Quality of life for people with MND

Developing palliative care for people with MND

Dr Normand of Trinity College, Dublin explained that due to the origins of palliative care, which, he said “owes much to the vision and commitment of some extraordinary people”, research on its effectiveness has been limited. His evaluation of palliative care found that the healthcare providers tried to ‘protect’ their patients. Patients’ rating of different aspects of the services were different to those perceived by healthcare providers. This evaluation will be used for the development of future services with input from people with MND.

Monitoring quality of life for people affected by MND

“Quality of life is what people say it is”, explained Dr O’Boyle, based at the Royal College of Surgeons in Ireland, adding that we need to consider this when developing methods to assess quality of life in people with MND. He presented a number of studies that used the “SEIQoL” measure of quality of life, which allows patients to choose the areas of their lives that are important to them. Dr O’Boyle also illustrated the importance of hindsight in assessing quality of life: Although rated highly at the time, comparison with improvements made in the interim may cause people to alter their initial opinion. Quality of life measurements are an aspect of many clinical trials, so it is important to consider all of these factors in the overall assessment of a drug or new clinical intervention.