Objective: To identify areas in which patient experience of being diagnosed with Parkinson’s can be improved.

Background: Receiving a Parkinson’s diagnosis can leave patients feeling vulnerable and confused. Diagnosis experience can colour subsequent approach to the condition. If done well, imparting a diagnosis can ensure people with Parkinson’s (PwP) feel supported, empowered and fully involved in the management of their condition.

Methods: A 17-item questionnaire was designed by clinicians and PwP to evaluate experience of the diagnosis consultation; the structure was based on the UK Parkinson’s Excellence Network’s Document (2015), ‘Improving the diagnosis experience for people with Parkinson’s’. 100 questionnaires were sent to patients diagnosed within the last year via community Parkinson’s nurses across the South West of England.

Results: 31 responses were received; 7 were discounted as either their diagnosis was not within the previous year, or the questionnaire was incomplete. Data were analysed from the remaining 24 respondents. Average age was 67.2 yrs. 73% were male. Structure of clinic: 50% of patients were not told to bring someone with them to their consultation, and of those, 73% would have liked to have someone there with them. 92% of patients thought their consultation time was adequate. 95% were told they were going to have a follow-up appointment, however 33% were not told when this would be. Approach and Communication: patients gave high scores for their doctor listening during the consultation (mean 4.1/5) and for explaining Parkinson’s to them (mean 4.2/5). 92% of doctors delivered the diagnosis sensitively. 25% of patients said they were not involved in treatment decisions. Access to information: a copy clinic letter was not received by 26% of patients. 29% of patients did not receive written information about Parkinson’s or Parkinson’s nurse contact information. 52% of consultations did not include an explanation of the support available from Parkinson’s UK.

Conclusions: Physicians imparting the diagnosis should have access to written materials for patients, including information about Parkinson’s and how to access Parkinson’s UK and specialist nurses. Physicians should fully explain treatment choices to patients and ensure patients are copied into clinic letters. Where possible, patients should be encouraged to bring a companion to the consultation. Follow-up arrangements should be timely and clearly communicated.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/improving-the-experience-of-diagnosis-in-parkinsons-disease/