Defining the palliative care needs of people with late-stage Parkinsons Disease, Multiple System Atrophy and Progressive Supranuclear Palsy

Lead Researcher: Prof. P Nigel Leigh, Dept of Clinical Neuroscience, Kings College London
Start Date: June 2007. End date Summer 2010
Researcher Tariq Saleem, Email: [email protected]


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, which are often mistaken for PD, but are distinct conditions in themselves. People affected 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 them.
Although drug treatments are able to relieve symptoms in the initial stages of PD, as the condition progresses, people affected will increasingly experience unpredictable swings in response to treatment. This can be 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 can help, they seldom have access to palliative care, and quality of life can be poor. Quality Requirement 9 of the NSF for LTNCs recommends that palliative care services should be available for people with conditions such as this, but currently very few have access to them. This is no robust evidence on the palliative needs of people with these conditions.


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:
1) enhancing quality of life
2) providing flexible, personalised support from health and social services, the voluntary sector (user groups, support groups), and resources within families 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 costs to carers). Although these questionnaires are detailed and take several hours to complete, our researcher 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.

Results of the research

We will build up an evidence base, based on 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.

Progress reports

Winter 2007 Update

Tariq Saleem was appointed to work on this project in June 2007. Following initial feedback from patients and carer-givers, the questionnaire was discussed with the project management group and revisions made to simplify interviews while gathering the necessary information. Ethical approval was obtained for the changes made.
We have now identified  our participants for the research with help from the movement disorder team at King’s College Hospital and interviewing is going well (15 patients and their care-givers have been interviewed). Interviews are taking place all over the South East of England. Participants are being followed-up at 4 monthly intervals and have been most helpful in continuing their participation. An advisory group, made up of those with personal experience of living with these conditions, or representing the relevant support Charities, will meet early in January 2008 to discuss the emerging data and give their views on developing the qualitative interview phase.
We maintain close liaison with Diana Jackson working on the Support for Carers study. Some questionnaires are common to the two projects and we have had meetings to explore potential ways to combine analyses from the two studies. Overall, progress has been excellent with enthusiastic and committed participation from those experiencing these conditions. Further details of the study can be found on our webpage:

Summer 2008 update

46 people with LTNCs and 33 carers have now completed base-line interviews in their homes. The target is to recruit 60 people by December 2008 and to follow up each participant for at least a year.  We have also completed second interviews with 15 patient/carer pairs 4-6 months after we originally saw them, and 10 patient/carer pairs have completed third interviews.
We have now started entering data onto a SPSS* database. In November 2008 we will start conducting preliminary/exploratory analysis for base-line cross-sectional data. This, along with consultation with our patient’s advisory group, will inform our interview topic guide for the qualitative part of the study.  Follow-up interviews for the quantitative part of the study will continue until January 2010.
* SPSS is the proprietary name for a data-management programme: Statistical Package for the Social Sciences.

Further information

Download a PowerPoint presentation Palliative care Oct 08  which summarises our work to date

Summer 2009 Update

Data on 50 patients was recently reported at a palliative care conference in Austria.
The main findings were:

The concerns of this population, reported in POS, extends beyond these physical symptoms and problems. Over 50% reported having anxiety and depression. 25% said they did not have anyone to share how they were feeling. The mean POS score was moderate, approaching 14 out of a maximum of 40, suggesting palliative care input might be helpful.
These preliminary results suggest that symptom-control-needs are high for patients with advanced Parkinsonism. Understanding these patterns of symptoms will inform the adaptation of standard palliative care services, which have been developed largely for advanced cancer patients and not for those with neurological conditions.
We have now recruited 75 patients (cohort) into the longitudinal study who are being followed up for 12 months with symptom assessments every 4 months to examine changes over time.

Winter 2009 Update

All the baseline interviews have been completed. Recruitment of patients and their carers at baseline was completed for the 3 conditions (PD, MSA, PSP) at the end of Jul 2009. There are 80 patients and their carers (n = 55) in the longitudinal study and follow up interviews will continue until May 2010.

Work continues on entering and analysing the data as well as the ongoing qualitative interviews. Recorded qualitative interviews are being transcribed, along with field notes to provide further exploration of the emerging quantitative data.

Although our Advisory Group (PAG) has not met we have been in contact with members individually, and updates have appeared in their newsletters. We wanted to focus on ensuring recruitment and data collection and it was proving difficult to find a convenient date. In addition, it would not have been productive for PAG to meet until after baseline data was collected, so the next meeting is planned for 2010.

As reported previously, recruitment has been very time consuming, both in identifying potential participants attending King’s College Hospital out-patients and movement disorder clinics. There is no database of patients so the researcher has had to attend all clinics and identify patients meeting the selection criteria.  Setting up home visits to interview patients throughout the South East of England has been challenging. In particular, it has been necessary to conduct up to 3 visits, at times, to complete the questionnaire. This was due to respondents' ill health, communication difficulties, being fatigued, an off-state (due to drugs) or other interruptions such as visitors.  However, most participants are happy to be in the longitudinal study as long as they are given time to respond at their own pace.  It has proved important to allow enough time and support for people with Bradykinesia (slowness of movement and thinking) along with speech problems to voice their opinions in this study.

