Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease

Abstract

Background: 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.

Objectives: 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.

Search strategy: We searched The Cochrane Neuromuscular Disease Group Specialized Register (11 May 2009), and The Cochrane Central Register of Controlled Trials (The Cochrane Library Issue 2, 2009), MEDLINE (1966 to April 2009), EMBASE (1980 to April 2009), CINAHLPlus (1937 to April 2009), AMED (1985 to April 2009) and LILACS (1982 to April 2009).

Selection criteria: 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.

Main results: No randomised controlled trials or controlled clinical trials were identified. We summarised the results of five observational studies (including one with two reports) in the Discussion section of this review.

Authors' conclusions: 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.