Palliative care and support for people with neurodegenerative conditions and their carers.
OBJECTIVE
to identify and compare the needs for supportive care/palliative care services of people in Australia with Motor Neurone Disease (MND), Multiple Sclerosis (MS), Huntington's Disease (HD) and Parkinson's Disease (PD) and the needs of their carers.


METHODS
national, descriptive survey of service use and support needs for 503 patients and 373 carers. Patients and carers were recruited from the databases of the disease associations in three Australian states. Patients were excluded if recently diagnosed or too sick or disabled to complete the survey. This was a specification of the ethics committee overseeing this project.


RESULTS
the MND and HD groups had the greatest needs for support and appeared most receptive to a palliative approach. The MS group was least likely to have a carer and more likely to live alone. HD and PD groups had the highest rates of anxiety and HD groups had the highest rate of depression.


CONCLUSIONS
patients and carers who received more tailored services and more palliative care services were the most satisfied. Therefore, results highlight the need for tailored and flexible models of care for these groups with unique care requirements.
Kristjanson
Linda J
LJ
Western Australian Centre for Cancer and Palliative Care, School of Nursing, Midwifery and Postgraduate Medicine, Edith Cowan University, Churchlands, Western Australia 6018. L.Kristjanson@ecu.edu.au
Aoun
Samar M
SM
Oldham
Lynn
L
D000203:Activities of Daily Living; D000368:Aged; D001294:Attitude to Health; D001315:Australia; D017028:Caregivers / Q000193:education / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005260:Female; D006302:Health Services Research; D006801:Humans; D006816:Huntington Disease / Q000523:psychology; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000523:psychology; D009103:Multiple Sclerosis / Q000523:psychology; D020380:Needs Assessment; D019636:Neurodegenerative Diseases / Q000150:complications / Q000523:psychology* / Q000628:therapy; D015404:Nursing Methodology Research; D010166:Palliative Care / Q000458:organization & administration / Q000523:psychology; D010300:Parkinson Disease / Q000523:psychology; D011788:Quality of Life / Q000523:psychology; D012720:Severity of Illness Index; D012944:Social Support; D011795:Surveys and Questionnaires