LONDON – The first European guidelines developed to help the transition of young people from pediatric to adult rheumatology care within Europe were announced at the European Congress of Rheumatology.

The key aim of the guidelines, which have been jointly written by the European League Against Rheumatism (EULAR) and the Paediatric Rheumatology European Society (PReS), is to make the transition process more consistent across rheumatology practices throughout Europe, which in turn should help to ensure both the continuity and the quality of clinical care, explained Dr. Helen E. Fosterof Newcastle (England) University.

“There is evidence that there has been a long-standing problem of young people growing up with their condition moving to adult care and either falling between the services or being lost to follow-up, or there has not been continuity of care,” she said in an interview ahead of presenting the new EULAR/PReS guidelines at the congress.

“All in all, that’s translated into poorer health outcomes for young people,” said Dr. Foster, who was one of the main convenors of the EULAR/PReS Working Party for Transitional Care Management for Adolescents and Young People.

The premise is to try to provide practical recommendations that clinicians can use to help young people in their care from the age of 11 years and older as they get ready for the transfer to adult services. The latter process can occur anywhere from 16 to 19 years of age, Dr. Foster said, but it is important to try start the transition process early and get young people more involved and responsible for their own care.

“The idea is that young people are supported to be in control of their condition, that they can cope with being seen on their own in clinic, that they are getting on with their lives, and ultimately that they have a better outcome, which includes becoming healthy, getting a job, living independently, and having a family,” she said. The age at transfer is flexible and needs to fit with the young person’s home and school life. Ideally, it occurs at a time when their disease and medication are stable, they are attending routine appointments, and generally able to be independent and cope with their condition.

EULAR/PReS transition guidelines: 12 recommendations

• Access to high-quality coordinated transition care services should be available to all young people.

• Transition should ‘start early’ (11 years of age) or directly after diagnosis.

• Direct communication is needed between young people and their families and pediatric and adult care providers.

• Each young person should have an individualized transition plan.

• There should be a written transition policy within all relevant services; this should be regularly agreed and updated.

• The multidisciplinary team involved in transitional care should be clearly defined in a written document.

• Transition services should address the complexity of adolescent and young adult development.

• There must be an agreed upon and written transfer document.

• Health care teams should be given appropriate training in adolescent and young adult rheumatic diseases.

• Secure funding is needed for uninterrupted clinical care and transition into adult services.

• An open digital platform should host the recommendations and support tools and information.

• More evidence is needed to demonstrate the outcomes of the transition to adult services.

Developing the guidelines

Together with Dr. Kirsten Minden of the German Rheumatism Research Centre Berlin (DRFZ), Dr. Foster chaired the international, multidisciplinary EULAR/PReS Working Party to review existing national and international guidelines, consensus statements, and other supporting evidence on transitional care management in childhood-onset rheumatic illness.

The remit was to develop recommendations to facilitate optimal transitional care management in rheumatology across different European countries. As such, the recommendations cover both the ideal situation as well as the bare minimum requirements to hopefully allow widespread adoption. To this end, the working party performed a systematic literature review according to EULAR standard operating procedures. They developed a set of 12 recommendations based on the evidence they reviewed.

There are 47 different health systems within Europe, all running according to different health policies set by different governments, Dr. Minden observed. In fact, only a handful of countries have specific transition care policies or pathways, so the aim was to try to develop recommendations that would work across the board while giving some ideas on how to improve existing strategies further.

She noted that some examples of existing transition programs are “Growing up and moving on” in the United Kingdom (Pediatr Transplant. 2005;9:364-72), “On your own feet ahead” in the Netherlands (BMC Health Serv Res. 2014;14:47), and “Devices for Optimization of Transfer and Transition of Adolescents with Rheumatic Disorders (DON’T RETARD)” in Belgium (Rheumatology [Oxford]. 2016;55:133-42). Of these, two are specific to the transition of young people with juvenile idiopathic arthritis (JIA) and one is for rheumatologic conditions in general.

