International project on troublesome symptoms in paediatric palliative care will focus on neuro‐irritability, dystonia and sleep disorders
Abstract
The World Health Organization describes paediatric palliative care (PPC) as the active total care of the child's body, mind and spirit and supporting their family.1 It should be established as early as possible and continued along the entire disease trajectory.2 Advances in medical care for children with lifelimiting or lifethreatening diseases mean that PPC plans can last for years and may change according to the disease progression, the child's development and the evolution of symptoms.2 The International Standards for PPC were published in 2022,2 and state that the main goal is to prevent or eradicate distressing symptoms in order to guarantee the best possible quality of life for children and their families. Children's physical symptoms should be assessed, treated and monitored according to their individual responses and their age, culture and whether their care is provided at home or in a hospital or hospice.2 There are often multiple and interrelated symptoms during child PCC, with varying intensity over time. The most common clinical symptoms include spasticity, seizures, pain, anxiety/fear, depression, asthenia, fatigue, itching, dyspnoea, diarrhoea, nausea/vomiting, confusion/ delirium, dry mouth, skin lesions and constipation.2 These are often troublesome to manage and resistant to pharmacological treatments, which are often prescribed offlabel. Their management is mainly left to individual physicians, due to the lack of standardised recommendations or scientific…
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