Summer 2010 update

The follow-up interview schedule has proved challenging to organise and has taken more time than originally planned. A number of patients recruited into the study have died (n = 9). Several people have cancelled due to; being too ill to be interviewed, being in hospital, having guests over, or being away on holiday. The nature and course of Parkinson’s disease has meant that most participants have required two visits to complete the questionnaires, with frequent cancellations at short notice. To reduce the burden a shortened version of the interview schedule has been used which captures the main research aims.

Most participants prefer to talk about their situations in person.  All are given an opportunity to tell their story and this data is being recorded.  These extensive field notes will, together with the data, provide rich qualitative data for analysis for themes. The value and importance of capturing the experiences of people living with advanced Parkinsons was highlighted in previous PAG (user involvement) meetings.

Our formal PAG meeting (user involvement) has been delayed due to time constraints and will be arranged when all data (quantitative and qualitative) has been entered and analysed. PAG comments will then be incorporated into the emerging findings prior to drafting the final report.


The following two abstracts were accepted for presentation at the 6th Research Congress of the European Association for Palliative Care, Glasgow, UK, June 10-12. 

Presentation 1: Symptom prevalence and severity of non-motor symptoms in people affected by advanced Parkinson’s disease and related disorders. Can palliative care help?

Saleem T, Higginson IJ, Leigh PN, Chaudhuri R, Martin Anne, Clough C, Burman R 

Background: Traditionally, most of the emphasis in the management of Parkinson’s disease has been placed on dealing with motor impairments. With the current range of drugs, these motor impairments and the motor complications that they give rise to can be managed reasonably well. In recent years, it has been realised within neurology it is now the non-motor disorders of PD that cause the most deterioration in quality of life. Both clinical and research attention is now being turned to these non-motor conditions.

Aims: This study sought to assess non-motor symptom prevalence and severity and wider concerns of patients with advanced PD and related movement disorders.

Methods: Cross-sectional data was collected on 30 non-motor symptoms and problems of patients in the last month as self-reported to interviewer in their homes on two validated assessment tools (POS used in Palliative care and NMS scale used in neurology settings).

Results: 80 patients were included, mean age 68 yrs; advanced stages of disease (Hoehn &Yahr stages 3 to 5) reported a mean of 14 non-motor symptoms. Three symptoms affected more than 80% of patients: pain, fatigue and feeling sleepy. Seventeen further symptoms were reported in between 50% and 80%: depression, anxiety, memory problems, concentration difficulties, lightheaded/dizzy, constipation, shortness of breath, sleeping problems, bladder and bowel problems, difficulty communicating, swallowing, dribbling, restless legs, swelling of legs and sexual problems. Ten symptoms occurred in less that 25%: nausea, poor appetite, pressure sores, hallucinations, delusions, staying awake, excessive sweating, double vision, talking/moving about in sleep and frightening dreams.
Conclusion: Many non-motor symptoms and problems in advanced stages of PD need to be assessed and managed. Understanding these patterns of symptoms might inform the adaptation of palliative care to help manage these neurological conditions.

Presentation 2. Unknown group of movement disorders with palliative care needs – Parkinson’s plus syndromes: Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP)

Saleem T, Leigh PN, Higginson IJ, Chaudhuri R, Martin A,

Back ground: MSA and PSP are still not well-known movement disorders. The disease progresses quite rapidly, there is a decreased life expectancy, no cure and a palliative situation eventually emerges.    Little is known about patients own evaluation of their illness.

Aim: 1) The symptom prevalence and severity with which MSA and PSP; 2) assessment of palliative care needs and quality of life.

 Method:  34 patient (PSP = 17, MSA = 17) recruited at a specialist neurology movement disorder centre. Symptom prevalence and severity were measured using neurology (NMS quest) and palliative care (POS) assessment tools. Quality of life: EQ5-D and PDQ-8.   

Results:  Quality of life measures revealed nearly all had problems getting around in public places (97%), difficulty dressing (84%), problems with performing usual activities (80%) and felt embarrassed due to their condition in public (54%).  Symptoms measures: Motor problems:  legs/walking (90%), arms or hands (74%), loss of balance, dizzy (58%), falls (52%). Pain or discomfort was high (88%).  Out of these (38%) reported having had severe pain in last 2 weeks.  Other physical symptoms included: fatigue /lack of energy (86%), day time sleepiness (82%), cramps and spasms (79%), bladder problems (71%), constipation (68%), Swallowing (68%), sexual problems/impotence (69%), sleep difficulties (65%),  bowel problems (59%), visual problems (52%). Communication difficulties due to speech problems (82%). Psychological and social problems: feeling anxious or worried about their illness (94%), depression (71%). Cognitive problems:  difficulty concentrating (65%), failing memory (48%), hallucinations (29%). Information needs:  Patients wanted more information and explanation of their condition (54%). Palliative assessment using POS was moderate (mean = 14.5, SD = 6.9) out of a maximum of 40.

Conclusions: Both MSA and PSP are rapidly progressive diseases, dominated by high symptom burden, which could be helped with palliative care input to support patients and their families, both physically and emotionally. Early palliative care input might be helpful so that all options can be discussed before they are required as currently happens with motor neurone disease, giving the patient, and his (or her) family, time to plan and come to terms with their situation.

The final report for this study is due by the end of the year.




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