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A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment.
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.
Afiliación
  • van Teunenbroek KC; Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands. k.c.vanteunenbroek@prinsesmaximacentrum.nl.
  • Mulder RL; Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
  • Ahout IML; Department of Pediatrics, Amalia Children's Hospital, Radboud University Medical Center, Nijmegen, the Netherlands.
  • Bindels-de Heus KGCB; Department of Pediatrics, Erasmus Medical Center, Sophia Children's Hospital, Rotterdam, the Netherlands.
  • Delsman-van Gelder CM; Department of Pediatrics and Neonatology, Máxima Medical Center, Veldhoven, the Netherlands.
  • Galimont-Collen AFS; Department of Dermatology, Bravis Hospital, Roosendaal, the Netherlands.
  • de Groot MAR; Emma Palliative Care Team, Emma Children's Hospital, Amsterdam University Medical Centre (UMC), Amsterdam, the Netherlands.
  • Heitink-Polle KMJ; Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
  • Looijestijn J; Department of Pediatrics, Beatrix Children's Hospital, University Medical Centre Groningen, University of Groningen, Groningen, the Netherlands.
  • Mensink MO; Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
  • Mulder S; Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
  • Schieving JH; Wilhelmina Children's Hospital, University Medical Centre Utrecht, Utrecht, the Netherlands.
  • Schouten-van Meeteren AYN; Department of Pediatric Neurology, Radboud University Medical Center, Nijmegen, the Netherlands.
  • Verheijden JMA; Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
  • Rippen H; Dutch Knowledge Centre for Children's Palliative Care, Utrecht, the Netherlands.
  • Borggreve BCM; Stichting Kind en Ziekenhuis, Utrecht, the Netherlands.
  • Kremer LCM; the Netherlands Comprehensive Cancer Organization (IKNL), Utrecht, the Netherlands.
  • Verhagen AAE; Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
  • Michiels EMC; Wilhelmina Children's Hospital, University Medical Centre Utrecht, Utrecht, the Netherlands.
BMC Palliat Care ; 23(1): 72, 2024 Mar 13.
Article en En | MEDLINE | ID: mdl-38481215
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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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Cuidados Paliativos / Pediatría Límite: Child / Humans País/Región como asunto: Europa Idioma: En Revista: BMC Palliat Care Año: 2024 Tipo del documento: Article País de afiliación: Países Bajos Pais de publicación: Reino Unido

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Cuidados Paliativos / Pediatría Límite: Child / Humans País/Región como asunto: Europa Idioma: En Revista: BMC Palliat Care Año: 2024 Tipo del documento: Article País de afiliación: Países Bajos Pais de publicación: Reino Unido