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.