Background:At ages 16-21, youth with chronic medical conditions transition from pediatric to adult specialty care and often feel unprepared. Transition readiness assessments, including the validated Transition Readiness Assessment Questionnaire (TRAQ), may guide preparation; however, longitudinal evaluation is needed to determine their utility in supporting successful transitions. Objective:(1) To compare changes in TRAQ scores between baseline, 12, and 24 months among individuals enrolled in a randomized controlled trial (RCT); and (2) to highlight insights from youth with lived expertise transitioning to adult healthcare. Methods:This sub-study of the Transition Navigator Trial, a pragmatic RCT evaluating a patient navigator intervention, examined overall TRAQ scores among 129 participants. Group comparisons used the Mann-Whitney U test, and mixed models with random intercepts assessed associations between navigator access, time, and TRAQ scores. Fifteen youth partners with lived experience contributed perspectives through ongoing meetings and structured reflection on study findings; this involvement constitutes patient-oriented research and should not be interpreted as formal qualitative methodology. Results:At baseline, mean TRAQ scores did not differ significantly between intervention and control groups (β=0.05, p = 0.58, 95% CI -0.12, 0.22). Regardless of treatment allocation, mean TRAQ scores increased from baseline to 12 months (β=0.54, p < 0.001, 95% CI 0.44, 0.63) and from baseline to 24 months (β=0.68, p < 0.001, 95% CI 0.59, 0.78). Conclusions:Access to a patient navigator did not significantly influence TRAQ score trajectories; however, TRAQ scores increased significantly over time in both groups. These findings suggest that transition readiness, as measured by the TRAQ, may improve through lived experience during the transition period regardless of navigator access. Both groups received shared transition-related resources throughout the study, which may have contributed to the observed increases. Notably, the TRAQ was implemented as an indirect parallel measure in this study rather than a primary intervention target, and this should be considered when interpreting the null between-group finding. Partnering with youth enhanced interpretation of findings and underscored the importance of centering lived expertise when evaluating transition readiness outcomes.

BACKGROUND:Unilateral vocal fold immobility (UVFI) after pediatric cardiac surgery is prevalent; however, the burden of swallowing symptoms is unclear. HYPOTHESIS:We hypothesize that swallowing dysfunction is more prevalent in UVFI patients compared to non-UVFI patients, and that perioperative factors may influence swallowing symptom burden. METHODS:This was a retrospective cohort study of pediatric patients who underwent aortic arch surgery between 2013 and 2024 at the Stollery Children's Hospital. Exclusion criteria included bilateral vocal fold paralysis, genetic, or neurological comorbidities that could affect nerve function. Swallowing data from clinical and instrumental swallowing assessments were collected via chart review. Abnormal findings were compared between UVFI and non-UVFI patients. Associations between variables and aspiration on instrumental swallow assessments in UVFI patients were calculated through univariate analysis using a significance level of p < 005. RESULTS:234 patients of 1047 included in the study were diagnosed with UVFI. The mean gestational age was 37.0 (±4.7) weeks. There were 623 males and 424 females. UVFI patients were significantly more likely to undergo clinical and instrumental swallowing assessments compared to non-UVFI patients (p < 0.001, p < 0.001). Univariate analysis showed aortic coarctation (p = 0.012, OR = 0.07, CI = 0.01-0.56) was negatively associated with penetration or aspiration on instrumental swallowing assessments. CONCLUSIONS:Swallowing dysfunction is more common in patients who develop UVFI after cardiac surgery than those who do not. Patients who underwent aortic coarctation repair were less likely to have penetration or aspiration post-operatively. However, there were no other clear predictors or perioperative factors associated with a higher likelihood of swallowing dysfunction.

