Journal of transition medicine 

Abstract: Abstract Background Up to 57% of adolescents and young adults (AYA) with chronic physical health conditions experience mental health conditions, the presence of which contributes to increased morbidity and poor quality of life. AYA with co-occurring physical and mental health conditions, therefore, may experience additional challenges as they transition from pediatric to adult services. While transition readiness – the acquisition of self-management and advocacy skills – contributes to successful transitions to adult care, this concept has not been adequately explored for AYA with co-occurring physical and mental health conditions. Research is needed to identify whether the presence of a mental health comorbidity is associated with transition readiness, and what the experiences of AYA with co-occurring conditions are as they exit pediatric services. This paper outlines the protocol for the Readiness and Experiences of ADolescents and Young Adults with Co-occurring Physical and Mental Health Conditions Exiting Pediatric Services (READY2Exit) study; the first study to address this gap using a patient-oriented, mixed methods design. Methods A sequential explanatory mixed methods design will be used to understand the transition readiness of 16–21 year olds with physical and mental health conditions using quantitative and qualitative data. First, Transition Readiness Assessment Questionnaire (TRAQ) scores will be compared among AYA with chronic health conditions, with and without mental health comorbidity. Interviews will then be conducted with approximately 15 AYA with co-occurring health and mental health conditions and analyzed using qualitative description. The READY2Exit study will be conducted in collaboration with five Young Adult Research Partners (YARP) aged 18–30 with lived experience in the health/mental health systems across Canada. The YARP will partner in key tasks such as interview guide co-design, data interpretation, and knowledge translation tool development. Discussion AYA with co-occurring physical and mental health conditions may have unique needs as they prepare for health care transitions. The results of this study will inform the refinement of transition readiness practices to improve care for this group. The active involvement of the YARP across study phases will bring the critical perspectives of young adults to READY2Exit, ensuring the methods, research approaches and outputs align with their needs.

Abstract: Abstract Transition from pediatric to adult care for adolescents and young adults (AYAs) with chronic illness affects the entire family. However, little research has compared AYA and parent experiences of transition. Using Sandelowski and Barroso’s method, the aim of this metasynthesis was to summarize findings of qualitative studies focusing on the transition experiences of AYAs and their parents across different chronic physical illnesses. PubMed, EMBASE and CINAHL were searched followed by forward and backward citation searching. Two authors completed a two-step screening process. Quality was appraised using Guba’s criteria for qualitative rigor. Study characteristics and second order constructs were extracted by two authors and an iterative codebook guided coding and data synthesis. Of 1,644 records identified, 63 studies met inclusion criteria and reflect data from 1,106 AYAs and 397 parents across 18 diagnoses. Three themes were synthesized: transition is dynamic and experienced differently (differing perceptions of role change and growth during emerging adulthood), need for a supported and gradual transition (transition preparation and the factors which influence it) and liminal space (feeling stuck between pediatric and adult care). While AYAs and parents experience some aspects of transition differently, themes were similar across chronic illnesses which supports the development of disease agnostic transition preparation interventions. Transition preparation should support shifting family roles and responsibilities and offer interventions which align with AYA and family preferences.

Abstract: Abstract Objectives Auto-inflammatory Diseases (AIDs) are a group of diseases with a strong genetic component, inducing an inappropriate activation of innate immunity. The patients with pediatric onset will face the transitional care (TC) from a pediatrician to an adult care setting, during the critical phase of the adolescence. That implies a risk of failure and drop out, due to the different approach of pediatrician compared to the adult doctor. To describe the model of TC for AIDs from a paediatric to adult centre of two hospitals in Rome, and to pointing out the different steps emerged from specific experiences. Methods In November 2020, a Board of paediatricians and internists discussed their experience to identify “hot topics” for a successful management of TC. Results The Board agreed on the optimal time for the transition (12–18 years). Specific elements to be considered are the reached level of emotional and intellectual maturity, and the clinical stability of the disease. Conclusions The TC of patients with chronic AIDs, requires a strong cooperation to define the adequate follow-up, and to guarantee the compliance to the treatment. This model allows us to investigate AIDs complex cases, requiring a long period of observations.