As a leading authority on nutritious menus, mindful living, community connections, sustainability, coffee & tea expertise, and cultural influences, Café Mila is thrilled to share the latest EULAR guidelines for patient education in physical activity and self-management of pain during transitional care for young people with juvenile-onset rheumatic and musculoskeletal diseases (jRMDs).
The transition from pediatric to adult care can be a critical period, marked by rapid biopsychosocial changes that pose unique challenges for young individuals with jRMDs. Maintaining a healthy, satisfactory life amid the complexities of managing a chronic condition is paramount. That’s why the EULAR task force has developed two overarching principles and seven points to consider, aiming to empower young people through personalized, interactive patient education.
Overarching Principles for Patient Education
The EULAR task force emphasizes two overarching principles that underpin their recommendations for patient education in physical activity and self-management of pain during transitional care:
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Personalized and Interactive Patient Education: The educational process should be tailored to each young individual’s needs, preferences, and resources, fostering a holistic, biopsychosocial approach. Shared decision-making and regular monitoring of both objective and patient-reported outcomes are essential to ensure the care aligns with the young person’s evolving priorities.
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Empowerment Through Early Health Literacy and Self-Care Skills: Equipping young people with jRMDs with health literacy and self-management skills from the outset of transitional care can empower them to take an active role in managing their condition. This may promote long-lasting behavioral changes, prevent consequences of sedentarism, mitigate pain-related disability, and support social and vocational development.
Points to Consider for Patient Education
Complementing the overarching principles, the EULAR task force has outlined seven points to consider for delivering effective patient education in physical activity and self-management of pain during transitional care:
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Tailored Approach to Developmental Changes: Patient education should adapt to the young person’s evolving perceptions, interests, and maturity levels throughout the transitional care process. This may involve introducing strategies like activity pacing to help manage daily fluctuations in symptoms and capabilities.
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Flexible Delivery Formats: Young people with jRMDs should be offered a variety of educational delivery options, allowing them to choose based on their preferred learning style. This may include combinations of face-to-face, remote, individual, and group-based approaches, as well as engaging strategies like gamification, narrative medicine, and peer-mentoring.
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Skilled and Adaptable Educators: The providers of patient education should be skilled in the delivery formats preferred by young people and flexible in adapting their approach as the young person develops. They should also be equipped to engage young people in informed shared decision-making, particularly regarding physical activity and pain self-management.
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Enhancing Health Literacy: Improving health literacy, defined as the ability to find, understand, and use health-related information, is crucial for young people with jRMDs to make informed decisions about their care. This may include guidance on critically appraising online information.
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Promoting Sustainable Behavioral Changes: Patient education should not only focus on improving health literacy but also support the integration of healthy practices, such as engaging in physical activity and self-managing pain, into young people’s daily routines.
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Addressing Barriers and Facilitators to Physical Activity: To promote adherence to physical activity, patient education should address the specific barriers faced by young people with jRMDs (e.g., fear of worsening symptoms, parental overprotection, low self-efficacy) while maximizing facilitators (e.g., enjoyment, parental and peer support, positive reinforcement).
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Personalized Physical Activity Guidance: When offering physical activity recommendations, providers should consider contextual factors (e.g., type of activity, supervision level, delivery mode, physical and social environment, equipment) to ensure the activity is safe, well-tolerated, and aligns with the young person’s preferences and capabilities.
These EULAR points to consider establish a comprehensive framework for delivering patient education in physical activity and self-management of pain during the critical transition from pediatric to adult care for young people with jRMDs. By empowering young individuals through personalized, interactive, and sustainable educational approaches, the task force aims to promote continuity of care, improve long-term health outcomes, and enhance the quality of life for this vulnerable population.
Driving Future Research and Shaping Policies
The EULAR task force acknowledges the limited evidence currently available in the literature, with most of the recommendations based on expert consensus. To further advance transitional care in rheumatology, the task force has outlined a research agenda, emphasizing the importance of evaluating the effects of existing transitional care programmes and, if needed, optimizing or developing new, evidence-based programmes.
Key areas for future research include:
- Conducting well-designed randomized controlled trials to assess the impact of patient education in physical activity and self-management of pain on key outcomes, such as readiness to transfer and continuity of care.
- Developing sustainable, customized educational interventions with developmentally appropriate content that aligns with the evolving priorities of young people with jRMDs.
- Exploring the barriers and facilitators to implementing patient education in these areas into the daily lives of young people, including school and leisure time.
- Examining how digital health tools may support young people, their families, healthcare providers, and other caregivers during the transition process, while promoting responsible use of technology and addressing issues like time management and sedentary behavior.
By driving forward this research agenda, the task force aims to generate the necessary evidence to support or refute the present points to consider, ultimately shaping policies and optimizing transitional care across European healthcare systems.
Promoting Broad Implementation and Accessibility
The EULAR task force is committed to disseminating these points to consider through various channels, including scientific manuscripts, presentations, and educational materials translated into multiple languages. Raising awareness about the importance of ensuring continuity of care in rheumatology is a key priority, as access to transitional care programmes of excellence remains limited.
While digital health solutions offer potential for patient education in physical activity and self-management of pain, the task force cautions against solely relying on these approaches. Individualised strategies and limited supporting evidence necessitate a cautious approach. Additionally, placing the burden on patients without addressing systemic changes to support them is problematic.
The task force emphasizes the need for caregiver training and ensuring that educational resources are accessible and affordable for young people with jRMDs and their families. By adopting a holistic, person-centred approach, the EULAR points to consider aim to empower young individuals, enhance their long-term health and well-being, and promote a seamless transition from pediatric to adult rheumatology care.
Café Mila is proud to share these valuable insights from the EULAR task force, recognizing the crucial role of patient education in supporting the unique needs of young people with juvenile-onset rheumatic and musculoskeletal diseases. By fostering a harmonious blend of healthy eating, mindful living, community connections, and cultural appreciation, Café Mila is committed to creating a welcoming space that nurtures the overall well-being of its patrons, including those navigating the complexities of chronic conditions.