Purpose:Adolescents and young adults (AYA) living in rural communities have lower access to tertiary pediatric care than those in urban settings. However, all AYA with congenital heart disease (CHD) would benefit from transition programming to develop knowledge of their CHD and self-management skills in preparation for adult care. Previous studies have evaluated in-person delivery of transition programs. We sought to investigate the effectiveness of a virtual nurse-led pediatric-to-adult transition education program. Design and methods:We conducted a prospective cohort study investigating the impact of virtual nurse-led transition education on individuals aged 16-25 with CHD who receive cardiology care in outreach cardiology clinics in Alberta, Canada. Individual teaching sessions were led by a cardiology nurse and delivered virtually in a single 1-hour session. Participants were also provided access to the iHeartChange transition website. A pre-post analysis was performed with comparisons between baseline, 1-month, and 6-month follow-up. Outcome measures were CHD knowledge (MyHeart Scale), self-efficacy (Generalized Self-Efficacy Scale), and self-management skills (Transition-Q). Results:Twenty-five participants (56% female, mean age 17.7 ± 2.2 years) completed the virtual transition education and measures at baseline and both follow-ups. Improvements were observed across all outcomes from baseline to 1 month and from baseline to 6 months, except for self-efficacy, which showed an improvement between baseline and 6 months. Conclusions:Nurse-led virtual transition education can be effective at improving rural AYA's knowledge of their CHD and self-efficacy and self-management skills. Practice implications:Pediatric cardiology programs should implement virtual nurse-led transition education for patients who live remotely.

Background Adults with congenital heart disease (CHD) experience earlier and higher cardiovascular morbidity and mortality than the general population. Serious illness conversations (SICs) can help align care with patients’ values and preferences but are underused, partly because clinicians lack guidance on when to initiate them. Objectives This study aimed to develop consensus-based clinical criteria that should prompt SICs in adults with CHD, incorporating perspectives from clinical experts, people with lived experience (PWLE), and advocacy group representatives. Methods In a modified Delphi study, an international panel of 39 health care professionals rated 67 potential SIC trigger criteria over 3 rounds. Consensus was predefined as ≥70% agreement. A second panel of 4 PWLEs and 4 advocacy group representatives rated the Round 1 consensus triggers for appropriateness. Triggers deemed sufficient on their own were labeled as “major,” those requiring at least one additional criterion were labeled as “minor.” Results Forty-one clinical experts were invited, of which 39 agreed to participate. Response rates were 94.9% in Rounds 1 and 2, and 92.3% in Round 3. Fifty of 67 criteria (74.6%) reached consensus in Round 1, and all were judged appropriate by PWLE and advocacy group representatives. Eighteen criteria were classified as major, spanning “patient needs,” “CHD-defect characteristics,” “lifetime events,” “preintervention” triggers, “disease progression,” and the surprise question. Conclusions This international consensus identified 18 major trigger criteria to support timely SIC initiation in adults with CHD. These criteria span diverse clinical scenarios and provide a practical framework for integrating SICs into routine care for adults with CHD.

BACKGROUND:Exercise capacity is reduced in adults with congenital heart disease (ACHD) and associated with adverse prognosis. Our objective was to explore the efficacy of high-intensity interval training (HIIT) compared with moderate continuous training (MCT) on improving exercise capacity in this population. METHODS:A 3-arm single centre randomized controlled trial was conducted to evaluate the effect of 12 weeks of exercise training (HIIT vs MCT) vs control in ACHD. The primary outcome was a change in peak oxygen uptake (VO2) between baseline and 12 weeks. Secondary outcomes included exercise-related adverse events, changes in cardiac structure and function, and quality of life scores. RESULTS:Thirty-two ACHD were included, with a mean age of 32 ± 11 (range, 24-39) years, 56% were male with average peak VO2 of 27.8 ± 7.0 mL/kg/min at baseline. Exercise training for 12 weeks with HIIT significantly increased peak VO2 by 3.7 ± 3.8 mL/kg/min (P = 0.001), whereas MCT improved peak VO2 by 2.1 ± 3.1 mL/kg/min (P = 0.01), compared with no change in the control group, -1.3 ± 3.0 mL/kg/min (P = 0.44). No adverse events occurred with exercise training. Cardiac magnetic resonance imaging-derived ventricular volumes and ejection fraction were unchanged after exercise training. However, HIIT increased left ventricular mass by 8% (P = 0.02). Exercise training had no effect on quality of life. CONCLUSIONS:HIIT and MCT improved peak VO2 and were feasible, safe, and did not produce adverse cardiac remodelling in ACHD. HIIT was associated with an adaptive increase in left ventricular mass and should be considered as part of comprehensive cardiac rehabilitation. CLINICAL TRIAL REGISTRATION:NCT07546227.