Core elements of these programs are the need to provide written information and have a transition care plan, the allocation of a dedicated transition coordinator, and an individualized transition plan for each patient, Dr. Minden said. These elements are also part of the EULAR/PReS transition guidelines.

One of the issues to be addressed, however, is whether these transition programs actually work in the long term. “Transitional care services in rheumatology are beginning to happen and their further development can surely be facilitated by the provision of tool kits and resources for health care providers and patients,” she noted. Some of the tools already exist, so the challenge now is to get these available to all so that there can be a wider dissemination of knowledge.

The North American perspective

Both the American Academy of Pediatrics and the Canadian Pediatric Society have issued general guidance on how to transition young people from pediatric to adult services, said Dr. Lori. B. Tucker, a pediatric specialist working at BC Children’s Hospital in Vancouver, which runs the ON TRAC (Transitioning Responsibly to Adult Care) program. This is a province-wide program aimed at supporting young people between the ages of 12 and 24 years with chronic health conditions and their families to transition from pediatric to adult health care services.

The ON TRAC program includes online and mobile-enabled checklists that can be used with young people and their families, although Dr. Tucker noted that the program had perhaps not been as successful as had been hoped. Another Canadian initiative specific to rheumatology practice is the RACER (Readiness for Adult Care in Rheumatology) questionnaire. This was developed to assess how ready young people with chronic ailments were to transition to adult service.

Dr. Tucker also highlighted the YARD (Young Adult Rheumatic Diseases) clinic at her institution, set up for those aged 18 years or older with a definite diagnosis of rheumatic disease. Parents are not allowed within the clinic so as to enable young adults to take responsibility for their overall care and collaborate with their health care providers. The clinic provides education, assistance with separation independence, and other issues pertinent to this young population of patients, and it also aims to encourage adherence to appointments and treatments.

“Collaboration between pediatric rheumatologists and adult colleagues is critical to improve the outcomes of young adults with rheumatic diseases,” Dr. Tucker said. She added, “Better articulated guidelines for transition care and use of new tools have great potential to improve the care of these patients ‘lost in-between.’ ”

Why the need for the EULAR/PReS recommendations?

Dr. Foster noted that, in many countries, there is a natural break between pediatric and adult care, with young people often moving from one center to another, perhaps in another part of the country. An important part of the transition process is therefore ensuring that there are appropriately trained staff members and good communication between centers to ensure that young people don’t get lost during the move.

“This is everyone’s business,” Dr. Foster said at the congress. “It is a shared responsibility to get it right.” That means adult and pediatric health care teams work together. Care needs to be “holistic,” she added, and cover medical, psychosocial, vocational issues, and be “developmentally appropriate throughout.” Young people also need to be involved from the start of the process, beginning early and continuing into young adulthood.

The recommendations aim to be flexible so that they can be widely implemented by health care teams throughout Europe. “It is not ‘one size fits all,” Dr. Foster acknowledged in the interview, noting the importance of being realistic and recognizing the differences between health systems, resources, and access across Europe.

Dr. Foster, who trained in adult rheumatology before turning to pediatric rheumatology, noted that there are existing resources that can be used and although funding will be an issue on some levels, there are things that can be done by using existing tools and resources.

“We don’t want to reinvent the wheel. We want to share best practice and resources,” she said. Indeed, one of the recommendations is that all the guidelines and all the resources used to develop them are made publicly available via an electronic platform so that anybody involved in the care of a young person with rheumatic disease, as well as the young person and their family, can access them.

“Transitional care is key to improving long-term outcomes for young people with rheumatic disease,” Dr. Foster concluded. The EULAR/PReS transition care management guidelines have been developed with the engagement of all relevant stakeholders, she said, so they should be widely applicable and “important levers for change” throughout Europe. “Implementation will require funding, but also our will and energy to make them actually work in practice.”

The EULAR/PReS transition guidelines are being finalized and will be published soon in Annals of the Rheumatic Diseases.

Dr. Foster, Dr. Minden, and Dr. Tucker had no disclosures relevant to the development of the recommendations.

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EULAR-PReS guidelines aim to aid pediatric to adult care transition