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General practice / Family practice
Protocol
Transitions in Parkinson's disease in primary care: protocol of a longitudinal mixed methods study
  1. Annette O A Plouvier1,
  2. Tim C Olde Hartman1,
  3. Chris van Weel1,2,
  4. Bastiaan R Bloem3,
  5. Antoine L M Lagro-Janssen1
  1. 1Department of Primary and Community Care, Radboud university medical center, Nijmegen, The Netherlands
  2. 2Australian Primary Health Care Research Institute, Australian National University, Canberra, Australia
  3. 3Department of Neurology, Parkinson Center Nijmegen, Donders Institute for Brain, Cognition and Behaviour, Radboud university medical center, Nijmegen, The Netherlands
  1. Correspondence to Annette O A Plouvier; Annette.Plouvier{at}radboudumc.nl

Abstract

Introduction Parkinson's disease affects many aspects of the lives of patients and their relatives. Patients must adapt continuously to disabilities that necessitate changes in (medical) support, such as domestic adjustments, involvement of (non)professional caregivers or admission to hospital. Such changes mark a transition: a transfer of a patient between levels or locations of care. Transitions are likely to be multifold and complex, given that Parkinson's disease care extends across all echelons of healthcare. Patients and relatives are vulnerable during a transition, which imposes risks for their safety and quality of life. Guidance by the general practitioner, who knows the preferences of the patient, can help to overcome challenges associated with a transition. However, patient-centred primary care requires insight into the transitions patients with Parkinson's disease encounter. We aim to examine these transitions and the way patients, relatives and general practitioners experience them and cope with them. Moreover, we will study the patients’ expectations of their general practitioner during a transition and the general practitioners’ views on their role.

Methods and analysis A longitudinal mixed methods study will be conducted, using qualitative research methods combined with quantitative data as a validated questionnaire on quality of life. Patients will be asked to make a video diary every 2 weeks for a period of 1 year. Once they encounter a transition, patients and their general practitioners will be interviewed to identify causes and consequences of the transition. The verbatim transcripts of the videos and interviews will be analysed according to the principles of constant comparative analysis.

Ethics and dissemination Ethical approval was not needed according to Dutch legislation. Informed consent of patients, relatives and general practitioners will be obtained. We will disseminate the results in peer-reviewed journals, at research conferences and on the website of the Dutch Parkinson's Disease Association.

  • PRIMARY CARE
  • QUALITATIVE RESEARCH

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

http://dx.doi.org/10.1136/bmjopen-2014-007171

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