Abstract
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.
| Original language | English |
|---|---|
| Publication status | Published - 2009 |
| Event | 20th International Symposium on ALS/MND - Berlin, Germany Duration: 8 Dec 2009 → 10 Dec 2009 |
Conference
| Conference | 20th International Symposium on ALS/MND |
|---|---|
| Country/Territory | Germany |
| City | Berlin |
| Period | 8/12/09 → 10/12/09 |