Background information
The Rare Transition project is a multi-year development project with the aim of simplifying the transition from pediatric to adult care for individuals with a rare disease, and supporting their journey towards becoming independent individuals. In 2015-2016, several workshops were conducted with young people, which resulted in the conclusion that a relevant support would be to receive coordinating support from a care navigator.
Challenge
Sirona was commissioned to evaluate the Transition Project's first clinical trial of a clinical care navigator, in terms of the service's impact on young people and their families and its socio-economic potential.
Implementation
The test was conducted with 12 young people belonging to two units: the Center for Rare Diagnoses Southeast and Karolinska Hospital. The effect of the service on the young people and their relatives was evaluated using separate forms for each target group. Data was collected at the start (baseline) and at the end of the pilot approximately 12 weeks later, in order to measure what changes had occurred. To get a picture of how the service was used, the pilots registered each individual contact during the project. More specifically, they recorded the reason for contact, how long each contact took and what help the pilot could provide. The place of the service in health care was discussed on the basis of a literature review and a limited cost-benefit analysis of the service's effects versus costs.
Outcome
The work helped to gain an initial understanding of how the service was used and its impact on young people and their families. Family members' concerns about young people's transition to care were significantly reduced. Almost all (93%) of contacts involved questions about county council-funded care. 37% of contacts led to an avoidable care contact, equivalent to 0.52 avoidable care contacts per young person per month. The savings financed by the county council per full-time pilot amounted to approximately SEK 58, which is higher than the average salary cost of a nurse-trained pilot of SEK 43, which justifies further studies.
