EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases.

To develop standards and recommendations for transitional care for young people (YP) with juvenile-onset rheumatic and musculoskeletal diseases (jRMD). The consensus process involved the following: (1) establishing an international expert panel to include patients and representatives from multidisciplinary teams in adult and paediatric rheumatology; (2) a systematic review of published models of transitional care in jRMDs, potential standards and recommendations, strategies for implementation and tools to evaluate services and outcomes; (3) setting the framework, developing the process map and generating a first draft of standards and recommendations; (4) further iteration of recommendations; (5) establishing consensus recommendations with Delphi methodology and (6) establishing standards and quality indicators. The final consensus derived 12 specific recommendations for YP with jRMD focused on transitional care. These included: high-quality, multidisciplinary care starting in early adolescence; the integral role of a transition co-ordinator; transition policies and protocols; efficient communications; transfer documentation; an open electronic-based platform to access resources; appropriate training for paediatric and adult healthcare teams; secure funding to continue treatments and services into adult rheumatology and the need for increased evidence to inform best practice. These consensus-based recommendations inform strategies to reach optimal outcomes in transitional care for YP with jRMD based on available evidence and expert opinion. They need to be implemented in the context of individual countries, healthcare systems and regulatory frameworks.

A Mixed Method Study: Defining the Core Learning Needs of Nurses Delivering Care to Children and Young People with Rheumatic Disease to Inform Paediatric Musculoskeletal Matters, a Free Online Educational Resource.

Children and young people with rheumatic diseases and their families are often supported by nurses who may not have had specialist training in paediatric rheumatology. The purpose of our study was to establish the core learning needs of all nurses who may encounter these children and young people in their clinical practice and use this information to inform the content and format of Paediatric Musculoskeletal Matters Nursing (PMM-Nursing) Engagement with nurses working in different roles and with various levels of experience in musculoskeletal medicine informed these learning needs and PMM-Nursing content. Mixed methods ascertained learning needs under the following themes: (1) Need for increased awareness about rheumatic disease; (2) Impact of experience and nursing role; (3) Need for increased knowledge about rheumatic disease and management. In addition, our methods informed design components for an impactful learning and information resource. Representatives from stakeholder nursing groups, social sciences, and web development used this information to create a suitable framework for PMM-Nursing. The content of PMM-Nursing is now live and freely available.

Paediatric musculoskeletal matters (pmm)--collaborative development of an online evidence based interactive learning tool and information resource for education in paediatric musculoskeletal medicine.

BACKGROUND: We describe the collaborative development of an evidence based, free online resource namely 'paediatric musculoskeletal matters' (pmm). This resource was developed with the aim of reaching a wide range of health professionals to increase awareness, knowledge and skills within paediatric musculoskeletal medicine, thereby facilitating early diagnosis and referral to specialist care. METHODS: Engagement with stakeholder groups (primary care, paediatrics, musculoskeletal specialties and medical students) informed the essential 'core' learning outcomes to derive content of pmm. Representatives from stakeholder groups, social science and web development experts transformed the learning outcomes into a suitable framework. Target audience representatives reviewed the framework and their opinion was gathered using an online survey (n = 74) and focus groups (n = 2). Experts in paediatric musculoskeletal medicine peer reviewed the content and design. RESULTS: User preferences informed design with mobile, tablet and web compatible versions to facilitate access, various media and formats to engage users and the content presented in module format (i.e. Clinical assessment, Investigations and management, Limping child, Joint pain by site, Swollen joint(s) and Resources). CONCLUSIONS: We propose that our collaborative and evidence-based approach has ensured that pmm is user-friendly, with readily accessible, suitable content, and will help to improve access to paediatric musculoskeletal medicine education. The content is evidence-based with the design and functionality of pmm to facilitate optimal and 'real life' access to information. pmm is targeted at medical students and the primary care environment although messages are transferable to all health care professionals involved in the care of children and young people.