RHAPSODY is an EU Joint Programme Neurodegenerative Disease Research (JPND) project. It is supported for a period of three years through the six following funding organisations under the aegis of JPND: France, French National Research Agency; Germany, Federal Ministry of Education and Research; The Netherlands, The Netherlands Organisation for Health Research and Development; Portugal, Foundation for Science and Technology; Sweden, Swedish Research Council; United Kingdom, Economic and Social Research Council.
(JPND is the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases. JPND aims to increase coordinated investment between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases.)
RHAPSODY has four major aims. First, to evaluate the policy and information environment that provides the framework for the treatment and care of people with YOD and their carers in six European countries. Second, to assess the specific and individual needs of this particular group. Third, to use this information for designing an internet-based, multimedia, interactive learning course for carers of people with YOD. Fourth, to test this learning course in a pilot study at three sites in France, Germany and the United Kingdom.
To achieve these ambitious aims, a multidisciplinary consortium of researchers has formed. They represent excellence in the fields of psychiatry, neurology, neuropsychology, neuroscience, health economy, multimedia design and information systems. The consortium includes partners from academia and industry as well as a patient and carer advocacy organisation. RHAPSODY integrates research methods and strategies of health systems research, qualitative social research, and clinical trials.
The results of RHAPSODY will provide a basis for developing strategies to improve treatment and care for people with YOD and their carers. Information will be made available as to which ambulatory services, respite care or special care units are best suited to meet the needs of this underserved group. RHAPSODY will deliver a model of a user-friendly, universally accessible and cost-effective type of healthcare intervention. The learning course will be made available to patient organisation organizations across Europe as a complement to existing services. Selected modules of the learning course will be used in the training of healthcare professionals. It is planned to evaluate the learning course in a subsequent multicentre, randomised and controlled trial with regard to efficacy and cost-effectiveness. Thus, RHAPSODY will contribute to increasing awareness and competence while reducing stigma with regard to YOD.
The work plan of RHAPSODY involves four consecutive and interacting steps. It starts by analysing and comparing the policy and information environment in six European countries that are relevant to people with YOD and their carers. In parallel, individual needs and access to treatment and care for this particular group will be assessed. The evidence gathered from this step will feed into the design of an internet-based online learning course. The prototype of this intervention will be tested in a pilot study at three partner sites. The major outcomes of the pilot study will be feasibility, acceptance and user satisfaction. These will be used to adjust the intervention. As the final step the results of the infrastructure analysis and the needs assessment will presented to the public and to the scientific audience. The prototype of the intervention will be made available to patient organizations across Europe, and selected modules will be prepared for the training of healthcare professionals as part of a comprehensive dissemination strategy.
Specific research questions
- How is health care organised, financed and delivered in participating countries? How do system differences affect the pathways to diagnosis, treatment and care for people with YOD and their family carers? What policies and guidance exists for health professionals, and what information is nationally provided for patients and carers? Are these the same in the six countries? Is any national health and social system particularly suited to meet the needs of this group?
- What are the individual needs of people with YOD and of their family carers and which access do they have to service provision and care in 6 European countries?
- Is an internet-based, multi-module, interactive, educational and skill-building intervention based on established principles of dementia carer support, and tailored to the identified needs and pathways to care, appropriate to help family carers cope with YOD and manage the associated behavioural, interpersonal, organisational and financial problems?
- Is the content of the intervention suitable for addressing a broader spectrum of users involved in the care of people with YOD, e. g. healthcare professionals, insurances, medical education boards, using various formats of delivery such as e-Books, offline courses, or presentation toolkits?
To answer the specific research questions RHAPSODY will proceed in 4 major steps and will be organised into 6 work packages.