Defining and better meeting the palliative care needs of people with late stage Parkinson's Disease (PD), Multiple System Atrophy (MSA) and Progressive Supranucleur Palsy (PSP)
PN Leigh, Irene J Higginson, Tariq Saleem, N Donaldson, Paul McCrone, C Clough, KR Chaudhuri, Lynne Turner-Stokes, Rachel Burman, R Brown
Our first studies set 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 we found:
The studies used a mixed methods approach, with two simultaneous components: a longitudinal survey and qualitative interviews with patients and carers, and have been published.
- Physical, emotional, social, healthcare and information needs of people living with PD, MSA or PSP, which are as severe as for people affected by cancer
- That over time these needs usually continued or became more severe
- That simple early assessment of symptoms and problems could predict later difficulties with quality of life. These assessments could be used to trigger referral
- That informal care costs were high and often as much as formal care costs
- That those people affected by MSA or PSP were much more likely experience deterioration, and should be targeted for early support.
Saleem TZ, Higginson IJ, Chaudhuri KR, Martin A, Burman R, Leigh PN. Symptom prevalence, severity and palliative care needs assessment using the Palliative Outcome Scale: a cross-sectional study of patients with Parkinson's disease and related neurological conditions. Palliat Med. 2013 Sep;27(8):722-31. PubMed PMID: 23208011. Epub 2012/12/05. eng.Higginson IJ, Gao W, Saleem TZ, Chaudhuri KR, Burman R, McCrone P, et al. Symptoms and quality of life in late stage Parkinson syndromes: a longitudinal community study of predictive factors. PLoS One. 2012;7(11):e46327. PubMed PMID: 23144781. Pubmed Central PMCID: 3492372. Epub Nov 13. eng.
Sleeman KE, Ho YK, Verne J, Glickman M, Silber E, Gao W, et al. Place of death, and its relation with underlying cause of death, in Parkinson's disease, motor neurone disease, and multiple sclerosis: A population-based study. Palliat Med. 2013 Jun 4. PubMed PMID: 23737036.
This research is now being taken forward in Project OPTCARE NEURO, which is designed to test early short term integrated palliative care for people severely affected by neurological conditions.