A Dutch paediatric palliative care guideline : a systematic review and evidence-based recommendations for symptom treatment
© 2024. The Author(s)..
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.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2024 |
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| Erschienen: |
2024 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:23 |
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| Enthalten in: |
BMC palliative care - 23(2024), 1 vom: 13. März, Seite 72 |
| Sprache: |
Englisch |
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| Links: |
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| Themen: |
Clinical practice guideline |
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| Anmerkungen: |
Date Completed 15.03.2024 Date Revised 16.03.2024 published: Electronic Citation Status MEDLINE |
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| doi: |
10.1186/s12904-024-01367-w |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| PPN (Katalog-ID): |
NLM369709098 |
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| 100 | 1 | |a van Teunenbroek, Kim C |e verfasserin |4 aut | |
| 245 | 1 | 2 | |a A Dutch paediatric palliative care guideline |b a systematic review and evidence-based recommendations for symptom treatment |
| 264 | 1 | |c 2024 | |
| 336 | |a Text |b txt |2 rdacontent | ||
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| 500 | |a Date Completed 15.03.2024 | ||
| 500 | |a Date Revised 16.03.2024 | ||
| 500 | |a published: Electronic | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a © 2024. The Author(s). | ||
| 520 | |a 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 | ||
| 520 | |a 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 | ||
| 520 | |a 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 | ||
| 520 | |a 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 | ||
| 650 | 4 | |a Systematic Review | |
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a Clinical practice guideline | |
| 650 | 4 | |a Evidence-based medicine | |
| 650 | 4 | |a Paediatric palliative care | |
| 650 | 4 | |a Symptom treatment | |
| 700 | 1 | |a Mulder, Renée L |e verfasserin |4 aut | |
| 700 | 1 | |a Ahout, Inge M L |e verfasserin |4 aut | |
| 700 | 1 | |a Bindels-de Heus, Karen G C B |e verfasserin |4 aut | |
| 700 | 1 | |a Delsman-van Gelder, Catharina M |e verfasserin |4 aut | |
| 700 | 1 | |a Galimont-Collen, Annemie F S |e verfasserin |4 aut | |
| 700 | 1 | |a de Groot, Marinka A R |e verfasserin |4 aut | |
| 700 | 1 | |a Heitink-Polle, Katja M J |e verfasserin |4 aut | |
| 700 | 1 | |a Looijestijn, Jeffry |e verfasserin |4 aut | |
| 700 | 1 | |a Mensink, Maarten O |e verfasserin |4 aut | |
| 700 | 1 | |a Mulder, Selma |e verfasserin |4 aut | |
| 700 | 1 | |a Schieving, Jolanda H |e verfasserin |4 aut | |
| 700 | 1 | |a Schouten-van Meeteren, Antoinette Y N |e verfasserin |4 aut | |
| 700 | 1 | |a Verheijden, Johannes M A |e verfasserin |4 aut | |
| 700 | 1 | |a Rippen, Hester |e verfasserin |4 aut | |
| 700 | 1 | |a Borggreve, Brigitt C M |e verfasserin |4 aut | |
| 700 | 1 | |a Kremer, Leontien C M |e verfasserin |4 aut | |
| 700 | 1 | |a Verhagen, A A Eduard |e verfasserin |4 aut | |
| 700 | 1 | |a Michiels, Erna M C |e verfasserin |4 aut | |
| 700 | 0 | |a working groups symptom treatment and refractory symptom treatment of the Dutch paediatric palliative care guideline |e verfasserin |4 aut | |
| 700 | 1 | |a Alsem, Mattijs W |e investigator |4 oth | |
| 700 | 1 | |a van den Bergh, Esther M M |e investigator |4 oth | |
| 700 | 1 | |a Brinkhorst, Govert |e investigator |4 oth | |
| 700 | 1 | |a Colenbrander, Arno |e investigator |4 oth | |
| 700 | 1 | |a Corel, Linda |e investigator |4 oth | |
| 700 | 1 | |a van Dijk, Jennifer |e investigator |4 oth | |
| 700 | 1 | |a Favié, Laurent |e investigator |4 oth | |
| 700 | 1 | |a Geleijns, Karin |e investigator |4 oth | |
| 700 | 1 | |a Gischler, Saskia J |e investigator |4 oth | |
| 700 | 1 | |a 't Hart-Kerkhoffs, Lisette |e investigator |4 oth | |
| 700 | 1 | |a Heinen, Hanneke |e investigator |4 oth | |
| 700 | 1 | |a Joosen, Cindy |e investigator |4 oth | |
| 700 | 1 | |a Juffermans, Carla C M |e investigator |4 oth | |
| 700 | 1 | |a Knoester, Hennie |e investigator |4 oth | |
| 700 | 1 | |a de Koning, Barbara |e investigator |4 oth | |
| 700 | 1 | |a de Leeuw, Tom |e investigator |4 oth | |
| 700 | 1 | |a Mekelenkamp, Hilda |e investigator |4 oth | |
| 700 | 1 | |a Nieuweboer, Mariska P |e investigator |4 oth | |
| 700 | 1 | |a Oude Ophuis, Sebastianus B J |e investigator |4 oth | |
| 700 | 1 | |a Pasmans, Suzanne G M A |e investigator |4 oth | |
| 700 | 1 | |a van de Putte, Elise M |e investigator |4 oth | |
| 700 | 1 | |a Räkers, Emmy |e investigator |4 oth | |
| 700 | 1 | |a Rigter, Irma M |e investigator |4 oth | |
| 700 | 1 | |a Rohrich, Christel D |e investigator |4 oth | |
| 700 | 1 | |a Ruijgrok, Elisabeth J |e investigator |4 oth | |
| 700 | 1 | |a van der Schoot, Kim |e investigator |4 oth | |
| 700 | 1 | |a Siegers-Bennink, Ellen |e investigator |4 oth | |
| 700 | 1 | |a Sjouwke, Henriette |e investigator |4 oth | |
| 700 | 1 | |a Snijders-Groenendijk, Tanneke |e investigator |4 oth | |
| 700 | 1 | |a van de Vathorst, Suzanne |e investigator |4 oth | |
| 700 | 1 | |a van Vlimmeren, Leo |e investigator |4 oth | |
| 700 | 1 | |a Weenink, Anne |e investigator |4 oth | |
| 700 | 1 | |a de Weerd, Willemien |e investigator |4 oth | |
| 700 | 1 | |a Zaal-Schuller, Ilse H |e investigator |4 oth | |
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