Descriptive audit of the key characteristics of the current MND population in a large UK specialist MND clinic

Background: A specialist service has been established at this centre for many years, providing on-going follow up for people with MND. As part of a larger study exploring the personal experience of living with MND, an audit of the patient population was undertaken to identify prevailing characteristics of patients currently followed up by the service. Objectives: The aims of this study were to determine the personal demographic characteristics of the patient population; identify site/type of disease onset and current severity (using the ALS Health Severity Scale (ALSHSS) (1) and ALSFRS-R, (2); assess level of uptake of PEG, NIV and aids/ equipment; assess level and type of care required; determine the time from disease onset to diagnosis and identify the time from diagnosis to nurse specialist follow-up. Methods: A comprehensive case note review was undertaken of patients (n�98) currently receiving follow up at this centre. Statistical analysis was aided by SPSS version 14.0 to produce descriptive statistics indicating frequency of occurrence of key characteristics. Results: The mean (standard deviation, SD) age at onset was 59.7 (12.6) years. 54.1% of the patients were male. Most patients (38.8%) had ALS with limb onset, with 29.6% having ALS with bulbar onset. The majority of patients were classed in the level 2 category of the ALSHSS, (58.2%) compared to 17.3% in level 1, 18.4% in level 3 and 6.1% in level 4. Four patients (4.1%) were on NIV and 16(16.3%) had a PEG inserted. The majority of patients relied on 1�3 items of equipment (46.9%) compared to 33% who used more than 3 items. 16.3% of patients did not currently use any aids or equipment. 28.6% of the patients lived independently with no uptake of care. 23.5% lived independently but with family assistance and 19.4% relied on family carers full time. 18.4% relied mainly on family but also accessed social services care. 5.1% of patients lived in residential accommodation. The mean time from symptom onset to diagnosis was 18.7 months (SD�15.2) with 41.7% of patients receiving their diagnosis within 12 months of symptom onset. The majority of patients (78.5%) were commenced on nurse specialist follow up within 12 weeks of diagnosis with the mean length of time from diagnosis to commencement being 6.3 weeks (SD�11.2). Conclusions: This audit demonstrates the characteristic features of the current MND population followed up by this centre and for the first time provides detailed information regarding the level of disability and uptake of care services and equipment amongst this population. The length of time from symptom onset to diagnosis for most of the patients at this centre corresponds with evidence of a UK average of 11�22 month delay (3).