Volume 4, Issue 1

Objectives Transition of care can be a complex process that involves multiple providers working together across the pediatric and adult health care system to support youth. The shift from a primarily family-centred approach to a patient-centred approach that emphasizes more personal responsibility for health care management can be challenging for youth, caregivers and providers to navigate. Despite the importance of transition, there is a lack of evidence about the best practices and types of interventions that support the transition of care process from the perspective of both pediatric and adult health care providers. An exploration of barriers and facilitators is a critical first step to identifying important behavioural determinants for designing and implementing evidence-based interventions. As such, the purpose of this study was to identify the barriers and facilitators to the transition of care from the perspective of pediatric and adult health care providers. Methods A qualitative descriptive design was used to conduct semi-structured interviews guided by the COM-B Model of Behaviour – a theoretical model that suggests that for any behaviour to occur there must be a change in one or more of the following domains: capability, opportunity and/or motivation. The study took place in the province of Nova Scotia, Canada and focused on three common conditions: Inflammatory Bowel Disease, Diabetes, and Juvenile Idiopathic Arthritis. Participants were recruited through stratified purposeful and convenience sampling and all interviews were conducted virtually on Zoom. Interviews were audio-recorded, transcribed verbatim and imported into NVivo Qualitative Data Software for analysis. Data were first analyzed using directed content analysis, guided by the COM-B model, then further examined using inductive thematic analysis to identify barriers and facilitators within the three domains. Results In total, 26 health care providers participated in this study (pediatric, n=13, adult n=13) including a mix of adult and pediatric physicians, nurses, and allied health care professionals. The participants identified primarily as female (n=19.73%) and had a range of years of experience (3–39, mean = 14.84). We identified a range of interconnected barriers and facilitators across each of the COM-B Model of Behaviour domains such as, degree of formalized training (capability), facilitation and coordination responsibilities (opportunity), collaboration across providers (opportunities), securing attachment to adult care system (motivation) and time (opportunity). Findings were categorized by three overarching themes: (1) Knowledge and Skills to Support Transition of Care; (2) Navigation Role for Youth and Caregivers; and (3) System Coordination. Conclusions By using the COM-B Model of Behaviour, we identified key barriers and facilitators that intersect to influence the transition of care process. These findings will be used to inform and adapt initiatives and interventions in Nova Scotia to improve the transition experience, as well as may be transferrable to other jurisdictions.

Objectives Measuring transition readiness is important when preparing young people with chronic illness for successful transition to adult care. The Expanded Socioecological Model of Adolescent and Young Adult Readiness to Transition (Expanded SMART) offers a holistic view of factors that influence transition readiness and outcomes. The aim of this study was to examine conceptual congruency of transition readiness instruments with the Expanded SMART to determine the breadth and frequency of constructs measured. Methods PubMed was searched to identify observational and experimental studies that measured transition readiness across chronic illnesses. Selected instruments were first evaluated on their development and psychometric properties. Next, reviewers independently mapped each instrument item to Expanded SMART constructs: knowledge, skills/self-efficacy, relationships/communication, psychosocial/emotions, developmental maturity, beliefs/expectations, goals/motivation. If items did not map to a construct, a new construct was named inductively through group discussion. Results Three instruments (TRAQ [20 items], STARx [18 items] and TRxANSITION Index [32 items]), reported in 74 studies, were identified. Across instruments, most items mapped to three constructs: skills/self-efficacy, developmental maturity, and knowledge. The psychosocial constructs of goals/motivation and psychosocial/emotions were underrepresented in the instruments. No instrument mapped to every model construct. Two new constructs: independent living and organization were identified. Conclusions Constructs representing transition readiness in three frequently used transition readiness instruments vary considerably from Expanded SMART, a holistic conceptual model of transition readiness, suggesting that conceptualization and operationalization of transition readiness is not standardized. No instrument reflected all conceptual constructs of transition readiness and psychosocial constructs were underrepresented, suggesting that current instruments may provide an incomplete measurement of transition readiness.

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.

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 R eadiness and E xperiences of AD olescents and Y oung Adults with Co-occurring Physical and Mental Health Conditions Exit ing 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.