Date: Monday, June 20, 2016
Session Title: Quality of life/caregiver burden in movement disorders
Session Time: 12:30pm-2:00pm
Location: Exhibit Hall located in Hall B, Level 2
Objective: To document experience of service provision by people with Parkinson’s disease (PD) care in Europe.
Background: Developed by the EPDA, My PD Journey is a multi-stakeholder project designed to assist those people affected by Parkinson’s disease.
Methods: A survey with people with Parkinson’s (PwPs) (n=1,776) and carers, and in-depth qualitative interviews (n=194) were conducted in 11 European countries. Outcome was assessed using the EQ-5D and a composite measure of satisfaction with care. Regression analysis was used to assess association of reported experiences and outcomes. The principles of Grounded Theory were used throughout the qualitative research.
Results: Mean age at diagnosis was 58 years and disease duration 6 years. Time to referral for diagnosis was < 4 months in 80%. At time of diagnosis a third felt that they did not have enough time to ask questions. However, the amount of information given correlated with satisfaction with the first consultation (p<0.01). Follow-up appointments with a specialist were in <1 year intervals in >40% although more frequent reviews were associated with greater satisfaction with care (p<0.01). The greatest satisfaction with care was reported in patients’ involvement in decisions (58%), and the lowest in accessibility of treatments when needed (20%) and the way health-care professionals work together (21%). A commonly reported problem in the qualitative interviews was lack of PD-knowledge amongst health care professionals, e.g. during admissions. The role of a care coordinator with adequate PD experience, availability and time, to coordinate and provide access to treatment and care was regarded as a key requirement by both PwPs and carers, and was associated with greater satisfaction with care (p=0.001).
Conclusions: To provide optimal management of people with PD there remains a need for
– timely access to a PD specialists for diagnosis, medication reviews and treatments
– access to a continuing point of contact for a health-care professional with experience in PD to facilitate timely interventions
– a central coordinator of care with PD expertise, enabling appropriate referrals
– improved collaboration between primary and secondary care. e.g. using an Individual Care Plan
– training on PD for Nursing Homes and Hospital staff
– greater access to information for PwPs and carers at diagnosis and during follow-up.
To cite this abstract in AMA style:A. Schrag, O. Rascol, R. Merritt, S. Hotham, G. Bartl, L. Graham, On behalf of the European Parkinson's Disease Association. My PD Journey: Experiences reported by people with Parkinson’s disease in several European countries – A quantitative and qualitative study [abstract]. Mov Disord. 2016; 31 (suppl 2). https://www.mdsabstracts.org/abstract/my-pd-journey-experiences-reported-by-people-with-parkinsons-disease-in-several-european-countries-a-quantitative-and-qualitative-study/. Accessed December 7, 2023.
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