title: Transitions in Parkinson's disease in primary care: protocol of a longitudinal mixed methods study.
abstract: BACKGROUND
  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
  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.
  
  
  BACKGROUND
  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.
authors.affiliation: Department of Primary and Community Care, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Annette O A
authors.initials: AO
authors.lastname: Plouvier
authors.affiliation: Department of Primary and Community Care, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Tim C
authors.initials: TC
authors.lastname: Olde Hartman
authors.affiliation: Department of Primary and Community Care, Radboud university medical center, Nijmegen, The Netherlands Australian Primary Health Care Research Institute, Australian National University, Canberra, Australia.
authors.forename: Chris
authors.initials: C
authors.lastname: van Weel
authors.affiliation: Department of Neurology, Parkinson Center Nijmegen, Donders Institute for Brain, Cognition and Behaviour, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Bastiaan R
authors.initials: BR
authors.lastname: Bloem
authors.affiliation: Department of Primary and Community Care, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Antoine L M
authors.initials: AL
authors.lastname: Lagro-Janssen
mesh_terms: D018450:Disease Progression; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D010300:Parkinson Disease / Q000175:diagnosis* / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life; D012107:Research Design; D000069341:Transitional Care; D014741:Video Recording / Q000379:methods
keywords: PRIMARY CARE; QUALITATIVE RESEARCH