Consensus of the Spanish society of pediatric rheumatology for transition management from pediatric to adult care in rheumatic patients with childhood onset

Abstract

To develop recommendations on the transition from pediatric care to adult care in patients with chronic inflammatory rheumatic diseases with childhood onset based. Recommendations were generated following nominal group methodology and Delphi technique. A panel of 16 experts was established. A systematic literature review (on transitional care) and a narrative review were performed and presented to the panel in the first panel meeting to be discussed. A first draft of recommendations was generated and circulated. Focal groups with adolescents, young adults and parents were organized. In a second meeting, the focus group results along with the input from invited psychologist were used to establish definitive recommendations. Then, a Delphi process (two rounds) was carried out. A group of 72 pediatric and adult rheumatologists 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 center for evidence-based medicine levels of evidence. 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-centered to adult-oriented healthcare 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 skill requirements, models/programs, and strategies and guideline for implementation. Preliminary recommendations and agreement grade are shown in the Table (first Delphi round). These recommendations are intended to provide health professionals, patients, families and other stakeholders with a consensus on the transition process from pediatric to adult care.

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

“…The overarching principles seek to promote transferability to different contexts, be compliant with national regulatory guidance and facilitate local teams to work together with responsibility and accountability for services to be suitable for local needs. Our approach is similar to that proposed by others; the Spanish consensus for transition management in patients with jRMDs89 reported a framework with similar recommendations albeit with more practical details suited to the Spanish healthcare system.…”

EAACI Guidelines on the effective transition of adolescents and young adults with allergy and asthma

“…Eight guidelines focusing on the transition of AYA with juvenile‐onset rheumatic arthritis, 13,14 coeliac disease, 15 gastroenterological conditions, 16,17 liver diseases, 6 young people using healthcare or social care services 18 and AYA with special healthcare needs 19 were identified from the last 5 years (Table 1). Most of the evidence stemmed from expert opinion derived from clinical experience or qualitative studies reviewed systematically; very few randomized controlled trials were referenced.…”

Persistence and adverse events of biological treatment in adult patients with juvenile idiopathic arthritis: results from BIOBADASER

“…Nowadays, young people with rheumatic diseases have a greater rate of survival, although high morbidity persists that could be avoided, in part, with multidisciplinary management [ 21 ]. Recently, several professional groups and international agencies have attempted to create consensus recommendations and guidelines trying to improve this situation [ 22 , 23 ]. Data from the British Society for Rheumatology Biologics Register shows that tumor necrosis factor inhibitor (TNFi) therapies are an effective treatment option for adults with JIA, with a safety profile similar to that seen in rheumatoid arthritis (RA) [ 24 ].…”