Defining the palliative care needs of people with late stage Parkinson's Disease (PD), Multiple System Atrophy (MSA) and Progressive Supranucleur Palsy (PSP)

Research Team: PN Leigh, Irene J Higginson, Tariq Saleem, N Donaldson, Paul McCrone, C Clough, KR Chaudhuri, Lynne Turner-Stokes, Rachel Burman, R Brown

This research sets out to understand the experiences and needs of people severely affected by PD, MSA and PSP in order to identify the most effective approaches to enhancing quality of life and providing flexible personalised support through health and social services, the voluntary sector (user groups, support groups) and resources within families living with these conditions.

More specifically its aims are:

1. to describe the physical, emotional, social, healthcare and information needs of people living with PD, MSA or PSP.
2. To identify the key factors associated with impaired quality of life (QoL), unresolved symptoms and psychological needs in people affected by these disorders.
3. To identify key factors that influence health costs.
4. To provide evidence of palliative care needs and trigger points for referral to palliative care services for these groups.

It adopts a mixed methods approach, with two simultaneous components: a longitudinal survey and qualitative interviews with patients and carers.

Research into Parkinson's Disease is continuing within the King's Centre for Palliative Care in Neurology which was established in 2006 to take forward research into long term neurological conditions.

King's Centre for Palliative Care in Neurology