Palliative care for children: methodology for the development of a national clinical practice guideline
Authors: van Teunenbroek Kim C. , Kremer Leontien C. M. , Verhagen A. A. Eduard , Verheijden Johannes M. A. , Rippen Hester , Borggreve Brigitt C. M. , Michiels Erna M. C. , Mulder Renée L. ,   on behalf of the Dutch Paediatric Palliative Care Guideline Panel, Ahout Inge M. L. , Alsem Mattijs W. , van den Bergh Esther M. M. , Berkhout Loes , Bindels-de Heus Karin G. C. B. , Brinkhorst Govert , Colenbrander Arno , Corel Linda , Delsman-van Gelder Catharina M. , van Dijk Jennifer , Fahner Jurrianne C. , Falkenburg Jeannette L. , Favié Laurent , Galimont-Collen Annemie F. S. , Geleijns Karin , Geurtzen Rosa , Gijsbertsen-Kool Annelies , Gischler Saskia J. , de Groot Marinka A. R. , Haag Anne , Hart-Kerkhoffs Lisette ‘t , Heinen Hanneke , Heitink-Polle Katja M. J. , Honig-Mazer Petra , Huizinga Carolien S. M. , Joosen Cindy , Juffermans Carla C. M. , Kars Marijke C. , Kisman Karolien , Knoester Hennie , Kochen Eline M. , de Koning Barbara , de Leeuw Tom , Looijestijn Jeffry , Mekelenkamp Hilda , Mensink Maarten O. , Mulder Selma , Nieuweboer Mariska P. , Oude Ophuis Sebastianus B. J. , Pasmans Suzanne G. M. A. , van de Putte Elise M. , Räkers Emmy , Rietveld Liesbeth , Rigter Irma M. , Rohrich Christel D. , van Roosmalen Tanja , Ruijgrok Elisabeth J. , Schieving Jolanda H. , van der Schoot Kim , Schouten-van Meeteren Antoinette Y. N. , Siegers-Bennink Ellen , Sjouwke Henriette , Snijders-Groenendijk Tanneke , van Stiphout Mara , van de Vathorst Suzanne , van Vlimmeren Leo , de Vos Mirjam A. , van Wageningen Nellie , Weenink Anne , de Weerd Willemien , Zaal-Schuller Ilse H. 
Published: December 2023

Background

Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence.

Methods

The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence.

Results

The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence.

Conclusions

The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.