Evidence map›Paper›PMID 39578755›Full record

SynthesisBMC palliative care2024

A Dutch paediatric palliative care guideline: a systematic review and recommendations on advance care planning and shared decision-making.

Kim C van Teunenbroek, Renée L Mulder, Dayna A M van Heel, Jurrianne C Fahner, Mirjam A de Vos-Broerse, Johannes M A Verheijden, Hester Rippen, Brigitt C M Borggreve, Leontien C M Kremer, Marijke C Kars and 3 more

Abstract readSystematic Review
In one paragraph

Synthesis in BMC palliative care, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors.

Kim C van TeunenbroekPrincess Máxima Centre for Paediatric Oncology, Utrecht, the Netherlands. k.c.vanteunenbroek@prinsesmaximacentrum.nl.
Renée L MulderPrincess Máxima Centre for Paediatric Oncology, Utrecht, the Netherlands.
Dayna A M van HeelPrincess Máxima Centre for Paediatric Oncology, Utrecht, the Netherlands.
Jurrianne C FahnerWilhelmina Children's Hospital, University Medical Centre Utrecht, Utrecht, the Netherlands.
Mirjam A de Vos-BroerseEmma Children's Hospital, department of Pediatrics, Amsterdam University Medical Centre (UMC), University of Amsterdam, Amsterdam, the Netherlands.
Johannes M A VerheijdenDutch Knowledge Centre for Children's Palliative Care, Utrecht, the Netherlands.
Hester RippenStichting Kind en Ziekenhuis, Utrecht, the Netherlands.
Brigitt C M BorggreveDutch Foundation for Palliative Care (PZNL), Utrecht, the Netherlands.
Leontien C M KremerPrincess Máxima Centre for Paediatric Oncology, Utrecht, the Netherlands.
Marijke C Kars *Center of Expertise of Palliative Care, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands.
Erna M C Michiels *Princess Máxima Centre for Paediatric Oncology, Utrecht, the Netherlands.
A A Eduard Verhagen *Beatrix Children's Hospital, University Medical Centre Groningen, Department of Pediatrics, University of Groningen, Groningen, the Netherlands.
working group advance care planning & shared decision-making of the Dutch paediatric palliative care guideline

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundIn paediatric palliative care, children with life-threatening and life-limiting conditions, their families, and their health care professionals often face difficult decisions about treatment, goals of care, and delivery of care. Advance care planning and shared decision-making are strategies that can improve quality of care by discussing goals and preferences on future care. In this paper, we provide recommendations that aim to optimise advance care planning and shared decision-making in paediatric palliative care in the Netherlands.

methodsA multidisciplinary guideline panel of 20 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on advance care planning and shared decision-making. We performed systematic literature searches to identify quantitative and qualitative evidence and used the GRADE (CERQual) methodology for appraisal of evidence. Recommendations were formulated based on quantitative and qualitative evidence, clinical expertise, and patient and family experiences.

resultsWe identified 4 RCTs that reported on the effect of advance care planning interventions in paediatric palliative care and 33 qualitative studies on barriers and facilitators to advance care planning and shared decision-making. We formulated 28 strong recommendations in close collaboration with a multidisciplinary guideline panel that provide guidance to offer advance care planning and shared decision-making, involve children and their family, and communicate information about care and treatment.

conclusionThe identified evidence and recommendations support the use of advance care planning and shared decision-making in paediatric palliative care. However, we found several knowledge gaps that should be addressed. As advance care planning and shared decision-making require specific skills and can be time-consuming, we emphasise the importance of education, adequate staffing and sufficient funding to improve integration in clinical practice. We do believe that our recommendations can be used as a starting point to develop recommendations in other countries. However, country-specific factors should be very carefully considered before applying any recommendations in other countries.

Indexed as

Advance Care PlanningDecision Making, SharedPalliative CarePediatricsChildDecision MakingHumansNetherlandsPractice Guidelines as TopicAdvance care planningEvidence-based guidelinePaediatric palliative careShared decision-making

Identifiers

PMID39578755
PMCPMC11585104

What OpenQuestion holds

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LicenceCC BY-NC-ND
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.