Abstract
Introduction
This project aims to explore the diagnostic experiences of people with Parkinson’s disease (PD) and compares this with the experiences of healthcare professionals diagnosing PD, to inform areas of improvement to increase patient satisfaction.
Method
A quality improvement project conducted using two surveys, one aimed at clinicians, and one aimed at people with PD, which were distributed via email and in person, to allow insights to be gained from conversation.
Results
31 patients and 24 professionals completed the surveys.
63% of patients were happy with the diagnosis communication, and 83% felt they received adequate information. This aligns with clinician perspectives, with 66% feeling that they meet the needs of patients well when diagnosing PD.
60% of patients want comprehensive information about PD at diagnosis, with focus on disease progression. In contrast clinicians were more likely to focus on the DVLA, with follow up information given one month after diagnosis. Patients were most likely to use the internet as their primary source of information on PD. Although this was rated as being useful, it relies on internet access and computer literacy. In contrast, the majority of clinicians would recommend follow up with a PD nurse specialist for patients to gain information. 63% of patients want to learn more about PD, again with emphasis on disease progression (78%) and treatment options (56%), including curative research.
Both patients and clinicians would prefer face-to-face informative sessions, ideally in a one-to-one setting.
Conclusion
Patient satisfaction can be increased by giving patients a comprehensive amount of information at diagnosis, with emphasis on the progression of the disease, followed up by accessible information to be read at home. Informative sessions should be long enough to allow time for both patient and clinicians differing priorities, and should be face to face, in a one-to-one session.