Identifying best practices in care trajectories of community-dwelling persons with dementia. A comparison of care trajectories, quality indicators and costs extracted from routine care registrations and health insurance data

BACKGROUND: Persons with dementia and their family carers move through a demanding care trajectory, from first symptoms of dementia until admission in a long term care facility or death. During this trajectory, various problems and transitions appear which can cause intense stress for both patients and caregivers. In the last 15 years, dementia care networks were developed throughout the Netherlands providing integrated dementia care in the community, mostly coordinated by case managers. There are substantial regional differences in the provision and coverage of dementia care networks. It is unclear if and to what extent these differences relate to variations in quality and costs of care. Little information is available on what characterizes high-quality dementia care throughout the disease trajectory; nor what is the most cost-effective manner to offer dementia care. Insight and learning from ‘best practices’ may further facilitate the provision of high-quality of care for persons with dementia and their family carers against reasonable costs. AIM: To identify and characterize best practices in care trajectories of community-dwelling persons with dementia and their family carers from the first symptoms of dementia until admission in a long term care facility or death, by linking, extracting and processing relevant data from routine care registrations of GPs, local dementia care networks and health care insurers. To reach this aim, the following objectives will be addressed: 1. Describe the (variation in) care trajectories of persons with dementia from first symptoms to admission in a long term care facility or death, in terms of quality indicators (QIs) from the Dutch National Dementia Care Standard and health care costs per region. 2. Define best (and worst), practices in care trajectories based on the QI scores, costs and cost-QI ratio of the dementia care networks. 3. Develop feedback report formats to provide local dementia care networks and other stakeholders (health care insurers, GPs, policy makers) with information about the quality and costs of care for persons with dementia in specific regions. 4. Produce a roadmap with tips & tricks for linking and extracting routinely collected data of GPs, local dementia care networks and health care insurers for future usage by the workgroup preparing the National Dementia Register in the context of the Deltaplan for Dementia). The specific research questions derived from the objectives include: a. With what precision and completeness can QIs for dementia care, as described in the Dutch Dementia Care Standard, and health care costs be extracted and calculated from routinely collected care registries? b. Which care trajectories do persons with dementia and their family carers, move through in the period from first symptoms to admission or death? And which QIs and costs are related to these trajectories? c. To what extent are patient-, organizational- and regional characteristics related to the provided care, QI scores and costs? d. How can ‘best practices’ based on QI scores and costs be characterized and interpreted? METHOD: Both quantitative as well as qualitative methods are used to address the research questions. Care trajectories of persons with a dementia diagnosis are described by connecting and evaluating routinely collected quantitative data from GPs, local dementia care networks and health insurers. Quality Indicators (QIs) and costs of care are compared across ten dementia care networks. Best practices are defined by ranking the local dementia care networks from poor to superior, based on their QI scores per domain, the QI summary score expressing the overall level of quality of care, and the Cost-QI ratio. Best practices are characterized by describing the organizational and regional features of the local dementia care networks. Qualitative methods involve a Delphi procedure with an expert panel to specify the QIs from the Dementia Care Standard at the start of the project. At the end of the project, focus group discussions with stakeholders are organized to validate and interpret best practices, develop feedback report formats for benchmarking and to promote the adoption of the methodology to identify best practices. EXPECTED RESULTS: This study produces relevant insight in best practices in care trajectories of persons with dementia and their primary family carer. Specific end products include: 1. A guideline on how to extract and calculate a set of specified QIs from the National Dementia Care Standard from routinely collected data registries 2. Feedback report formats that help dementia care organizations and health care professionals to set priorities for quality of care improvement 3. A roadmap with information about linking and extracting routinely collected care data for future usage by the National Dementia Register workgroup.