The life expectancy of people living with a Fontan circulation has improved significantly over recent decades. However, this population remains at risk of multiorgan complications and premature mortality with advancing age. Despite growing clinical experience, key knowledge gaps remain in our understanding of Fontan-related morbidity, including the timing, predisposition and progression of complications, their cumulative burden, and their long-term impact on quality of life and functional outcomes. To address these challenges, we establish Canadian Fontan Connection (CANFON), a national, longitudinal cohort of individuals with single ventricle physiology who are either eligible for or living with a Fontan circulation. The design and implementation of CANFON were developed through engagement with Canadian congenital heart disease experts and alignment with international research priorities. Comprehensive clinical data are collected and banked from birth onward, providing an in-depth, lifelong view of each participant's health. In parallel, participant-reported outcome measures are prospectively collected over a 5-year period. Recruitment occurs in 24 pediatric and adult congenital heart disease centers across Canada. The overarching objectives of CANFON are to (1) establish the health trajectories of Fontan physiology across the lifespan, (2) determine the prevalence and evolution of complications and modifying factors, (3) identify early predictors and risk factors for Fontan failure, and (4) assess the impact of complications on quality of life and functional status through participant-reported outcomes. Beyond its immediate goals, CANFON will serve as a unique, well-phenotyped, pan-Canadian research platform to support nested studies and accelerate progress in understanding and improving outcomes for individuals living with a Fontan circulation nationally and internationally.

Importance Transition to adult care is a challenging and complex process for youth and emerging adults with chronic health and/or mental health conditions. Patient navigation has been proposed to improve care during transition, but previous studies have used single disease cohorts with a nonrandomized design. Objective To compare the effectiveness of a patient navigator service to reduce emergency department (ED) use among adolescents and emerging adults with chronic health and/or mental health conditions undergoing transition to adult-oriented health care. Design, Setting, and Participants This was a pragmatic, parallel-group, nonblinded randomized clinical trial design. Patients were followed up for a minimum 12 months and maximum 24 months after enrollment. The setting was the Canadian province of Alberta, with a population of 4.3 million inhabitants, having 3 tertiary care pediatric hospitals serving the entire population with universal health coverage. Participants included youth aged 16 to 21 years, followed up within a diverse array of chronic care clinics, expected to be transferred to adult care within 12 months, residing in Alberta, Canada. Interventions A 1:1 allocation to either access to a personalized navigator, an experienced social worker within the health services environment, or usual care, for up to 24 months after randomization. Main Outcomes and Measures All-cause ED visit rate while under observation. Results A total of 335 participants were randomized over a period of 45 months, 164 (49.0%) to the intervention arm and 171 (51.0%) to usual care. After 1 patient withdrew, 334 participants (usual care: mean [SD] age, 17.8 [0.7] years; 99 female [57.9%]; intervention: mean [SD] age, 17.7 [0.6] years; 81 male [49.7%]) were included in the final data analysis. Among the participants, 131 (39.2%) resided in a rural location, and 126 (37.7%) had a self-reported mental health comorbidity during baseline assessment. We observed significant effect modification in the relationship between intervention and ED visits based on mental health comorbidity. Among those with a self-reported mental health condition, ED visit rates were lower in those with access to the navigator, but the association was not significant (adjusted incidence rate ratio [IRR] 0.75; 95% CI, 0.47-1.19). Among those with no mental health comorbidity, the corresponding adjusted IRR was 1.45 (95% CI, 0.95-2.20). Conclusions and Relevance In this randomized clinical trial, the navigator intervention was not associated with a significant reduction in ED visits among youth with chronic health conditions transitioning to adult care. The study did not accrue sufficient sample size to demonstrate a significant difference between groups should it exist. Trial Registration ClinicalTrials.gov Identifier: NCT03342495

