Background/Purpose: many young people with childhood-onset diseases, including rheumatic diseases, continue to require medical care into adult life. There are many differences between pediatric and adult health 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. The aim of this study was 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 transitional care) and a narrative review (websites, clinical guidelines and other relevant documentation) were performed and presented to the panel in the 1^st 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 2^nd panel meeting the focus group results along with the input from invited psychologist was used to established definitive recommendations. Then, a Delphi process (2 rounds) was carried out. A large group of 70 pediatricians and 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 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. Preliminary recommendations and agreement grade are shown in the table (1^st Delphi round).  

Conclusion: 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.

 

#	RECOMMENDATIONS	% ≥7
1	Transition in pediatric rheumatology should be considered as a continuous, natural and flexible process	92%
2	To standardize, plan ahead, and to define specific protocols related to transitional care	94%
3	To promote outpatient care during transition	47%
4	To endorse specialized nursing care during transition	88%
5	During transitional care, health professionals should convey to patients and parents normality, optimism, sincerity, and should listen to and dialog with them efficiently	97%
6	To  support and reinforce patients autonomy and participation adapted to the age/maturity of them during transition	99%
7	To facilitate (evidence based) useful written information (electronic, paper) about disease most relevant issues, management and other aspects for patients and parents	91%
8	To actively involve patients and parents in all of the processes of the transitional care	94%
9	To inform patients and parents about the disease and transitional processes including adult care	99%
10	To monitor adherence (to treatments, visits, etc)	90%
11	To endurance effective communication, collaboration and coordination, among all health professionals involved in the transitional care	78%
12	To endurance effective communication, collaboration and coordination, between health professionals involved in the transitional care and patients educators	64%
13	To develop clinical sessions between pediatric rheumatologists and adult rheumatologists and with other specialists involved in transitional care	90%
14	Adaptations to patients academic needs should be considered	34%
15	An specific training on transitional care as a part of the pediatric training	58%
16	To promote multidisciplinary care by implementing a transitional care model based on each center characteristics, resources and needs	97%
17	The implementation of a transition care model should be planned carefully as well as the strategies to assure the implementation	94%
18	When transferring a patient to the adult care, a full report on the disease course, impact, treatments, and other relevant aspects should be delivered	100%
19	To  set up reference units of transitional care	37%

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/consensus-statement-on-the-transition-process-from-pediatric-care-to-adult-care-in-patients-with-chronic-inflammatory-rheumatic-diseases-with-childhood-onset/