The trial suggests that short-term palliative care for people severely affected by MS and their caregivers will be cost-effective and warrants further study. The fast-track trial design could be used to assess this.
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Multiple sclerosis results in both physical and psychological disability but some patients have needs that are not adequately met by existing services. Our objective was to explore whether a new palliative care service improved outcomes for people severely affected by multiple sclerosis. A delayed intervention randomized controlled trial was undertaken with multiple sclerosis patients deemed by staff to have palliative care needs. The intervention was a multiprofessional palliative care team assessment and follow-up. The intervention group was offered the team immediately (fast track, FI); the control group continued best standard care and then offered the team after 3 months (standard intervention, SI). The main outcome measures were: patient reported issues using the Palliative Care Outcome Scale and Multiple Sclerosis Impact Scale at 12 weeks and caregiver burden using the Zarit Burden Inventory. Sixty-nine people were referred to the service; 52 consented or were eligible to be randomized (26 to the FI and 26 to the SI groups). At 12 weeks people in the FI group had an improvement (mean change -1.0) in the total score of 5 key symptoms whereas there was deterioration in the SI group (mean change 1.1, F = 4.75, p = 0.035). There was no difference in the change in general Palliative Care Outcome Scale or Multiple Sclerosis Impact Scale scores. There was an improvement in caregiver burden in the FI group and a deterioration in the SI group (F = 7.60, p = 0.013). Involvement with the palliative care service appeared to positively affect some key symptoms and reduced informal caregiver burden.
Fatigue is common in multiple sclerosis (MS) and is an important cause of disability. However, the cause of fatigue is poorly understood. This study aimed to describe the frequency and pattern of sleep disturbance in a group of outpatients with MS, and to investigate the relationship between sleep disturbance and fatigue. Sixty outpatients with MS completed the Fatigue Severity Scale (FSS) and the Epworth Sleepiness Scale and kept a sleep diary for seven days. Fatigue and excessive daytime sleepiness were common in this group of patients (64 and 32%). Sleep problems on at least two nights per week occurred frequently, including initial insomnia in 42%, middle insomnia in 53% and terminal insomnia in 58%. The reasons cited for different types of insomnia varied, with anxiety and pain/discomfort being the commonest causes of initial insomnia and nocturia the commonest cause of middle insomnia. Middle insomnia was significantly correlated with daytime fatigue, a relationship that remained after controlling for disability. Sleep disturbance is common in MS and is associated with treatable symptoms, including pain and nocturia. Sleep disturbance may be an important factor contributing to fatigue in patients with MS.
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