Objective: This paper will present evidence from the first stakeholder-driven UK study to explore in-depth the role and value of the Parkinson’s Nurse Specialist (PNS) from the perspective of the nurse, people with Parkinson’s (PwP), and their carers.

Background: National guidelines on Parkinson’s Disease (PD)[1] recommends that PwP should have regular access to: clinical monitoring and medication adjustment; a continuing point of contact for support; and reliable information about clinical and social matters. These resources can be provided by a PNS; a role that was created in response to recommendations from previous research.[2] The PNS role aims to improve prognosis, through better education and support, and to reduce the impact of PD on people, their families and carers. The PNS is recognised as playing this pivotal role in the care of PwP [4], with over 400 PNS working in the UK but there is little published evidence to demonstrate their effectiveness.

Method: Realist approaches strive to answer the question: what works, for whom and under what circumstances [5]. This research used realist evaluation integrating an economic analysis. It comprises four phases: (1) developing resource sensitive initial programme theories (IPTs) using surveys to gain a better understanding of the role and impact of the PNSs; (2) testing the IPTs through qualitative interviews; (3) evaluating the cost and resource use implications alongside the benefits associated with the role of the PNSs, and (4) iteratively refining the IPTs throughout the project. Drawing on both quantitative and qualitative data, the research explains how specialist nurses work in the field of Parkinson’s in the UK, what impact they have on people with Parkinson’s and their families and carers, and at what cost [6].

Results: In total 1232 participants completed the survey, 45 participants took part in in-depth interviews. Three groups of IPTs were identified through the analysis which set out the, contexts (C) or conditions, mechanisms (M), and outcomes (O) or impacts, known as CMO configurations. Processes of generative causation where tracked for:
1) providing expert counsel
2) conduit of care
3) pharmacological support
The research identified pathways to positive outcomes, including, improved health outcomes, improved quality of life and cost effectiveness.

Conclusion: Access to a PNS has positive health outcomes for PwP, and reduces PwP contact with other services. 

References: 1] NICE Guideline (NG71). Parkinson’s Disease in adults. 2017; Available from: https://www.nice.org.uk/guidance/ng71.
[2] MacMahon, D.G. and S. Thomas, Practical approach to quality of life in Parkinson’s disease: the nurse’s role. J Neurol, 1998. 245 Suppl 1: p. 19-22.
[3] Thomas S, MacMahon DG, and Maguire J., Moving and shaping: a guide to commissioning integrated services for people with Parkinson’s disease. 2006, Parkinson’s Disease Society: London.
[4] Cook, N., et al., The role of a Parkinson’s disease nurse specialist as perceived by professionals in Northern Ireland. British Journal of Neuroscience Nursing, 2007. 3(10): p. 472-479.
[5] Pawson, R. and N. Tilley. (1997). Realistic Evaluation. London: Sage.
[6] Brown, S., Dalkin, S., Bate, A., Bradford, R., Allen, C., Brittain, K., Clarke, A., & Hand, A. (2020). Exploring and understanding the scope and value of the Parkinson’s nurse in the UK (The USP Project): a realist economic evaluation protocol. BMJ Open, 10(10), [e037224]. https://doi.org/10.1136/bmjopen-2020-037224

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-usp-project-understanding-the-scope-and-value-of-parkinsons-specialist-nursing/