Motor neurone disease in the greater Wellington region: an observational study.

AIMS: This study investigated the demographic and disease characteristics of motor neurone disease (MND), as well as specific aspects of healthcare provision for MND patients in the greater Wellington region. METHODS: Data was collected from clinical records of all known patients with a diagnosis of Motor Neurone Disease MND in the Capital and Coast and Hutt Valley district health board catchment zones over a 12-month period. Survival data was collected at 2-year follow-up. RESULTS: The study population consisted of 40 patients. The mean age at diagnosis was 66.2 years (SD of 13.2). Thirty patients (75%) were New Zealand European. Predominantly limb signs were present in 12 (30%), and 11 (27.5%) had bulbar signs, while 14 (35%) had a mixed pattern and a further 3 (7.5%) had respiratory muscle weakness. At 2-year follow-up, the median survival time following symptom onset in the 32 deceased patients was 29 months (range 6-126 months). CONCLUSIONS: The demographics and disease characteristics of MND in this cohort of patients from the Wellington region is similar to those found in overseas studies. The majority of patients received care in accordance with established guidelines, although certain aspects of healthcare delivery could be further improved.