Exploring and understanding the scope and value of the Parkinson’s nurse in the UK (The USP Project): a realist economic evaluation protocol

Abstract

IntroductionThere are multiple configurations of specialist nurses working in the field of Parkinson’s. Parkinson’s Nurse Specialists (PNSs) are recognised as playing a pivotal role; however, there is little published evidence to demonstrate their effectiveness. Further evidence is needed to establish which aspects of the PNSs provide the greatest benefit to people with Parkinson’s and their families, and the cost-effectiveness of different models of care.Methods and analysisRealist approaches explain how and why programmes work (or not) through striving to answer the question: what works, for whom and under what circumstances. This research uses a realist evaluation and aims to integrate an economic analysis within the realist framework. We refer to this as ‘realist economic evaluation’. It comprises four phases: (1) developing resource-sensitive initial programme theories (IPTs) using surveys to gain a better understanding of the role and impact (costs and benefits) of the PNSs; (2) testing the IPTs through qualitative interviews and quantitative data analysis; (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. The IPTs will draw on both quantitative and qualitative data. The result of the study will be a series of refined programme theories, which will explain 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.Ethics and disseminationNorthumbria University, the Health Research Authority and Health and Care Research Wales have approved this study. Key findings will be disseminated throughout the duration of the project online and through social media, and via annual and regional Parkinson’s meetings and the Parkinson’s UK Excellence Network. Academic dissemination will occur through publication and conference presentations.

Unpacking economic programme theory for supervision training: Preliminary steps towards realist economic evaluation

“…( However, conducting this preliminary REE-and especially integrating the economic analyses with our realist analysis, 20 and staying internally coherent with the principles of realist rather than economic evaluation 10 -was challenging. Indeed, as previously mentioned, REE is in its infancy.…”

“…Indeed, as previously mentioned, REE is in its infancy. 10 Although several REE protocols have been published recently in health services research, 20,43,44 there is considerable variation in the extent to which economic analyses are integrated (or not) with realist frameworks. Furthermore, worked examples of REE are extremely rare, 10,19 and to date, are non-existent in the health professions education literature.…”

“…3,6 Interestingly, none of the recent commentaries or guides on economic evaluations in health professions education research mention REE. 3,4 This is perhaps because of three key reasons: (1) realist evaluation has only become popular in medical education recently [13][14][15][16][17] ; (2) the REE literature is in its early infancy 10,[18][19][20] ; and (3) economic and realist evaluations differ considerably with respect to their theoretical bases, conceptions of causality, research and policy aims, data types, optimal study designs and generalisability/transferability concerns. 10,18 See Box 1 for a glossary of realist and economic terms.…”

“…23, p. 83 Realist economic evaluation (REE): realist evaluation integrating economic analyses within the realist framework. 20 Realist evaluation: a theory-driven methodological approach to evaluate a programme by unpacking what about the programme works (or fails to work), for whom and under what circumstances, and why. 21 Realist interview: an interview method to construct data in realist methodology whereby the interviewer purposefully tests and refines their conjectured programme theory, or develops new theory while still maintaining the flow of conversation with the interviewee.…”

Covid-19 and Parkinson's disease: Nursing care, vaccination and impact on advanced therapies

“…The PNS role has been developed with the aim of improving PD prognosis, through better education and support, and reducing the impact of PD on patients, but also their families and caregivers. A task force for the PD Society has suggested that each individual with PD will be assigned a healthcare professional, holding a leading role in coordinating the patients’ care and treatment changes in collaboration with a multidisciplinary team ( Brown et al, 2020 ). Today, the PNS role is still recognized as pivotal ( Cook, McNamee, McFetridge, & Deeny, 2007 ) with around 450 PNSs working in primary, secondary, and tertiary care settings in the UK.…”