Are supportive services meeting the needs of Australians with neurodegenerative conditions and their tamilies

Abstract

To identify the needs for supportive care/palliative care services of people in Australia with four neurodegenerative disorders - motor neurone disease, multiple scleroris, Parkinsons' disease, Huntington's disease - and the needs of their families: and to determine the extent to which existing supportive and palliative care services models meet these needs.A mailed self-administered questionnaire to individuals with the four neurodegenerative diseases and their carers, in Western Australia, Victoria, and Queensland, using stratified proportional sampling from membership lists of the disease associations.A total of 503 patients and 373 carers responded, representing a response rate of 25.6% and 19.0%, respectively. Exclusion criteria included those who had been recently diagnosed, and those too sick or disabled to participate.As patient dependency increased and more support was needed, both patients and carers exhibited higher distress symptoms and a poorer quality of life. Those who received more tailored services and more palliative care services were the most satisfied. The results highlighted the need for tailored and flexible models of care for these groups with unique care requirements.This is the first empirical evidence of the needs and services used by these patient groups in Australia, and will form the basis for future developments of palliative and supportive care services for people with these four neurological conditions.