Background Long term neurological conditions (LTNCs) are a group of irreversible, degenerative diseases of the nervous system which cause increased disability, cognitive impairment and dependence over time. They include Multiple Sclerosis (MS), Parkinson’s Related Diseases (PRDs) and Motor Neurone Disease (MND). While specialist palliative care is recommended for patients with LTNCs, only patients with MND are routinely referred at present.
Aim To describe, compare and contrast the symptom burden and psychological distress of patients with MS, PRDs and MND.
Methods A cross-sectional secondary analysis of the OPTCARE Neuro trial data was performed. Patients aged 18 or over, severely affected by advanced stages of MS or PRDs or any stage of MND, with an unresolved symptom and one other issue despite usual care were eligible. Demographic data along with disease stage, time since diagnosis, performance status, IPOS Neuro and the Hospital Anxiety and Depression Scale (HADS) were analysed.
Results Data from 348 participants was analysed - 148 (42.5%) with MS, 177 (50.9%) with PRDs, and 23 (6.6%) with MND. The mean IPOS Neuro-S24 score was highest in the MS group (M = 27.68, SD = 10.3), followed by PRDs group (M = 26.86, SD = 10.23) and the MND group (M = 24.23, SD = 10.19), with no statistical difference found (p = 0.341). The most distressing symptoms varied for each diagnosis. The HADS revealed that 26% and 25.2% of participants met the criteria for a diagnosis of anxiety and depression respectively, with no statistical difference between groups.
Conclusion MS, PRDs and MND patients have a similar burden of distressing physical and psychological symptoms, with some differences in the symptom profiles for each diagnosis. Based on these results, MS and PRDs patients who were eligible for the OPTCARE Neuro trial may benefit from routine referral to specialist palliative care.
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