Background Many young people with rheumatic childhood-onset diseases continue to require medical care into adult life. There are many differences between pediatric and adult care. Although there is an extensive evidence base for the need of transitional care, there is a paucity of robust outcome data and a great variability on the models of transitional care.
Objectives To develop recommendations on the transition from pediatric care to adult care in patients with chronic inflammatory rheumatic diseases with childhood-onset based on the best evidence and experience.
Methods Recommendations were generated following nominal group methodology and Delphi technique. A panel of experts was established (8 pediatricians, 8 rheumatologists). A systematic literature review (on) and a narrative review (websites, clinical guidelines and other relevant documentation) were performed and presented to the panel in the 1st panel meeting to be discussed and to help define recommendations. A first draft of recommendations was generated and circulated for comments and wording refinements. Focal groups with adolescents, young adults and parents were separately. In a 2nd panel meeting the focus group results along with the input from invited nurses and psychologists were used to established definitive recommendations. A Delphi process (2 rounds) was carried out. A large group of pediatricians and rheumatologits took part. Recommendations were voted from 1 (total disagreement) to 10 (total agreement). We defined agreement if at least 70% voted ≥7. The level of evidence and grade or recommendation was assessed using the Oxford Centre for Evidence-based Medicine Levels of Evidence.
Results Transition care was defined as a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic inflammatory rheumatic diseases with childhood-onset as they move from child-centred to adult-oriented health care systems. The consensus covers: transition needs, barriers and facilitators, transitional issues (objectives, participants, content, phases, timing, plans, documentation, and responsibilities), physicians and other health professionals knowledge and skills requirements, models/programs, strategies and guideline for implementation.
Conclusions These recommendations are intended to provide pediatricians, rheumatologists, patients, families and other stakeholders with a consensus on the transition process from pediatric care to adult care in patients with chronic inflammatory rheumatic diseases with childhood-onset.
Disclosure of Interest None declared