Parkinson's disease: patient and general practitioner perspectives on the role of primary care

Abstract

Background. Specialized Parkinson's disease (PD) care offers advantages to patients. However, specialized health care providers may be unaware of patients' personal context and comorbidity, leading to conflicting treatment regimens. Patients may benefit from a more holistic approach. Objective. To clarify the role community-dwelling PD patients see for general practitioners (GPs) in PD care and to clarify the role GPs see for themselves. Methods. Qualitative interview study with 16 community-dwelling PD patients and 12 GPs in the Netherlands, using a constant comparative approach to analysis. Results. Patients expressed a preference for self-management and autonomy in decisionmaking. GPs chose a limited, reactive position in early-stage PD care to stimulate patient autonomy. Moreover, GPs felt insufficiently competent to extend their role. Patients also felt GPs lack expert knowledge and skills; they focus on their neurologist for PD care. In addition, GPs observed patients might not realize what accessory role the GP could have, a role GPs described as essential in being aware of patient's well-being. Patients did not describe additional roles for the GP in more advanced disease, whereas GPs mentioned a shift towards a more proactive and extended role. Conclusion. Patients and GPs see a limited role for the GP in early-stage PD care because of patient autonomy and GP's lack of specific knowledge and skills. However, GPs should feel more confident of the added value of their generalist approach to care for patients with a complex chronic disorder as PD. If generalist and specialized care reinforce each other, PD patients benefit.