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Managing and sharing research data in children's palliative care: Risks, benefits and imponderables
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Despite advances in treatment, childhood cancer is still one of the leading causes of death in childhood and adolescence. This study looked at the role of specialist paediatric palliative care services, which are argued to be an important component of children and young people’s cancer services. The study examined existing evidence from 42 studies to explore the impact of these specialist services and identify the factors affecting access. These studies tell us that children who access specialist palliative care have less intensive care at the end-of-life, more advance care planning, and fewer hospital deaths compared with children who don’t access them. However, they can’t tell us whether these services improve children’s quality of life or symptom management. Children with blood cancers are the least likely to receive this specialist input, and clinician uncertainties about how, when and why to involve palliative care services are a key barrier to access. The outcome of the study proves we need further high-quality research to determine whether specialist paediatric palliative care improves quality of life for children and young people with cancer, and research that explores the views of children and young people.
'Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review' - Johanna Taylor, Alison Booth, Bryony Beresford, Bob Philips, Kath Wright, Lorna Fraser. Palliative Medicine, 2 May 2020
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Advances and Challenges in European Paediatric Palliative Care
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Martin House Research Centre researchers have had a paper accepted on importance of the role that GPs play in the care of children and young people with life limiting conditions. To be published in the British Journal of General Practice, the paper shows that those individuals who saw a GP more regularly had fewer emergency inpatient admissions and A&E attendances. Those individuals who saw the same GP for more than two thirds of visits had fewer A&E attendances. The study therefore highlights the potential importance of regular contact with the same GP for CYP with LLCs and their families, alongside care provided by specialist paediatricians.
'GPs’ role in caring for children and young people with life-limiting conditions: a retrospective cohort study' -
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