Multidisciplinary care (MDC) is increasingly thought to be an important means of symptomatic and supportive management for motor neuron disease (MND) but the evidence base for its effectiveness is unclear. This is the first update of a review first published in 2009.
To assess the effectiveness of MDC in adults with MND, especially the types of approaches that are effective (settings, intensity) and the outcomes that are affected.
We searched The Cochrane Neuromuscular Disease Group Specialized Register (5 July 2011), CENTRAL (2011, Issue 3, searched 20 July 2011), MEDLINE (1966 to June 2011), EMBASE (1980 to June 2011), CINAHL Plus (1937 to June 2011), AMED (1985 to June 2011) and LILACS (1982 to June 2011).
Randomised and controlled clinical trials that compared MDC in MND with either routinely available local services or lower levels of intervention; or studies that compared MDC in different settings or at different levels of intensity.
Studies of ‘other designs’ (such as observational studies) were included only in the Discussion since such studies could only be of limited contribution to the best evidence synthesis.
Data collection and analysis
We performed a ‘best evidence’ synthesis based on methodological quality. We grouped studies in terms of setting and intensity (high or low) of therapy.
No randomised controlled trials or controlled clinical trials were identified for the original review or this update. We summarised the results of five observational studies (including one with two reports) in the Discussion section of this review.
In the absence of randomised controlled trials or controlled clinical trials, the ‘best’ evidence to date is based on three ‘low’ and two ‘very low quality’ observational studies. These suggest ‘very low quality evidence’ for an advantage for mental health domains (only) of quality of life without increasing healthcare costs, and ‘low level quality’ evidence for reduced hospitalisation for MDC in low-intensity outpatient settings; and ‘very low quality’ evidence for improved disability in high-intensity settings. The evidence for survival is conflicting. These conclusions are tentative and the gap in current research should not be interpreted as proof that MDC is ineffective. Further research is needed into appropriate study designs; outcome measurement; caregiver needs; and the evaluation of optimal settings, type, intensity or frequency and cost-effectiveness of MDC in the MND population. Future research should focus on observational designs to assess care and outcomes in ‘real-life’ settings. The interface between neurology, rehabilitation and palliative care should be explored to provide long-term support for MND.
Plain language summary
Multidisciplinary care for adults with amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND)
Motor neuron disease, also known as amyotrophic lateral sclerosis, is a fatal neurological disease which produces paralysis of the limb, swallowing and breathing muscles. As there is no current curative treatment for MND, the focus of management is on symptomatic, rehabilitative and palliative therapy, delivered by a ‘multidisciplinary’ team that is made up of different disciplines (for example, doctors, nurses, therapists) working in a co-ordinated and organised manner.
This review did not find any high quality randomised controlled trials that examined the effectiveness of such multidisciplinary care, either when originally published in 2009 or for the update in 2011. The evidence from low quality studies suggests that such care may improve some aspects of quality of life, reduce the frequency of hospitalisation and hospital length of stay and improve disability in persons with ALS or MND. The evidence for multidisciplinary care on survival is conflicting.
The gap in current research should not be interpreted as proof that multidisciplinary care is ineffective. Further research into types of appropriate studies, caregiver needs and various aspects of multidisciplinary care in the MND population is needed.