BACKGROUND:Cardiovascular dimensions measured during pediatric echocardiograms must be normalized for body size. However, other variables may confound their interpretation, such as age and abnormal body habitus. This retrospective cross-sectional study of the Canadian Congenital and Pediatric Cardiology Research Network aimed to create Z score equations for commonly measured dimensions in pediatric 2-dimensional echocardiography that were free of residual confounding effects of body size, body mass index, and age. METHODS:The reference sample consisted of >20 000 children without heart disease from 9 institutions who underwent clinical echocardiography that was reported as normal. A generalized additive model for location, scale, and shape (GAMLSS) was used to model the expected distributions of measurements as a function of sex, height, weight, body mass index, and age. RESULTS:Compared with a model that only considered body surface area, the proposed Z scores demonstrated less bias in subgroups of overweight, young, and early school-aged children. CONCLUSIONS:The proposed Z score equations may improve diagnostic and therapeutic accuracy by ensuring that body size, body mass index, and age do not confound the interpretation of measurements.

Background:An effective in-clinic physical activity counseling intervention is needed to increase physical activity motivation and participation among children with moderate or severe congenital heart disease and enable clinicians to comply with activity promotion recommendations. Methods:This pragmatic, single-blind multicenter randomized clinical trial evaluated the intervention feasibility/efficacy among children aged 5-17 years. Clinicians delivered key messages, encouraged activity questions and discussion, and provided kinesiologist support. The primary outcome was daily activity (PiezoRx pedometer steps), assessed after the clinic visit and then monthly for 6 months. Clinic visit length, % counseled, patient/family perceptions, and kinesiology referral assessed health care system impacts. Results:A total of 155 children (60 female, 10.8 ± 3.6 years of age) with moderate (n = 119) or severe (n = 36) diagnoses were included in this study. Initial daily step counts, adjusted for age, did not differ between the groups (mean difference = 776 ± 515 steps per day, P = 0.13). Typically active intervention participants' mean daily steps over 6 months (adjusted for baseline age, sex, season, and steps) were stable above 12,000 steps per day. Typically active control steps declined, becoming significantly below intervention participants by month 5 (P = 0.006). Highly active participants at baseline (>14,000 steps per day) in both study groups maintained their activity (P = 0.91). Virtually all (97%) intervention participants were counseled, and the clinic visit duration did not differ by group (P = 0.95). Conclusions:Over 6 months, participants receiving a brief, standardized in-clinic activity counseling intervention with on-going kinesiology support were more likely to achieve the recommended daily physical activity. Counseling was feasible for clinicians to deliver during a routine clinic visit enabling compliance with recommended practice. Clinical Trial Registration:ClinicalTrials.gov #NCT03435354.

PURPOSE:To assess biases in physical activity beliefs/behaviors between research volunteers and those assessed through clinical care. METHOD:Physical activity behavior (pedometer steps) and adequacy/predilection (Children's Self-Perceptions of Adequacy in and Predilection for Physical Activity scale) were compared among 198 pediatric cardiology patients (5-17 y) with moderate/severe congenital heart disease. Volunteers (n = 142, 59% male, 11.0 (3.4) y) participated in a multicenter activity trial. The clinical subgroup (n = 56, 58% male, 11.1 (4.0) y) completed assessments during a routine clinical encounter. Independent t tests compared outcomes within child/adolescent age groups. RESULTS:Child volunteers tended to report higher activity adequacy (mean difference = 1.9 (1.0), P = .06) than clinic patients, suggesting increased confidence for activity participation. Daily steps did not differ between groups (P > .10). The extra 1600 steps per day among volunteers enabled child volunteers to achieve the recommended 12,000 steps per day. Cardiologist reported activity restrictions were associated with more steps per day (P < .01). CONCLUSION:Research volunteers may be more likely to achieve daily physical activity recommendations. Child volunteers tend to be more confident in their ability to participate successfully. Cardiologist reported activity restrictions may provide confidence regarding appropriate types of activity, leading children and adolescents to take more steps each day. Physical activity research participants and those with cardiologist reported activity restrictions may not reflect those most in need of additional support.

