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Exploring and understanding the scope and value of the Parkinson’s nurse in the UK (The USP Project): a realist economic evaluation protocol
  1. Sarah Brown1,
  2. Sonia Michelle Dalkin2,
  3. Angela Bate1,
  4. Russ Bradford3,
  5. Charlotte Allen3,
  6. Katie Brittain4,
  7. Amanda Clarke5,
  8. Annette Hand1
  1. 1Nursing, Midwifery and Health, Northumbria University, Newcastle Upon Tyne, UK
  2. 2Faculty of Health and Life Sciences, Northumbria University, Newcastle Upon Tyne, UK
  3. 3Parkinson’s Concierge, London, UK
  4. 4Department of Nursing, Midwifery and Health, Northumbria University, Newcastle Upon Tyne, UK
  5. 5Health and Life Sciences, Northumbria University, Newcastle Upon Tyne, UK
  1. Correspondence to Dr Annette Hand; a.hand{at}northumbria.ac.uk

Abstract

Introduction There 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 analysis Realist 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 dissemination Northumbria 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.

  • parkinson's disease
  • neurology
  • health economics
https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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Footnotes

  • Twitter @SarahBrown247, @SoniaDalkin, @PC3652, @AnnetteHand13

  • Contributors AH conceived the study and developed the study protocol. SB led the writing of the manuscript with input from SD, AB, AH, KB, AC, RB and CA. SMD and AB developed the realist economic evaluation component of the methods. All authors reviewed and critiqued the manuscript and approved the final published version.

  • Funding This study is funded by Parkinson’s UK (Grant reference: G-1807) and the sponsor is Northumbria Healthcare NHS Foundation Trust.

  • Disclaimer The views expressed in this paper do not necessarily represent those of the funders. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods and analysis section for further details.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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