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Paediatric neuro-disability end-of-life care: symptom burden and management
  1. Carol Stephens1,
  2. Zoe Coghlan2,
  3. Louise Gibson1,3,
  4. Niamh McSweeney3,4,
  5. Olivia O'Mahony4 and
  6. Mary Jane O'Leary2,5
  1. 1Department of Paediatrics, Cork University Hospital, Cork, Ireland
  2. 2Department of Palliative Medicine, Cork University Hospital, Cork, Ireland
  3. 3Department of Paediatrics and Child Health, University College Cork, Cork, Ireland
  4. 4Department of Paediatric Neurology, Cork University Hospital, Cork, Ireland
  5. 5Department of Palliative Medicine, Marymount University Hospital & Hospice, Cork, Ireland
  1. Correspondence to Dr Carol Stephens, Department of Paediatrics, Cork University Hospital, Cork, Ireland; c.stephens552{at}

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Dear Editors,

The WHO advocates that paediatric palliative care comprises a multidisciplinary approach, beginning at the onset of disease diagnosis and carrying on throughout the illness.1 Paediatric neuro-disability and palliative care are closely intertwined. Many children with neuro-disability have complex needs, escalating at end of life (EOL). Perception and experience of symptoms can differ with varying symptom burdens depending on age and development. Management can be complicated by other non-neurological symptoms that can be non-specific and difficult to correctly identify. Poorly controlled symptoms impact quality of life, interfere with sleep, and lead to fatigue and distress. A robust team of experts is required to ensure the best care for children living and dying with neuro-disability.

We performed a retrospective single-centre observational study in Cork University Hospital, Ireland. The aim was to review symptom burden and management in children between 0 and 16 years with a background of a neuro-disability, who were referred to the palliative care team and subsequently died between 1 January 2016 and 31 May 2019. Those who died at home but had an inpatient stay within 1 month of death were included.

Twenty-nine children were referred to the service, 14 met inclusion criteria. The median age at death was 11.21 years (IQR: 4.23–15.06). Five (35.7%) died at home. …

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  • Contributors LG, NM, OO'M and MJO'L were responsible for planning the design of this study. CS and ZC were responsible for data collection. CS analysed the collected data and completed the first draft of the manuscript. All authors contributed to further edits and proofreading of the manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.