The population of adolescents with congenital heart disease (CHD) is growing exponentially and requires transition preparation for adult-oriented health care. Nurse-led transition programs are effective in improving CHD knowledge and self-management skills. However, many clinical programs lack the human resources needed to provide transition services. Mobile health applications have the potential to prepare transition-age youth for entering adult health care. However, there are no outcome data on the impact and effectiveness of CHD transition applications. Accordingly, in partnership with a Youth Advisory Council, we developed the MyREADY Transition CHD App (the App) designed to enhance youth CHD knowledge and self-management skills. The READYorNot CHD study is a multicenter, cluster randomized noninferiority clinical trial that is evaluating the efficacy of the App plus limited nurse teaching (intervention), vs comprehensive nurse-only teaching (control) for 16- to 17-year-olds with moderate or complex CHD. Participants are being enrolled in clusters based on week of attendance in the pediatric cardiology clinic, with a 1:1 allocation between intervention vs control and target recruitment of 204 participants. The primary outcome is the change in Transition Readiness Assessment Questionnaire score from baseline to 18 months. Secondary outcomes are change in CHD knowledge score, self-efficacy, and time to first adult CHD appointment. Semistructured interviews will provide additional insights into the advantages and disadvantages of the App vs nurse-only teaching. This study will inform patients, pediatric cardiology programs, and policy makers in judging whether this mobile health intervention warrants widespread availability in clinical settings to improve transition outcomes of adolescents with CHD. Clinical Trial Registration: NCT04463446.

Background:Adults with congenital heart disease (CHD) face increased risks of premature morbidity and mortality. Advance care planning (ACP) facilitates longitudinal, patient-centered care but remains underused in this population, partly due to the lack of validated trigger criteria to initiate ACP. This study aimed to systematically review the literature to identify proposed triggers to initiate ACP conversations in adults with CHD. Methods:We conducted a systematic search of MEDLINE, Embase, PsycInfo, CINAHL, Web of Science, Scopus, and the Cochrane Library from database inception to July 26, 2024. The search focused on 2 core concepts: CHD and adults, and ACP or palliative care. Two reviewers independently screened articles for inclusion and extracted potential trigger criteria for ACP initiation. Results:Of 4257 articles screened, 21 were included for data extraction. Nearly half (48%) were published between 2020 and 2024, with most (81%) appearing in cardiology journals. ACP was most often recommended during routine follow-up (15 articles, 71%), independent of defect complexity or functional status. Specific interventions (10 articles, 48%) and signs of disease progression (10 articles, 48%) were the second most frequently cited trigger criteria, followed by defect-specific triggers (7 articles, 33%). Symptom- and patient-based triggers were less frequently reported. Conclusions:This review highlights a wide range of proposed triggers and a lack of consensus on when to initiate ACP in adults with CHD. The identified triggers can inform clinical practice and serve as a foundation for developing standardized criteria. However, findings are limited by the heterogeneity among the included studies. Registration:PROSPERO CRD42024597771.

Background In the FUEL (Fontan Udenafil Exercise Longitudinal) trial, a positive treatment effect was identified for outcomes at the ventilatory anaerobic threshold but not for the primary outcome, oxygen consumption (Vo2) at peak exercise. This disparate response may be explained by the physiologic challenge of improving peak Vo2 in participants with near‐normal baseline exercise performance. Methods Participants were divided into subgroups by baseline predicted peak Vo2 (<80% versus ≥80%). Treatment effect was evaluated in those with a baseline peak Vo2 <80% predicted and linear regression was performed to examine the interaction between subgroup and response to therapy for the primary and secondary outcomes. Results Of the 379 participants with paired exercise data, 302 (80%) had a baseline peak Vo2 <80% predicted. In this subgroup, the primary outcome of peak Vo2 improved significantly after 6 months of udenafil treatment, when compared with placebo (0.23±4.17 mL/kg per min versus −0.90±3.74 mL/kg per min; P=0.021). Secondary outcome measures, including Vo2 at ventilatory anaerobic threshold (P=0.023), work at ventilatory anaerobic threshold (P=0.032), and the myocardial performance index (P=0.007) were all significantly improved as well. A significant interaction was found between exercise subgroups and response to udenafil for peak Vo2 (P=0.036) but not for other outcomes. Conclusions In this post hoc subgroup analysis, after exclusion of patients with Fontan circulation with near‐normal baseline peak Vo2, a positive treatment effect of udenafil was identified for the primary outcome of peak Vo2. The interaction between baseline peak Vo2 and treatment may have influenced the outcome of the FUEL trial. Registration URL: https://clinicaltrials.gov; Unique identifier: NCT0274115.

