The sessions we attended today at the 24th international symposium included autonomy and quality of life, cognitive and psychological change.
Hogden, from Australia described a decision making model which was originally used in cancer care. She highlighted that there were lots of important decisions that patients need to make but these are made more difficult by the constant change which occurs in ALS/MND. She reported the results of her qualitative study and described the model which she derived from it. She explained that the clinician needed to wait until the patient was ready to commence the decision making process. Before a decision is made the patient is likely to cycle around the model a number of times. The model can be used to assess where patients are in the decision making process. This is beneficial for health professionals to be aware of when patients are making the decision to have a gastrostomy.
It is well recognised that cognitive deficits can occur in ALS/MND. Mioshi, from Australia described often under reported symptoms e.g disinhibition, stereotypical behaviour and rigidity of thought.These symptoms often emerge early in the disease trajectory. She highlighted the need to detect these symptoms as they impact significantly on clinical decision making and patient compliance to treatments. It was suggested that if detected early, education can be given to the carer and this can potentially reduce carer burden. Her study of 299 patients showed that the presence of these behavioural symptoms do not seem to affect survival in ALS.
Rewaj from Scotland, UK, discussed language impairment in ALS/MND. It followed earlier presentations on cognitive and behavioural change in MND. Her study showed that linguistic impairment e.g grammatical comprehension and orthographical awareness was reduced in patients with dysarthria. This information is important for speech and language therapists when planning implementation of a communication aid.
We also took the opportunity this evening to view the many posters displayed in the Aquarium. Of particular interest was the coordination of swallowing and breathing by Bianchi et al. from Milan, palatal plate implantation by Pasian et al. from Italy and the one handed feeding tube assist device by Beggs et al. from Vancouver.