Mia Alessandra Nieto is an 8-year old living with Juvenile Idiopathic Arthritis (JIA) in Austin, Texas. When she was diagnosed at 10 months, she was the youngest child ever diagnosed with JIA in the state of Texas. However, it took 37 days to confirm her condition because there is an immense lack on knowledge in the field of pediatric rheumatology among general practitioners despite the fact that JIA is the most prevalent chronic condition in children in the United States with over 300,000 diagnosed. This is an overview of Mia’s story, along with information regarding the lack of knowledge on the condition not only in the general population but mainly and more importantly among the medical professionals in the United States. / text

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Background/Purpose: Healthcare transition is the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” The American College of Physicians has partnered with national organizations, including the ACR, to develop guidelines and tools to promote a smooth transition to adult care. We aim to assess current transition practices and beliefs among North American pediatric rheumatology providers and to identify differences from a 2010 provider survey published by Chira et al. Methods: In April 2018, Childhood Arthritis and Rheumatology Research Alliance (CARRA) members received a 25-item online survey about healthcare transition. Got Transition’s Current Assessment of Health Care Transition Activities for Transitioning Youth to Adult Health Care Providers was used to measure clinical transition processes on a scale of 1 (basic) to 4 (comprehensive). Bivariate data analysis was used to compare 2010 and 2018 survey findings. Results: Over half of CARRA members completed the 2018 survey. Participants included pediatric rheumatologists (74%), adult- and pediatric-trained rheumatologists (4%), pediatric rheumatology fellows (18%), and other (4%), including emeritus faculty and mid-level providers. Most belonged to university-affiliated practices (87%) in the U.S. (91%). Providers aim to transfer patients at age 18 (23%) or 21 (33%), but the actual age of transfer is often 21 or older (56%). The most common target age to begin transition planning was 15-17 (49%). Few providers use the ACR transition tools (31%) or have a dedicated transition clinic (23%). Only 17% have a transition policy in place; 63% do not consistently address healthcare transition. Transition outcomes of interest included an adult rheumatology visit within 6 months of the last pediatric visit (80%), adherence to medications and plan of care (78%), continuous insurance coverage (78%), and patient-reported gaps in access to care (76%). When compared to the 2010 survey, improvement was noted in 3 of 12 transition barriers: availability of adult primary care providers, availability of adult rheumatologists, and transition knowledge and skills of pediatric staff (p<0.001). However, more providers cited the close bond among adolescents, parents and pediatric providers as a barrier (Figure 1). Conclusion: This survey of pediatric rheumatology providersdemonstrates some improvement in transition barriers since 2010, though most practices still maintain minimal support for patients and providers around healthcare transition. Further research is needed to understand how to effectively facilitate transition to adult care for young adults with childhood-onset rheumatic diseases.

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Aging adolescents with rheumatic disease adopt responsibility for disease management from parents. Education on transition care is usually provided to patients by healthcare providers or parents. However, parent-focused transition resources are sparse with limited understanding of parental role and involvement during transition. After providing both parent and adolescent with the Transition Toolkit (parent-centered transition pamphlet, 5 domains of transition readiness roadmap, tip sheets) to support transition to adult care, we aimed to i) determine the change in patient’s transition readiness, using the Transition-Q, ii) explore the influence of parent-adolescent relationships on transition readiness, using the Parent-Adolescent Communication Scale (PACS), and iii) obtain feedback on the Toolkit’s effectiveness, using a questionnaire. A prospective cohort study of patients 14-18 years was conducted at McMaster Children’s Hospital rheumatology transition clinic (includes pediatric rheumatologists, allied health, and the adult rheumatologist patients see post-transfer). Participant demographics, disease characteristics, transition readiness scores (Transition-Q, max 100), and parent-adolescent communication scores (PACS, max 100) were collected. After obtaining 2 Transition-Q scores from routine clinical care prior to enrollment, the Toolkit was shared with participants, and 2 follow-up Transition-Q scores were collected. Generalized estimating equation analyses were performed to determine the Toolkit’s impact on transition readiness and explore the parent-adolescent relationship and communication quality. Subgroup analyses were conducted by sex. A questionnaire was used to obtain Toolkit feedback. Of 21 patients, 19 completed one post-intervention Transition-Q and 16 completed two. Transition-Q scores increased over time and the rate of increase doubled after the Toolkit was shared with adolescents and parents (β=7.8, P<0.0 and β=15.5, P<0.0, respectively). Transition readiness did not seem to be influenced by the quality of communication between parent and child. Feedback from questionnaire responses found the Toolkit to be a helpful resource but standardization of transition programs and further investigation into parent-adolescent relationships, gender differences, and intervention sustainability is needed. / Thesis / Master of Science Rehabilitation Science (MSc) / Aging youths with rheumatic disease adopt the responsibility of disease management from parents. However, few resources to educate parents on transition and transition support exist. After giving patients and parents a Transition Toolkit, we aimed to i) determine change in patient’s transition readiness, ii) explore the influence of parent-adolescent relationships on transition readiness, and iii) obtain feedback on Toolkit use. Twenty-one study participants were recruited. Participant demographics, transition readiness scores, and parent-adolescent communication scores were collected. Transition-Q scores were collected before and after Toolkit provision. Analyses were performed to determine Toolkit impact and influence of parent-adolescent communication on transition readiness. Toolkit feedback from parents and adolescents were obtained through a questionnaire. Transition-Q scores increased at each follow-up, with the greatest increase after the Toolkit was shared. Parent-adolescent relationships did not influence transition readiness. Toolkit feedback suggests digital reminders to improve long-term retention of transition education. Future studies with greater patient diversity are recommended.