Importance:Transition to adult care is a challenging and complex process for youth and emerging adults with chronic health and/or mental health conditions. Patient navigation has been proposed to improve care during transition, but previous studies have used single disease cohorts with a nonrandomized design. Objective:To compare the effectiveness of a patient navigator service to reduce emergency department (ED) use among adolescents and emerging adults with chronic health and/or mental health conditions undergoing transition to adult-oriented health care. Design, Setting, and Participants:This was a pragmatic, parallel-group, nonblinded randomized clinical trial design. Patients were followed up for a minimum 12 months and maximum 24 months after enrollment. The setting was the Canadian province of Alberta, with a population of 4.3 million inhabitants, having 3 tertiary care pediatric hospitals serving the entire population with universal health coverage. Participants included youth aged 16 to 21 years, followed up within a diverse array of chronic care clinics, expected to be transferred to adult care within 12 months, residing in Alberta, Canada. Interventions:A 1:1 allocation to either access to a personalized navigator, an experienced social worker within the health services environment, or usual care, for up to 24 months after randomization. Main Outcomes and Measures:All-cause ED visit rate while under observation. Results:A total of 335 participants were randomized over a period of 45 months, 164 (49.0%) to the intervention arm and 171 (51.0%) to usual care. After 1 patient withdrew, 334 participants (usual care: mean [SD] age, 17.8 [0.7] years; 99 female [57.9%]; intervention: mean [SD] age, 17.7 [0.6] years; 81 male [49.7%]) were included in the final data analysis. Among the participants, 131 (39.2%) resided in a rural location, and 126 (37.7%) had a self-reported mental health comorbidity during baseline assessment. We observed significant effect modification in the relationship between intervention and ED visits based on mental health comorbidity. Among those with a self-reported mental health condition, ED visit rates were lower in those with access to the navigator, but the association was not significant (adjusted incidence rate ratio [IRR] 0.75; 95% CI, 0.47-1.19). Among those with no mental health comorbidity, the corresponding adjusted IRR was 1.45 (95% CI, 0.95-2.20). Conclusions and Relevance:In this randomized clinical trial, the navigator intervention was not associated with a significant reduction in ED visits among youth with chronic health conditions transitioning to adult care. The study did not accrue sufficient sample size to demonstrate a significant difference between groups should it exist. Trial Registration:ClinicalTrials.gov Identifier: NCT03342495.

Background There is a paucity of data regarding the impact of remoteness of residence (RoR) and socioeconomic status (SES) on access to care and outcomes for children with congenital heart disease (CHD) or acquired heart disease (AHD) in a jurisdiction of universal health and centralized cardiac care. Objectives The primary objective was to examine whether RoR, SES, and their interaction impact access to health care and outcomes for children with heart disease in Alberta, Canada. Methods This was a population-based study of children with CHD or AHD born between January 1, 2005, and December 31, 2017, in Alberta, Canada. Primary outcomes included age at diagnosis, time from diagnosis to intervention, number of annual primary care visits, annual cardiologist visits, annual emergency room visits, and survival. Multivariable Cox proportional hazards models identified independent associations. Longitudinal relationships between the number of annual physician visits and RoR and SES were assessed with multivariable Poisson models. Results We included 12,542 children (94% CHD, 6% AHD), 70.4% living <60 minutes’ drive of a cardiac center, and 10.9% residing >180 minutes away. RoR and SES were not associated with age at diagnosis, time from diagnosis to intervention, annual primary care visits, or transplant free survival for either CHD or AHD. Although SES demonstrated no impact, annual annual cardiologist visits were inversely related to RoR for CHD (60-180 minutes rate ratio [RR]: 0.83, 95% CI: 0.73-0.95; >180 minutes RR: 0.77, 95% CI: 0.67-0.88; P < 0.0001) and AHD (60-180 minutes RR: 0.63, 95% CI: 0.39-1.00; >180 minutes RR: 0.53, 95% CI: 0.34-0.84; P = 0.02). Additionally, increased annual emergency room visits were associated with further RoR (P < 0.001) in both CHD and AHD and lower SES (P < 0.001) only for those with CHD. Conclusions Age at diagnosis, time to intervention, annual primary care visits, and transplant-free all-cause survival were not impacted by RoR or SES in children with heart disease. Greater RoR and SES, however, were associated with fewer annual cardiology visits and increased annual emergency room visits, which highlights the need for novel surveillance strategies for remote pediatric patients with heart disease.

