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A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom
Kim C van Teunenbroek1, Renée L Mulder2, Inge M L Ahout3
1Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands. k.c.vanteunenbroek@prinsesmaximacentrum.nl.
Insights
High-quality symptom management is crucial for children with life-limiting conditions. This study provides evidence-based recommendations for paediatric palliative care to improve quality of life and reduce suffering.
Area of Science:
- Palliative Care
- Symptom Management
- Paediatric Healthcare
Background:
- Children with life-limiting conditions experience significant suffering from distressing symptoms.
- Poor symptom management negatively impacts quality of life and family well-being.
- Optimizing symptom treatment is essential, particularly at the end-of-life.
Purpose of the Study:
- To develop evidence-based recommendations for symptom treatment in paediatric palliative care.
- To address a wide range of symptoms impacting children's quality of life.
- To incorporate patient and family values into clinical guidelines.
Main Methods:
- A multidisciplinary panel of 56 experts and 9 parents developed recommendations.
- Systematic literature search and GRADE methodology were used for evidence appraisal.
- Recommendations integrated evidence, clinical expertise, and patient/family values.
Main Results:
- 221 recommendations on symptom treatment were formulated.
- Included 18 studies, 29 guidelines, and 2 textbooks.
- Limited evidence partially answered 8 out of 27 clinical questions.
Conclusions:
- A significant paucity of evidence exists in paediatric palliative symptom management.
- International, multidisciplinary collaboration is needed for high-quality research.
- Optimizing symptom relief is critical for children globally.
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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