Search

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.

Context: Palliative care is being advocated for noncancer patients but needs evidence of effectiveness and cost-effectiveness., Objective: We evaluated the cost-effectiveness of a new palliative care service for people with multiple sclerosis (MS)., Methods: We used a randomized fast-track Phase II controlled trial. Patients in South East London who were severely affected by MS were referred by clinicians to the trial. After baseline interview, patients were randomly allocated to either a multiprofessional palliative care team (PCT) immediately (fast track) or the control care group who continued best usual care for three months and then were offered the PCT. Data were collected at baseline, 6, 12, 18, and 26 weeks on use of services, patient symptoms, other outcomes, and caregiver burden., Results: Fifty-two patients were randomized: 25 fast track and 21 control patients completed the trial. There was a high level of disability, and mean Expanded Disability Status Scale score was 7.7 (median 8, standard deviation 1.0). At 12 weeks, caregiver burden was 4.47 points lower (95% confidence interval [CI]: 1.05-7.89) in the fast track compared to the control group. Mean service costs, including inpatient care and informal care, over the 0-12-week follow-up were pound1,789 lower for the fast-track group (bootstrapped 95% CI: - pound5,224 to pound1,902). There was a trend toward lower community costs in the fast-track group and no differences in costs to informal caregivers., Conclusions: 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.

We report a systematic appraisal of definitions and approaches to needs assessment in palliative care. Electronic databases were searched, and relevant individuals and organizations were contacted to identify needs assessments in palliative care. Over 200 articles were identified giving general information on needs assessment, and 77 articles comprised palliative care-related needs assessment reports. The reports originated from Africa (37), Australia (1), Europe (including former central/eastern European states) (35), USA (1), Latin America (5), and Asia (7). Two underpinning definitions of need were identified, that of Maslow from the field of psychology, and that of Bradshaw from sociology. However, in conducting needs assessments, these definitions were operationalized, and here the National Health Service Executive definition of need as "the ability to benefit from health care" is helpful. We identified three main categories of approach to needs assessment--epidemiological, corporate, and comparative--that can be used in combination. Careful consideration must be paid to any needs assessment data to ensure that the assessment is implemented.