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.”