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Paediatric end-of-life care – symptoms and problems: parent assessment
  1. Camilla Lykke1,2,
  2. Ola Ekholm3,
  3. Marianne Olsen4 and
  4. Per Sjøgren1
  1. 1Department of Oncology, Rigshospitalet, Copenhagen, Denmark
  2. 2Department of Oncology and Palliative Care, Nordsjællands Hospital, Hillerod, Denmark
  3. 3National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark
  4. 4Department of Pediatrics and Adolescent Medicine, Rigshospitalet, Copenhagen, Denmark
  1. Correspondence to Camilla Lykke, Department of Oncology, Rigshospitalet, Copenhagen, Denmark; camilla.charlotte.lykke{at}


Objective Symptoms and problems (S&P) are under-reported in children in end-of-life care.

To target future interventions, the primary aim was to examine S&P in children in end-of-life care.

Methods All parents, who lost a child under the age of 18 years due to life-limiting diagnoses in the period 2012–2014 in Denmark, were invited to complete a self-administered questionnaire in 2017. In all, 152 (38%) children were represented by 136 mothers and 57 fathers. In the present study, parents’ assessments of S&P during the last month of life were restricted to children aged 3–18 years. Data were analyses by means of descriptive statistics.

Results Children ≥3 years at the time of death were represented by 71 parents (48 mothers and 23 fathers) representing 56 out of the 152 children. Physical fatigue (93%), sleepiness (90%), poor appetite (87%), pain (84%) and nausea (84%) were the five most frequent symptoms reported by the parents. In all, 65% of the parents reported that satisfactory pain relief was obtained and 64% of the parents reported that the healthcare services to a large extent reacted quickly, when the child and/or family needed help. However, 46% of the parents experienced ‘mess-ups’ or sloppy services in the primary ward and 27% experienced that the children suffered from fear of death.

Conclusion According to the parents, children with life-limiting diagnosis are highly symptomatic and have substantial problems during end-of-life care. Our findings indicate that systematic screening of S&P in children should be considered.

  • paediatrics
  • symptoms and symptom management
  • terminal care

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  • Contributors CL conceptualised and designed the study, carried out the initial analyses, drafted the manuscript and revised the manuscript. PS, MO conceptualised and designed the study, supervised the study and critically reviewed the manuscript. Senior advisor, OE, conceptualised and supervised the study, carried out the analyses and critically reviewed the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  • Funding This study was funded by Helsefonden (Grant number 2016-6).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The study protocol was approved by the Danish Ethics Committee (H-16021831) and the Danish Data Protection Agency (2012-58-0004).

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

  • Data availability statement Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as online supplemental information. Any requests for data sharing should be put in writing to the corresponding author.