EULAR: Considerations when Transitioning from Pediatric to Adult Rheumatologic Care Save
EULAR has established guidance on best practices for delivering patient education in physical activity and self-management of pain during transitional care in rheumatology.
For 1 in 2 young people with jRMDs, the disease continues into adulthood, often experiencing challenges in managing it throughout their lives. Many adolescents struggle to take responsibility for their disease, especially while balancing school, social life and figuring out who they are and their place in the world. This may make the transition from pediatric to adult care particularly difficult. During this transition, up to 50% of young people with jRMDs discontinue their treatment, leading to worse disease outcomes. EULAR has previously established full recommendations around transitional care,1 but a gap has been identified around this particular topic.
A task force of 26 people from 10 European countries was established to review the literature and best practices to develop expert consensus and establish overarching principles (OAPs) and Points to Consider (PtC) based on a literature review and expertise.
These highlight the need for personalized transitional care in rheumatology, shared decision-making and incorporating education to empower young individuals in managing their disorders. The central focus is on enhancing knowledge and health literacy, empowering young people to critically evaluate information and engage in informed shared decision-making. By fostering healthy habits and encouraging enjoyable physical activity, the guidelines aim to promote long-lasting behavioral changes.
While its is clear that there are long-lasting benefits of patient education in physical activity and self-management of pain during transitional care, there is a lack of consensus on how best to deliver such education during transitional care.
Overarching Principles
- Transitional care has clear personalized aims, ideally based on shared decision-making and periodically monitored by both objective and patient-reported outcomes
- Patient education is a planned interactive learning process designed to support and enable young people with jRMDs to manage their health and chronic condition and optimize their well-being during transitional care
Points to Consider
- Patient education in physical activity and self-management of pain should be prioritized for newly diagnosed patients and for those in transitional care
- Patient education in physical activity and self-management of pain should be tailored and needs-based according to the young people’s priorities, preferences, capabilities and resources
- Patient education during transitional care should consist of a variety of learning formats, including digital health
- Patient education during transitional care should include the evaluation of both young people’s health literacy and, most importantly, their behavioral changes
- All patients and their caregivers should be offered education on the importance of maintaining a healthy lifestyle to better self-manage jRMDs
- Physical activity has health benefits for young people with jRMDs and should be promoted during transitional care
- Rheumatologists and health professionals in rheumatology should consider offering a variety of physical activity formats that align with young people’s preferences and disease requirements
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