Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol.

INTRODUCTION: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. METHODS AND ANALYSIS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. PROTOCOL REGISTRATION: https://osf.io/beqjr.

Gender diversity among adolescents with obesity in a weight management programme.

Gender dysphoria (GD) and obesity share commonalities, including associations with mental health comorbidities, disordered eating, body dissatisfaction and may intensify with physical and developmental changes during adolescence. While associations of obesity and gender diversity have been identified, rates of gender diversity among adolescents with obesity remain unclear. The aim was to examine gender diversity among adolescents with obesity in a weight management programme. A single-centre cross-sectional questionnaire study was conducted. Eligible adolescents received the Gender Identity/GD Questionnaire for Adolescents and Adults (GIDYQ-AA), a validated instrument measuring gender diversity and GD. Gender identities, sexual orientations, questionnaire scores, and frequency of GD (GIDYQ-AA score <3) were determined. The relationship of GIDYQ-AA scores and BMI Z-score (BMIz) was assessed. Of 72 consenting youth, 29 assigned females (AF) and 17 assigned males (AM) completed GIDYQ-AA and demographic questions. Seventeen (59%) AF reported non-heterosexual orientations, and 6 (21%) reported non-cisgender identities. One (6%) AM reported non-cisgender identity. Two (4%) AF individuals had GD based on GIDYQ-AA scores. GIDYQ-AA scores did not correlate with BMIz. In conclusion, adolescents with obesity, particularly AF with non-heterosexual orientation, reported high rates of non-cisgender identity and GD. Routine screening for gender-related concerns in weight management settings may be warranted.

Sexual and Reproductive Health Outcomes Among Adolescent Females During the COVID-19 Pandemic.

BACKGROUND AND OBJECTIVES: Coronavirus disease 2019 (COVID-19) posed a significant threat to adolescents' sexual and reproductive health. In this study, we examined population-level pregnancy and sexual health-related care utilization among adolescent females in Ontario, Canada during the pandemic and evaluated relationships between these outcomes and key sociodemographic characteristics. METHODS: This was a population-based, repeated cross-sectional study of >630 000 female adolescents (12-19 years) during the prepandemic (January 1, 2018-February 29, 2020) and COVID-19 pandemic (March 1, 2020-December 31, 2022) periods. Primary outcome was pregnancy; secondary outcomes were contraceptive management visits, contraception prescription uptake, and sexually transmitted infection (STI) management visits. Poisson models with generalized estimating equations for clustered count data were used to model pre-COVID-19 trends and forecast expected rates during the COVID-19 period. Absolute rate differences between observed and expected outcome rates for each pandemic month were calculated overall and by urbanicity, neighborhood income, immigration status, and region. RESULTS: During the pandemic, lower-than-expected population-level rates of adolescent pregnancy (rate ratio 0.87; 95% confidence interval [CI]:0.85-0.88), and encounters for contraceptive (rate ratio 0.82; 95% CI:0.77-0.88) and STI management (rate ratio 0.52; 95% CI:0.51-0.53) were observed. Encounter rates did not return to pre-pandemic rates by study period end, despite health system reopening. Pregnancy rates among adolescent subpopulations with the highest pre-pandemic pregnancy rates changed least during the pandemic. CONCLUSIONS: Population-level rates of adolescent pregnancy and sexual health-related care utilization were lower than expected during the COVID-19 pandemic, and below-expected care utilization rates persist. Pregnancy rates among more structurally vulnerable adolescents demonstrated less decline, suggesting exacerbation of preexisting inequities.

A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study.

BACKGROUND: Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted. OBJECTIVE: This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT). METHODS: A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70%) and their caregivers (7/23, 30%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero). RESULTS: Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants' feedback, CONNECT was deemed satisfactory, as it was believed that the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care and the choice to remain anonymous to other participants. CONCLUSIONS: Web-based patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities.

Adolescent Health Care Needs and Relationship to Disease in Patients With Childhood-Onset Systemic Lupus Erythematosus.

OBJECTIVE: Our objective was to characterize adolescent health and psychosocial issues in patients with childhood-onset systemic lupus erythematosus (cSLE) and evaluate demographic and disease characteristics associated with adolescent health. METHODS: We retrospectively examined adolescents aged 12 to 18 years with cSLE seen at the Hospital for Sick Children meeting the American College of Rheumatology/Systemic Lupus International Collaborating Clinics classification criteria, assessed by adolescent medicine in the cSLE clinic between 2018 and 2020. Adolescent health issues were characterized using the Home, Education/Employment, Activities, Diet/Drugs, Sexuality, Suicide/mood (HEADDSS) framework. Issues were classified as presenting and/or identified; adolescent health burden was tabulated as the number of distinct adolescent issues per patient. Multiple Poisson regression models examined associations between patient and disease characteristics (age, sex, material deprivation, disease activity, disease damage, and high-dose glucocorticoid exposure) and adolescent health issues. RESULTS: A total of 108 (60%) of 181 adolescents with cSLE were seen by adolescent medicine, with a median of 2 (interquartile range [IQR] 1-3) visits and a median of 2 (IQR 1-5) adolescent health issues during the study period. Common issues were mood (presenting in 21% vs identified in 50%), sleep (27% vs 2%), school and education (26% vs 1%), and nonadherence (23% vs 8%). Psychoeducation was provided by adolescent medicine to 54% of patients. High-dose glucocorticoids (risk ratio [RR] 1.82, 95% confidence interval [CI] 1.41-2.35, P < 0.001), material deprivation (RR 1.17, 95% CI 1.04-1.30, P = 0.007), and lower SLE Disease Activity Index scores (RR 0.95, 95% CI 0.92-0.98, P = 0.004) were associated with higher adolescent health burden. CONCLUSION: Adolescents with cSLE experience many adolescent issues, especially low mood. High-dose glucocorticoids and social marginalization are associated with greater adolescent health burden. This study highlights the importance of addressing adolescent health needs as part of routine care.

