LTNC Research
Defining the palliative care needs of people with late stage Parkinson’s Disease, Multiple System Atrophy and Progressive Supranuclear Palsy

Lead Researcher: Prof. P Nigel Leigh, Dept of Clinical Neuroscience, Kings College London
Start Date: Late 2006
Email: [email protected]

Background: Parkinson's disease (PD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP) are severe, progressive, and very disabling neurological disorders of middle and late life. Over the age of 65, about 1 person in 100 will have PD, and about 1 in 1000 will have either MSA or PSP. MSA and PSP are often mistaken for PD, but are distinct conditions. People affected by these conditions experience (in various combinations) stiffness, tremor, immobility, loss of balance, and falls. In the later stages, the complexity of symptoms greatly impairs quality of life for the people living with these conditions.

Although drug treatments are able to relieve symptoms in the initial stages of PD, as the condition progresses people with PD increasingly experience unpredictable swings in response to treatment compounded by depression, difficulty sleeping, confusion, and memory problems. For people with MSA and PSP these difficulties are more acute, as there are no effective drug treatments, and few people survive longer than 10-12 years after diagnosis. Although care from health and social services professionals and support from user groups ameliorates the plight of people with these conditions, they seldom have access to palliative care, and quality of life is poor. Quality Requirement 9 of the National Service Framework for Long Term Neurological Conditions recommends that palliative care services should be available for people with conditions such as this, but currently very few have access to palliative care. This is no robust evidence on the palliative needs of people with these conditions.

Aims: This research sets out to gain better understanding of 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
  • providing flexible, personalised support

from health and social services, the voluntary sector (user groups, support groups), and resources within families living with these conditions.

The overall aim is to improve quality of life for people living with these conditions.

What we will do and how we will do it: The proposed research builds on an existing partnership between the voluntary sector and our research groups in palliative care and neurology, through the King's Centre for Palliative Care in Neurology. The King's team combines clinical and research expertise in palliative care, neurology, psychology, health economics, rehabilitation, and statistics.

We will invite 20 people with PD, 20 with MSA and 20 with PSP (and their carers) to participate in a series of detailed interviews and assessments over one year. For each of the participant pairs we will make assessments at 4 month intervals over one year. There are two components to this research. The first component is a 'quantitative' approach, involving a number of questionnaires that will provide measures of symptom severity, quality of life, mental functioning, sleep quality, palliative care needs, quality of life, and the costs of providing care (including he costs to carers). Although these questionnaires are detailed and take several hours to complete, our research fellow will visit the participants at home, and will take care to pace the interviews appropriately, with frequent rests. We have wide experience of this type of research.

The second component involves 'qualitative' research, in which people affected by PD, MSA and PSP will describe their experiences, their needs, and their attitudes to choices about palliative and end-of-life care. The two approaches are complementary.

We will work closely with the relevant user groups through a Project Advisory Group.

Project outputs: The outcome of our research will be a comprehensive understanding of the needs of people living with these severe, progressive and long-term conditions, and of the relationship between complex symptoms and quality of life. This information will allow those developing palliative and multi­disciplinary services to do so on the basis of firm evidence.


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