Objective: To evaluate if the information provided to a person with Parkinson’s (PwP) is relevant and appropriate for that individual. To also consider the need for materials to be adapted depending on educational background to increase knowledge and understanding and promote a patient centric approach.

Background: Parkinson’s disease (PD) is progressive neurological condition with many motor and non motor symptoms manifesting differently in each individual. In the UK the Parkinson’s disease nurse specialist (PDNS) play a fundamental part in the ongoing process of learning, providing information in a timely manner to help the PwP understand all aspects of their condition. There is a need to evaluate if the current process is effective and meets recommended standards of good practice.(1)

Methods: In this on going project 3 PDNS from both primary and secondary care will survey and evaluate the responses of 60 patients with a new diagnosis of PD less than 3 years ago (2). PwP will be provided with a 10 point questionnaire to determine their views on the quality and format of information provided at time of diagnosis, that was intended to increase the knowledge and understanding of their condition.

Results: To date 6 patients (50% male and 50% female; mean age 59 years (± 14years). Mean disease duration 2 years (± 1 years); Hoehn and Yahr 1.5 (range 1.0-2.0). 16.6% had less than 12 years of education. 50%were retired, 33.3% were in professional occupations and one was a manual worker. All participants reported that written information to support and reinforce discussions would be beneficial. 8.3% confirmed that they had shared the information with partners/family members.

Conclusions: Initial results suggest that appropriate information in a variety of formats could be beneficial at the time of diagnosis fro PwP, to help them gain better understanding of their condition. In order to facilitate an effective process for sharing information, the PDNS needs to consider the most appropriate format, to explain concepts relating to PD that can be both complex and challenging. This on going project will help to tailor an individualised approach, ensuring the right information for the right person at the right time.

References: 1 Parkinson’s disease in adults – NICE guideline [NG71] July 2017. 2 Clinical stages of PD – MacMahon and Thomas (1998).

« Back to 2018 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/an-evaluation-of-the-availability-and-format-of-information-provided-to-patients-who-have-a-new-diagnosis-of-parkinsons-disease-pd/