Background: A descriptive audit of the key characteristics of the MND population in a large UK specialist MND clinic was undertaken in 2008 as part of a larger study exploring the personal experience of living with MND. The audit revealed that a significant number of patients and carers were not accessing external caring support provided by local social services, despite increased levels of disability (1). Objectives: The aims of this study were to document changes in the key characteristics over a 12 month period in an attempt to identify factors predictive of uptake of social services care. Methods: A comprehensive case note review of patients was undertaken at 2 time points, T1 (March 2008) and T2 (March 2009). Statistical analysis was aided by SPSS version 16.0. Results: The sample had a mean age of 64.4 years (SD�11.7 years), with a mean onset age of 59.1 years (SD�12.6 years). Age at T1 and duration of the illness were both significantly correlated with ALS Health Severity Scale (ALSHSS) ratings. Only 27.1% of the sample were in receipt of local authority care at T1, with this rising to 37.7% of the surviving sample at T2. The presence or absence of local authority care at T1 was taken as a dependent variable in a logistic regression analysis employing onset age, time from diagnosis to T1, and ALSFRS scores as a predictive model. The model was highly predictive of the dependent variable, with each unit rise in ALSFRS scores being related to an 8.1% decrease in the odds of receiving local authority care at T1. A separate logistic regression showed that forced vital capacity (% of predicted) at T1, and the time from disease onset to T1, were both positively predictive of being alive at T2. In particular, each unit increase in vital capacity at T1 was related to a 4% increase in the odds of being alive at T2. Conclusions: This study has provided detailed information regarding the level of uptake of care services over a one year period for the current MND population followed up by a specialist UK MND clinic. It confirms previous findings of relatively poor uptake of care services by people with MND which may be predicted by taking into account age at onset, disease duration and ALSFRS scores. Additionally, there is confirmation of the role of forced vital capacity as a predictor of survival.
|Publication status||Published - 2009|
|Event||20th International Symposium on ALS/MND - Berlin, Germany|
Duration: 8 Dec 2009 → 10 Dec 2009
|Conference||20th International Symposium on ALS/MND|
|Period||8/12/09 → 10/12/09|