The primary research included a survey and in-depth interviews across 11 European countries with people with Parkinson’s, their carers and healthcare professionals.The featured countries were Denmark, France, Germany, Hungary, Ireland, Italy, the Netherlands, Slovenia, Spain, Sweden, and the UK.
The primary research study aimed to provide a ‘snapshot’ of the therapies, treatments and management that people with Parkinson’s (PwPs) and their carers had access to within the selected countries. In addition, the study aimed to gain an in-depth understanding of PwPs’ and carers’ experiences of their national healthcare systems, and what treatments and therapies had benefited them the most.
By gaining insights into the current situation and by understanding the unmet needs, we believe cost-effective recommendations can be made to enhance the quality of life of all affected by the disease.
The secondary research identified compelling examples of good practice from existing care pathways, care systems, feedback from multiple Parkinson’s stakeholders, and a literature review of unpublished ‘grey’ literature. It also included evidence-based recommendations from existing academic and scientific research papers, and relevant European and international guidelines.
The findings present a more comprehensive picture of the Parkinson’s care and management within Europe compared with previous studies. It provides a strong foundation that will influence future My PD Journey discussions and activities.