Objective: To determine whether a programme of multidisciplinary rehabilitation and group support achieves sustained benefit for people with Parkinson's disease or their carers. Methods: The study was a randomised controlled crossover trial comparing patients and carers who had received rehabilitation four months before assessment with those who had not. Patients were recruited from a neurology clinic, attended a day hospital from home weekly for six weeks using private car or hospital transport, and received group educational activities and individual rehabilitation from a multidisciplinary team. Patients were assessed at entry and at six months using a 25 item self assessment Parkinson's disease disability questionnaire, Euroqol-5d, SF-36, PDQ-39, hospital anxiety and depression scale, and timed stand-walk-sit test. Carers were assessed using the carer strain index and Euroqol-5d. Results: 144 people with Parkinson's disease without severe cognitive losses and able to travel to hospital were registered (seven were duplicate registrations); 94 had assessments at baseline and six months. Repeated measures analysis of variance comparing patients at the 24 week crossover point showed that those receiving rehabilitation had a trend towards better stand-walk-sit score (p = 0.093) and worse general and mental health (p = 0.002, p = 0.019). Carers of treated patients had a trend towards more strain (p = 0.086). Analysis comparing patients before and six months after treatment showed worsening in disability, quality of life, and carer strain. Conclusions: Patients with Parkinson's disease decline significantly over six months, but a short spell of multidisciplinary rehabilitation may improve mobility. Follow up treatments may be needed to maintain any benefit.

This intensive co-ordinated programme provided immediate benefits to people with Parkinson's disease and their carers.

An analysis was undertaken of clinic-based questionnaires that asked people with Parkinson's disease and a control group of older people without a known neurological condition about their experiences of constipation. People with Parkinson's disease report higher constipation on a validated objective measure, the Rome criterion (59% vs. 20.9%); a behavioral indicator, laxative-taking (38.4% vs. 14.2%); and subjective self-report of being always or often concerned by it (33.4% vs. 6.1%). Many people with Parkinson's disease experience constipation problems but they may not bring these to the attention of their healthcare providers. More research is required to understand the causes and management options.

A cost-consequences analysis provides a clear descriptive summary for decision-makers that is easier to interpret than cost-effectiveness, cost-utility and cost-benefit analysis. It is a useful technique in rehabilitation research where multiple outcomes and several perspectives (health service, patient, carer) are relevant. However limitations remain: it is difficult to capture all consequences because of data deficiencies and long-term effects; evaluations of individual interventions are partial and do not guarantee economic rationality; local studies may not be generalizable; fixed protocols impede the evaluation of alternative service configurations.

BackgroundMultidisciplinary rehabilitation is recommended for Parkinson’s disease, but evidence suggests that benefit is not sustained.Objectives(1) Implement a specialist domiciliary rehabilitation service for people with Parkinson’s and carers. (2) Provide continuing support from trained care assistants to half receiving the rehabilitation. (3) Evaluate the clinical effectiveness of the service, and the value added by the care assistants, compared with usual care. (4) Assess the costs of the interventions. (5) Investigate the acceptability of the service. (6) Deliver guidance for commissioners.DesignPragmatic three-parallel group randomised controlled trial.SettingCommunity, county of Surrey, England, 2010–11.ParticipantsPeople with Parkinson’s, at all stages of the disease, and live-in carers.InterventionsGroups A and B received specialist rehabilitation from a multidisciplinary team (MDT) – comprising Parkinson’s nurse specialists, physiotherapists, occupational therapists, and speech and language therapists – delivered at home, tailored to individual needs, over 6 weeks (about 9 hours’ individual therapy per patient). In addition to the MDT, participants in group B received ongoing support for a further 4 months from a care assistant trained in Parkinson’s (PCA), embedded in the MDT (1 hour per week per patient). Participants in control group (C) received care as usual (no co-ordinated MDT or ongoing support).Main outcome measuresFollow-up assessments were conducted in participants’ homes at 6, 24 and 36 weeks after baseline. Primary outcomes: Self-Assessment Parkinson’s Disease Disability Scale (patients); the Modified Caregiver Strain Index (carers). Secondary outcomes included: for patients, disease-specific and generic health-related quality of life, psychological well-being, self-efficacy, mobility, falls and speech; for carers, strain, stress, health-related quality of life, psychological well-being and functioning.ResultsA total of 306 people with Parkinson’s (and 182 live-in carers) were randomised [group A,n = 102 (n = 61); group B,n = 101 (n = 60); group C,n = 103 (n = 61)], of whom 269 (155) were analysed at baseline, pilot cohort excluded. Attrition occurred at all stages. A per-protocol analysis [people with Parkinson’s,n = 227 (live-in carers,n = 125)] [group A,n = 75 (n = 45); group B,n = 69 (n = 37); group C,n = 83 (n = 43)] showed that, at the end of the MDT intervention, people with Parkinson’s in groups A and B, compared with group C, had reduced anxiety (p = 0.02); their carers had improved psychological well-being (p = 0.02). People with Parkinson’s in groups A and B also had marginally reduced disability (primary outcome,p = 0.09), and improved non-motor symptoms (p = 0.06) and health-related quality of life (p = 0.07), compared with C. There were significant differences in change scores between week 6 (end of MDT) and week 24 (end of PCA for group B) in favour of group B, owing to worsening in group A (no PCA support) in posture (p = 0.001); non-motor symptoms (p = 0.05); health-related quality of life (p = 0.07); and self-efficacy (p = 0.09). Carers in group B (vs. group A) reported a tendency for reduced strain (p = 0.06). At 36 weeks post recruitment, 3 months after the end of PCA support for group B, there were few differences between the groups. Participants reported learning about Parkinson’s, and valued individual attention. The MDT cost £833; PCA support was £600 extra, per patient (2011 Great British pounds).ConclusionsFurther research is needed into ways of sustaining benefits from rehabilitation including the use of care assistants.Study registrationCurrent Controlled Trials: ISRCTN44577970.FundingThis project was funded by the National Institute for Health Research Health Services and Delivery Research programme and the South East Coast Dementias and Neurodegenerative Disease Research Network (DeNDRoN), and the NHS South East Coast. The report will be published in full inHealth Services and Delivery Research; Vol. 2, No. 51. See the NIHR Journals Library website for further project information.

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