Background Creutzfeldt – Jakob disease is a rare neurodegenerative disorder with an incidence of 1.4 million in UK1. There have been 80-100 cases per year in the UK since 1990. There are 4 forms of Creutzfeldt – Jakob disease: Sporadic, iatrogenic, genetic and variant. Sporadic Creutzfeldt – Jakob disease (sCJD) is commonest and the number of deaths from sCJD has increased. sCJD is relentlessly progressive with a median duration from symptoms to death of 4 months2. Specialist palliative care role has been recognised in the past3 but there is little in the literature since.
Aims To understand in more depth the palliative care needs of patients with sCJD.
Methods Case notes review of patients diagnosed with sCJD.
Results Over 14 month period 6 patients were referred to hospital specialist palliative care team that covers a regional neurosciences centre. Median age 63 Median duration of symptoms to death 3 months Median duration of diagnosis to death 28 days Analysis of notes revealed the following specific palliative care issues. Family/carer psychological support around diagnosis (often late), transition to palliative care, end of life care and bereavement support. Preferred place of care and death – 6 died in a hospice, 1 at home. Symptom management. In order of frequency: Myoclonus, pain, agitation/startle, visual problems, dystonia, emotional distress, respiratory distress, communication issues, swallow/feeding issues, nausea, constipation, respiratory secretions, seizures. Family support around postmortem and care of body after death.
Conclusion Specialist palliative care knowledge and services have an important role in the care of patients with sCJD.
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