The diagnostic pathway of Parkinson’s disease: understanding patient perspectives in Australia

Abstract

There is limited data about experiences of people with Parkinson’s (PwP) in Australia. This study, initiated and co-designed by PwP, surveyed 385 participants nationally (335 fully completed the questionnaire). Participants living in capital and regional city centers reported satisfaction with clinical care during diagnostic consultation at approximately 40%, with satisfaction less in rural areas (26%). 68% of participants reported inadequate involvement in discussions about treatment and care planning and 77% were dissatisfied with the support following diagnosis. Respondents reported low referral rates to allied health services such as physiotherapy (22%) and mental health services (17%). Feedback indicated support could improved by increased access to Parkinson’s disease Clinical Nurse Specialists and to educational resources and support. Findings highlight the need to establish Australian guidelines for Parkinson’s clinical management, greater resourcing for clinicians including development of educational programs, and creation of Australian-centric educational resources to improve quality of care for PwP.