What are the palliative care needs of people severely affected by neurodegenerative conditions, and how can a Specialist Palliative Care Service best meet these needs.

Background: There is increasing recognition of the need for service development for

patients in the advanced stages of neurological conditions. This study explores the

palliative care needs of people with advanced amyotrophic lateral sclerosis, multiple

sclerosis, Parkinson’s disease and related disorders, and assesses the impact of a new

specialist palliative care service (SPCS)

Methods:. A mixed methods approach was adopted:

• a qualitative needs assessment using in-depth interviews with patients and their

family carers and focus groups of professionals involved in the care of this

population.

• a quantitative pilot-explorative randomized and controlled trial (RCT) to assess

the impact of a new SPCS designed to meet the palliative care needs of the study

population – using a waiting list methodology comparing the immediate

provision of SPCS with standard care .

Results:

• Qualitative study: 22 patients, 21 family carers and 11 professionals participated

to the needs assessment. The content analysis showed a high prevalence of

problems. Professionals confirmed the high burden of problems, were positive

about the creation of a new SPCS and their knowledge of specific palliative care

topics seemed lacking.

• Quantitative study: 50 patients, with 45 carers, participated in the explorative

RCT. The comparison between the groups (FT-ST) after 16 weeks revealed

significant improvement for the SPCS group for quality of life and in four

physical symptoms - pain, breathlessness, sleep disturbance and intestinal

symptoms

Conclusions: This research confirms the high prevalence of physical symptoms,

psychosocial issues and spiritual themes for people severely affected by advanced

neurodegenerative disorders and that these can be helped by specialist palliative care.

The input of a SPCS caused a significant improvement of the individual quality of life

of the patients and improved symptom control for pain, breathlessness, quality of sleep

and intestinal symptoms compared to standard best care alone.