , Ruijgrok Elisabeth J. , van der Schoot Kim , Siegers-Bennink Ellen , Sjouwke Henriette , Snijders-Groenendijk Tanneke , van de Vathorst Suzanne , van Vlimmeren Leo , Weenink Anne , de Weerd Willemien , Zaal-Schuller Ilse H. 
Published: March 2024

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.