Specialist neurological MDT clinics improve outcomes in patients with motor neurone disease (MND)1. Non-invasive ventilation (NIV) was utilised in only 3% of this study group, but has since been shown to improve survival in selected patients2. With increasing referrals for NIV, our initial experience indicated a need for respiratory MDT input and a patient preference for day-case assessment. We established a clinic comprising regular specialist respiratory, nursing, physiotherapy and speech therapy assessment, ideally prior to the need for NIV. We undertake regular blood gases, overnight community sleep studies and lung function tests, in line with NICE recommendations. This study looks at our experience in transitioning to a dedicated MND day-case model, and how it has affected quality of care.
Methods We looked at two cohorts of MND patients seen over a 3-month period before (2009) and after (2012) the day-case clinic was established. There were 66 patients in the first cohort and 82 patients in the second. We compared the quality of service delivered by looking at the proportion of patients who had received the appropriate respiratory assessments. For lung function studies, we excluded those in whom mouthpiece testing was not possible (due to significant bulbar problems). For blood gases and sleep studies, all were included.
Results The current cohort comprised 9 new referrals and 73 follow-ups (55 male, average age 63 yrs). Of these, 53 (65%) did not currently require NIV, 27 (33%) were already established on NIV and 2 (2%) received tracheostomy ventilation. As expected, there was a major shift towards day-case attendance (from 33% in 2009 to 82% in 2012). There was a clear increase in objective screening tests. Table 1 shows the proportion of eligible patients receiving these tests.
Discussion These results show that a dedicated day-case MDT clinic improves the ventilatory assessment of MND patients. Whilst the uptake of NIV and, ultimately, survival, can only be determined in due course, we have previously shown a significant increase in NIV uptake in our MND patients (70% in 2011). We feel that the greater availability of objective testing, demonstrated here, and the structured approach of the service has contributed to this.
Traynor BJ et al. J Neurol Neurosurg Psychiatry 2003.
Bourke SC et al. Lancet Neurology 2006.