This study examined the experiences of Indigenous youth and young adults with pediatric onset chronic health conditions who had or were about to transition from pediatric to adult healthcare services. Transition is the process by which youth develop the knowledge and self-management skills needed to manage their health condition, ideally beginning around age 12–13 and continuing until the mid-20s. There is a growing body of literature on healthcare transition, but there is an absence of literature on Indigenous youth, who face additional barriers to accessing healthcare relative to non-Indigenous Canadians. The primary objective of this study was to identify the supports and barriers for Indigenous youth with childhood-onset chronic health conditions transitioning from pediatric to adult healthcare services. The research was done in the province of Alberta, Canada, in collaboration with a Community Advisory Committee comprised of Indigenous healthcare providers, Elders and Knowledge Keepers and guided by a community-based participatory research approach. Semi-structured qualitative interviews (n = 46) were conducted with Indigenous youth, caregivers, and healthcare providers. There were three Talking Circles, two for youth (9 participants) and one for caregivers (6 participants). Three research assistants coded the transcripts thematically using NVivo. The key findings were presented to the Community Advisory Committee for feedback to validate the interpretation of the qualitative data. The thematic findings include: (1) systemic inequalities exacerbate gaps in healthcare; (2) intergenerational trauma created unique barriers for Indigenous youth; (3) long-term relationships with care providers as a protective factor; (4) the incorporation of Indigenous worldviews into healthcare services to aid transition; and (5) assuming new responsibilities as an adult. The participants provided recommendations to improve healthcare service delivery including the need for Indigenous transition supports in community and improving education for healthcare practitioners about transition and Indigenous worldviews. This study demonstrates the complexity of the transition experience for Indigenous youth with pediatric onset chronic health conditions. The identified barriers to successful transition could be addressed through systems level changes and the development of Indigenous specific transition support services. Such approaches need to be Indigenous-led and incorporate Indigenous culture, language, and teachings.

BackgroundThe transition from pediatric to adult care is a period associated with adverse health outcomes (e.g., health care dropout, health deterioration and poor adherence to management) for adolescents and young adults (AYA) with chronic conditions and their caregivers. AYA and caregivers often struggle to adapt to adult care settings resulting from a lack of preparedness and difficulties accessing services to manage their health conditions. To adequately design transition interventions and supports, it is critical to explore what skills AYA think would increase their confidence and ability to successfully move into adult health care.MethodsThe Transition Navigator Trial is a randomized controlled trial being conducted in Alberta, Canada, recruiting from three major tertiary care pediatric centers, in which half of participants receive a patient navigator, whose goal is to assist with this transition. Twenty-seven youth were interviewed at baseline, with a planned follow-up interview at the end of the trial. Participants were asked about their perspectives on the upcoming transition and how working with the navigator may assist with the transfer to adult-oriented services. Using an inductive approach to thematic analysis, baseline interviews were analyzed to explore AYA perspectives on their wants and needs for an upcoming transition to adult health care. The overarching guiding question is: what skills do AYA desire to assist with the transition to adult health care services?ResultsTwo broad themes were generated based on participant baseline interviews: 1) ownership of care; and 2) system navigation. Participants identified that self-management and self-advocacy skills are essential for taking ownership of their own healthcare. Participants identified that even when they have acquired the necessary skills to take ownership of their care, there is a further step of system navigation that they might require external help with.ConclusionsIt has been highlighted in the literature that health-related knowledge, self-advocacy, and self-management skills promote a more successful transition, however, a gap exists in what youth prioritize as important skills. These findings exemplify that AYA want to gain skills that will allow for independence and success in the transition to adult health care. By involving youth in the development of future transition interventions, we can better understand the needs and priorities of AYA to assist in the success of transition to adult health care.