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

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 f...

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Main Authors: Kim C. van Teunenbroek, Renée L. Mulder, Inge M. L. Ahout, Karen G. C. B. Bindels-de Heus, Catharina M. Delsman-van Gelder, Annemie F. S. Galimont-Collen, Marinka A. R. de Groot, Katja M. J. Heitink-Polle, Jeffry Looijestijn, Maarten O. Mensink, Selma Mulder, Jolanda H. Schieving, Antoinette Y. N. Schouten-van Meeteren, Johannes M. A. Verheijden, Hester Rippen, Brigitt C. M. Borggreve, Leontien C. M. Kremer, A. A. Eduard Verhagen, Erna M. C. Michiels, on behalf of the working groups symptom treatment and refractory symptom treatment of the Dutch paediatric palliative care guideline
Format: Article
Language:English
Published: BMC 2024-03-01
Series:BMC Palliative Care
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Online Access:https://doi.org/10.1186/s12904-024-01367-w
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author Kim C. van Teunenbroek
Renée L. Mulder
Inge M. L. Ahout
Karen G. C. B. Bindels-de Heus
Catharina M. Delsman-van Gelder
Annemie F. S. Galimont-Collen
Marinka A. R. de Groot
Katja M. J. Heitink-Polle
Jeffry Looijestijn
Maarten O. Mensink
Selma Mulder
Jolanda H. Schieving
Antoinette Y. N. Schouten-van Meeteren
Johannes M. A. Verheijden
Hester Rippen
Brigitt C. M. Borggreve
Leontien C. M. Kremer
A. A. Eduard Verhagen
Erna M. C. Michiels
on behalf of the working groups symptom treatment and refractory symptom treatment of the Dutch paediatric palliative care guideline
author_facet Kim C. van Teunenbroek
Renée L. Mulder
Inge M. L. Ahout
Karen G. C. B. Bindels-de Heus
Catharina M. Delsman-van Gelder
Annemie F. S. Galimont-Collen
Marinka A. R. de Groot
Katja M. J. Heitink-Polle
Jeffry Looijestijn
Maarten O. Mensink
Selma Mulder
Jolanda H. Schieving
Antoinette Y. N. Schouten-van Meeteren
Johannes M. A. Verheijden
Hester Rippen
Brigitt C. M. Borggreve
Leontien C. M. Kremer
A. A. Eduard Verhagen
Erna M. C. Michiels
on behalf of the working groups symptom treatment and refractory symptom treatment of the Dutch paediatric palliative care guideline
author_sort Kim C. van Teunenbroek
collection DOAJ
description 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.
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spelling doaj.art-c54bc563965e48718e280a2037caeec72024-03-17T12:42:02ZengBMCBMC Palliative Care1472-684X2024-03-0123112010.1186/s12904-024-01367-wA Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatmentKim C. van Teunenbroek0Renée L. Mulder1Inge M. L. Ahout2Karen G. C. B. Bindels-de Heus3Catharina M. Delsman-van Gelder4Annemie F. S. Galimont-Collen5Marinka A. R. de Groot6Katja M. J. Heitink-Polle7Jeffry Looijestijn8Maarten O. Mensink9Selma Mulder10Jolanda H. Schieving11Antoinette Y. N. Schouten-van Meeteren12Johannes M. A. Verheijden13Hester Rippen14Brigitt C. M. Borggreve15Leontien C. M. Kremer16A. A. Eduard Verhagen17Erna M. C. Michiels18on behalf of the working groups symptom treatment and refractory symptom treatment of the Dutch paediatric palliative care guidelinePrincess Máxima Center for Pediatric OncologyPrincess Máxima Center for Pediatric OncologyDepartment of Pediatrics, Amalia Children’s Hospital, Radboud University Medical CenterDepartment of Pediatrics, Erasmus Medical Center, Sophia Children’s HospitalDepartment of Pediatrics and Neonatology, Máxima Medical CenterDepartment of Dermatology, Bravis HospitalEmma Palliative Care Team, Emma Children’s Hospital, Amsterdam University Medical Centre (UMC)Princess Máxima Center for Pediatric OncologyDepartment of Pediatrics, Beatrix Children’s Hospital, University Medical Centre Groningen, University of GroningenPrincess Máxima Center for Pediatric OncologyPrincess Máxima Center for Pediatric OncologyDepartment of Pediatric Neurology, Radboud University Medical CenterPrincess Máxima Center for Pediatric OncologyDutch Knowledge Centre for Children’s Palliative CareStichting Kind en Ziekenhuisthe Netherlands Comprehensive Cancer Organization (IKNL)Princess Máxima Center for Pediatric OncologyDepartment of Pediatrics, Beatrix Children’s Hospital, University Medical Centre Groningen, University of GroningenPrincess Máxima Center for Pediatric OncologyAbstract 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.https://doi.org/10.1186/s12904-024-01367-wClinical practice guidelineEvidence-based medicinePaediatric palliative careSymptom treatment
spellingShingle Kim C. van Teunenbroek
Renée L. Mulder
Inge M. L. Ahout
Karen G. C. B. Bindels-de Heus
Catharina M. Delsman-van Gelder
Annemie F. S. Galimont-Collen
Marinka A. R. de Groot
Katja M. J. Heitink-Polle
Jeffry Looijestijn
Maarten O. Mensink
Selma Mulder
Jolanda H. Schieving
Antoinette Y. N. Schouten-van Meeteren
Johannes M. A. Verheijden
Hester Rippen
Brigitt C. M. Borggreve
Leontien C. M. Kremer
A. A. Eduard Verhagen
Erna M. C. Michiels
on behalf of the working groups symptom treatment and refractory symptom treatment of the Dutch paediatric palliative care guideline
A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment
BMC Palliative Care
Clinical practice guideline
Evidence-based medicine
Paediatric palliative care
Symptom treatment
title A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment
title_full A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment
title_fullStr A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment
title_full_unstemmed A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment
title_short A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment
title_sort dutch paediatric palliative care guideline a systematic review and evidence based recommendations for symptom treatment
topic Clinical practice guideline
Evidence-based medicine
Paediatric palliative care
Symptom treatment
url https://doi.org/10.1186/s12904-024-01367-w
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