Palliative care triggers in progressive neurodegenerative conditions: An evaluation using a multi-centre retrospective case record review and principal component analysis

Abstract

Background: The use of specific triggers has been suggested to help identify patients with progressive neurological disease who would benefit from palliative care. Aim: This study aimed to improve the evidence base for the use of triggers for patients with progressive neurological disease. Design: An evaluation of palliative care services was undertaken using a retrospective case note review of the timing and presence of triggers in the last 2 years of life. Setting/participants: A total of 12 specialist palliative care units across the United Kingdom provided data from 300 patients: mean patient age 70 years, 50% male, diagnoses included motor neurone disease 58%, Parkinson’s disease 17% and Parkinson’s Plus syndromes 12%. Results: There was a high burden of triggers – 17 in the last 2 years of life and 10 in the last 6 months of life. The most frequent triggers were deteriorating physical function, complex symptoms and dysphagia. Four factors were found to explain 64% of the total variance: Factor 1 – Deterioration in physical function, dysphagia, significant complex symptoms and pain; Factor 2 – Weight loss and respiratory symptoms; Factor 3 – Recurrent infections and cognitive decline; Factor 4 – Aspiration pneumonia. Cox regression analyses found different triggers were associated with survival from diagnosis versus survival from referral to palliative care. Different triggers were also associated with survival for different neurological conditions. Conclusion: This study demonstrates that there is a high burden of triggers in the last months and years of life and that these could potentially be reduced to fewer components. Prospective studies assessing which triggers are useful for different conditions are now required.