Patrick Trend

Multidisciplinary rehabilitation for people with Parkinson's disease: a randomised controlled study

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.

Excess burden of constipation in Parkinson's disease: A pilot study

An analysis was undertaken of clinic‐based questionnaires that asked people with Parkinsons disease and a control group of older people without a known neurological condition about their experiences of constipation. People with Parkinsons 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 Parkinsons 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.

Evaluating rehabilitation using cost-consequences analysis: an example in Parkinson's disease

Objective: To use cost-consequences analysis to evaluate rehabilitation, and to discuss some practical limitations. Design: Case study of a cost-consequences analysis. Setting: Day hospital. Subjects: People with Parkinsons disease without major cognitive loss, and their carers. Intervention: A programme of multidisciplinary rehabilitation, delivered for one day per week over six weeks, and including 2 h of individual therapy (physical, occupational, speech and language, specialist nurse) and group activities on each occasion. Main measures: Costs: direct and overhead costs of treatment; participant travel. Consequences: patient outcomes (mobility, speech and language, disability, psychological well-being, health-related quality of life); carer outcomes (psychological well-being, health-related quality of life, strain); social service utilization; satisfaction. Results: In this example the main costs were facilitys overheads and hospital-provided transport. The consequences of the intervention were improved immediate outcomes for patients that diminished over four months, discovery of unmet social services need, high satisfaction. No benefits for carers were observed. Conclusion: 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.

Workloads of Parkinson's specialist nurses: implications for implementing national service guidelines in England

Aims: Recent guidelines for the care of people with Parkinson’s disease within the British National Health Service envisage a wider role in the community for Parkinson’s specialist nurses. A national survey was conducted to explore current nurse caseloads and capacity for expansion.

A comparison of specialist rehabilitation and care assistant support with specialist rehabilitation alone and usual care for people with Parkinson's living in the community: study protocol for a randomised controlled trial

BackgroundParkinsons Disease is a degenerative neurological condition that causes movement problems and other distressing symptoms. People with Parkinsons disease gradually lose their independence and strain is placed on family members. A multidisciplinary approach to rehabilitation for people with Parkinsons is recommended but has not been widely researched. Studies are needed that investigate cost-effective community-based service delivery models to reduce disability and dependency and admission to long term care, and improve quality of life.MethodsA pragmatic three parallel group randomised controlled trial involving people with Parkinsons Disease and live-in carers (family friends or paid carers), and comparing: management by a specialist multidisciplinary team for six weeks, according to a care plan agreed between the professionals and the patient and carer (Group A); multidisciplinary team management and additional support for four months from a trained care assistant (Group B); usual care, no coordinated team care planning or ongoing support (Group C). Follow up will be for six months to determine the impact and relative cost-effectiveness of the two interventions, compared to usual care. The primary outcomes are disability (patients) and strain (carers). Secondary outcomes include patient mobility, falls, speech, pain, self efficacy, health and social care use; carer general health; patient and carer social functioning, psychological wellbeing, health related quality of life. Semi structured interviews will be undertaken with providers (team members, care assistants), service commissioners, and patients and carers in groups A and B, to gain feedback about the acceptability of the interventions. A cost - effectiveness evaluation is embedded in the trial.DiscussionThe trial investigates components of recent national policy recommendations for people with long term conditions, and Parkinsons Disease in particular, and will provide guidance to inform local service planning and commissioning.Trial registrationISRCTN: ISRCTN44577970

Disease-specific training in Parkinson’s disease for care assistants: a comparison of interactive and self-study methods

Objective: To compare two approaches to providing training to care assistants in Parkinson’s disease. Design: Pragmatic parallel arm controlled trial. Setting: Training either by an interactive training day at a local medical education establishment or self study. Subjects: Care assistants recruited from local health and social care providers. Interventions: The content of both interventions was similar, covering causes, symptoms, diagnosis of Parkinson’s disease, multidisciplinary management, mobility, communication, swallowing, and involving 5 hours of study time. Main measures: Knowledge about Parkinson’s (assessed by true/false quizzes and identifying ‘four facts’ about Parkinson’s) immediately post training and six weeks later; views on training methods of care assistants and employers/managers. Results: Thirty-seven employers nominated 100 care staff who were allocated to interactive training (49) and self study (51). Training completion rates (retained to six-week follow-up) were lower for self study (42.1% vs. 83.7% training day). There were no significant differences between groups on quiz or ‘four facts’ scores at baseline or six-week follow-up. Immediately post training, the self-study group (with access to written materials) had significantly higher quiz scores than the training day group (no access to materials at test). Within-group comparisons showed improvements post training. Although interactive training may be preferred, obtaining release from duties can be problematic. Conclusions: Both approaches have similar effects on knowledge of care assistants without prior specific training. Providing a variety of approaches will cater for all preferences. The findings may be generalizable to training the care workforce for other specific roles.

A semantically enabled formalism for the knowledge management of Parkinson's disease

Bio-ontology is a formal representation of biological concepts that is used in the interchange of communication between computers and humans alike. They can then be used in the formulation and retrieval of knowledge. In developing a knowledge-based system for Parkinsons Disease, a procedure of knowledge map was used to capture and harness the intellectual resources of an organization, and new paradigms for knowledge mapping were also formulated. Knowledge bases for symptoms and drugs, physiotherapy, speech and language therapy, and dieting that affect patient care were developed. Finally, the knowledge bases were merged to form a single central repository of knowledge base.