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Worse general and mental health for patients receiving rehabilitation?
There is little evidence available to support or explain the role of rehabilitation in progressive neurological disorders, so the paper by Wade et al (this issue, page 158-162) is a welcome contribution.1 The paper examines whether patients with Parkinson’s disease have sustained benefit following a multidisciplinary outpatient rehabilitation programme. The programme comprised individualised multidisciplinary interventions and a group education programme and was delivered to six patients at a time over six weeks. The findings suggest that six months after randomisation those receiving rehabilitation had worse general and mental health and that their carers had a trend to more strain. This contrasts with findings from studies of the rehabilitation of people with multiple sclerosis2 and brain injury.3 Why should this conscientiously performed intervention have apparently negative effects?
The authors themselves suggest a number of reasons, including previously satisfactory management leaving little room for improvement, limited input, little psychological or medical input, need for continued input, and finally, the use of inappropriate measures. These reasons may all provide an explanation for the lack of benefit but do not explain the negative impact. To explain this we should consider further the nature of the intervention and it’s assessment.
In this study the multidisciplinary therapy input was assessed using two main measures. The impact of the physiotherapy intervention was measured using a sit-stand-walk time and showed a trend towards improvement. The occupational therapy components were not measured directly and the speech and language therapy aspects were measured on a 5 point scale, which may be relatively unresponsive.
The authors also measured health related quality of life. Interestingly this deteriorated in the intervention group. Health related quality of life (HRQoL) may be defined as the patients’ appraisal of their current level of functioning and their satisfaction with it compared with what they perceive to be ideal. In the context of this study it will be influenced by the whole intervention, including the educative aspects of the programme. This will include the day to day education provided by the therapists as part of the treatment sessions, as well as the formal education programme. There is now considerable expertise in the areas of patient education. Teaching packages should enhance self-management and self efficacy.4 The patients recruited to this study are not described in terms of disease severity and duration but patients early after diagnosis will have very different needs to those who are entering a more complex stage of the disease with an unpredictable response to medication. Mistimed education programmes may be seen as trivial or intrusive and distressing. There is evidence that significant parts of the variance of HRQoL are accounted for by mood5 but, as pointed out by the authors, doctors and psychologists were not involved in this study.
This is a useful contribution to the literature but the findings emphasise the need for clarity when planning interventions and the measurement of their benefit. The design of rehabilitation trials is a developing science, but two questions need to be kept in mind. Firstly, does the intervention work and, secondly, is the intervention of value to the patient? In this study the intervention may have worked in some areas but not others, but despite this the patients still appeared to value it. Clarifying the reasons for these findings is important so the design of future trials can be improved.