EULAR/PReS Create Transitional Care Guidelines for Patients with Juvenile-Onset Rheumatic Diseases

VBCR - December 2016, Vol 5, No 6 - EULAR Guidelines
Anne Rowe

Young people with juvenile-onset rheumatic diseases are faced with numerous challenges as they enter adulthood. Recognizing the importance of having comprehensive services that address the medical, psychological, educational, and vocational needs of this population, the European League Against Rheumatism (EULAR) and the Pediatric Rheumatology European Society (PReS) have jointly developed the first European guidelines for the transition of younger patients from pediatric to adult rheumatic care.

The 12 recommendations, which are aimed at supporting young people with juvenile-onset rheumatic diseases who are in early adolescence (aged 10-13 years), mid adolescence (aged 14-16 years), late adolescence (aged 17-19 years), and young adulthood (aged 20-24 years), were developed by an international expert panel that included healthcare professionals from the fields of pediatric and adult rheumatology across Europe, as well as patients themselves. A systematic literature review of pre-existing guidelines, consensus statements, and other standards on transitional care approaches for patients with juvenile-onset rheumatic diseases was conducted to determine which recommendations could be integrated into the new guidelines.

Members of the EULAR/PReS task force then convened to discuss the results of the literature review, and to develop a process map and first draft of the guidelines. This draft was reviewed by the panel for modification and feedback. During a second meeting, necessary revisions were made to proposed standards and recommendations, which were then e-mailed to 195 pediatric and adult rheumatology clinicians, including physicians and other healthcare professionals, to ascertain the level to which they agreed with each statement. The information gleaned from the responses to the e-mailed surveys was then incorporated into the final guidelines.

Objectives of the EULAR/PReS Panel

The panel cited several objectives for the development of the new guidelines, including the advancement of care that is appropriate for younger patients; an improvement in medical, social, job-related, and psychological patient outcomes; the promotion of using evidence-based strategies in transitional care; and an increase in networking among healthcare professionals who are involved in the care of young patients with rheumatic diseases.

“The purpose of these recommendations and standards is to increase the profile of transition, optimize delivery of transitional care and improve patient experience within rheumatology across European countries,” explained Helen E. Foster, MD, Professor of Paediatric Rheumatology, Institute of Cellular Medicine, Newcastle University, United Kingdom, and colleagues in their report.

The EULAR/PReS task force asserted that the guidelines can be used by a wide range of healthcare professionals, including, but not limited to, adult and pediatric rheumatologists, nurses, occupational therapists, social workers, psychologists, youth workers, general practitioners, and professional societies who work with young people with rheumatic diseases, as well as the patients and their families. To increase the likelihood of widespread adoption of the recommendations, the panel designed them to be flexible.

“We acknowledge that their implementation into clinical practice will be challenging and likely to be facilitated by stratification into ‘essential’ and ‘ideal’ components—essential defined as the minimum standards below which care would be deemed unacceptable and ideal being the standard that is regarded as excellent ‘optimal’ care,” Dr Foster and colleagues stated.

Key Points of the Transitional Care Guidelines

Recommendations from the EULAR/PReS guidelines for the transitional care of young patients with juvenile-onset rheumatic diseases include:

  • Access to high-quality, coordinated transitional care services should be available to all young people and their families
  • Transitions should occur as early as possible—either directly after diagnosis or when the patient is aged 10 to 13 years
  • Direct communication is necessary between young people, their families, and the pediatric and adult healthcare providers before, during, and after the transition process
  • Each young person should have an individualized transition plan that is documented in their health records; patients and their families should be involved in the development of this plan
  • There should be a written transition policy within all relevant services that is mutually agreed upon and updated regularly
  • The multidisciplinary team that will be involved in the patient’s transitional care should be clearly defined in a written document, and include a designated coordinator
  • Transitional care services should address the complexity of development in adolescents and young adults
  • A transfer document must exist
  • Healthcare teams should be appropriately trained in the generic care of adolescents, as well as in juvenile-onset rheumatic diseases
  • Secure funding must be in place to support uninterrupted clinical care and the availability of transition services
  • Recommendations, support tools, and information on transitional care should be hosted on a digital platform that is free to use and easily accessible
  • More evidence-based research is required to improve the outcomes of young patients with juvenile-onset rheumatic diseases.

Need for Sufficient Funding and Reimbursement

Members of the task force emphasized the importance of having adequate funding to support the implementation of the EULAR/PReS transitional care guidelines into healthcare services for young people with juvenile-onset rheumatic diseases.

“Funding is needed for specific service provision and to ensure continuity of clinical care and access to medicines after transfer to adult care based on clinical need rather than age of the patient of the provider,” they said.

The EULAR/PReS researchers also stressed their ardent support for the inclusion of transitional care in all EULAR and PReS activities to increase awareness, promote education, and expand the skill set of multidisciplinary teams that are involved in the management of young patients transitioning to adult rheumatology care.

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Last modified: February 1, 2017
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