Social and Structural Drivers of Health and Transition to Adult Care.

CONTEXT: Youth with chronic health conditions experience challenges during their transition to adult care. Those with marginalized identities likely experience further disparities in care as they navigate structural barriers throughout transition. OBJECTIVES: This scoping review aims to identify the social and structural drivers of health (SSDOH) associated with outcomes for youth transitioning to adult care, particularly those who experience structural marginalization, including Black, Indigenous, and 2-spirit, lesbian, gay, bisexual, transgender, queer or questioning, and others youth. DATA SOURCES: Medline, Embase, CINAHL, and PsycINFO were searched from earliest available date to May 2022. STUDY SELECTION: Two reviewers screened titles and abstracts, followed by full-text. Disagreements were resolved by a third reviewer. Primary research studying the association between SSDOH and transition outcomes were included. DATA EXTRACTION: SSDOH were subcategorized as social drivers, structural drivers, and demographic characteristics. Transition outcomes were classified into themes. Associations between SSDOH and outcomes were assessed according to their statistical significance and were categorized into significant (P < .05), nonsignificant (P > .05), and unclear significance. RESULTS: 101 studies were included, identifying 12 social drivers (childhood environment, income, education, employment, health literacy, insurance, geographic location, language, immigration, food security, psychosocial stressors, and stigma) and 5 demographic characteristics (race and ethnicity, gender, illness type, illness severity, and comorbidity). No structural drivers were studied. Gender was significantly associated with communication, quality of life, transfer satisfaction, transfer completion, and transfer timing, and race and ethnicity with appointment keeping and transfer completion. LIMITATIONS: Studies were heterogeneous and a meta-analysis was not possible. CONCLUSIONS: Gender and race and ethnicity are associated with inequities in transition outcomes. Understanding these associations is crucial in informing transition interventions and mitigating health inequities.

Pediatric Patients Hospitalized With Eating Disorders in Ontario, Canada, Over Time.

Importance: Understanding the evolving characteristics of pediatric patients hospitalized for eating disorders is important to ensure that services and treatments align with patient needs. Objective: To examine temporal trends in the rates of hospitalizations for pediatric eating disorders by clinical and demographic characteristics in Ontario, Canada, over a 17-year period. Design, Setting, and Participants: This population-based, repeated, cross-sectional study used linked health administrative and demographic databases in Ontario, Canada, to identify individuals aged 5 to 17 years hospitalized with eating disorder diagnoses from April 1, 2002, to March 31, 2020. Data analyses were performed from May 2021 to June 2023. Exposure: Fiscal year (April 1-March 31) of eating disorder hospitalization. Main Outcomes and Measures: Outcomes of interest were absolute and relative changes in pediatric eating disorder hospitalization rates overall and stratified by patient sex, age groups, and eating disorder diagnostic groups. Results: Over the study period, there were 11 654 pediatric eating disorder hospitalizations, of which 5268 (45.2%) were for anorexia nervosa and 1374 (11.8%) were for bulimia nervosa. There were a total of 10 648 hospitalizations (91.4%) among female patients, and the median (IQR) age was 15.0 (14-0-16.0) years. Hospitalization rates increased 139% from 2002 to 2019, from 2.0 per 10 000 population to 4.8 per 10 000 population. The largest relative changes were observed among male patients (416%; from 0.2 per 10 000 population to 1.1 per 10 000 population), individuals aged 12 to 14 years (196%; from 2.2 per 10 000 population to 6.6 per 10 000 population), and individuals with eating disorders other than anorexia or bulimia nervosa (255%; from 0.6 per 10 000 population to 2.1 per 10 000 population). Male patients, younger adolescents, and individuals with other eating disorders also represented larger proportions of hospitalizations by fiscal 2019. Conclusions and Relevance: In this cross-sectional study of eating disorder hospitalizations, pediatric hospitalizations increased over time, particularly among populations traditionally considered atypical. Existing eating disorder programs must adapt to accommodate changing patient presentations and increased volumes to ensure effective care delivery.

New and continuing physician-based outpatient mental health care among children and adolescents during the COVID-19 pandemic in Ontario, Canada: a population-based study.

Objective: To assess physician-based mental health care utilization during the COVID-19 pandemic among children and adolescents new to care and those already engaged with mental health services, and to evaluate differences by sociodemographic factors. Study design: We performed a population-based repeated cross-sectional study using linked health and administrative databases in Ontario, Canada among all children and adolescents 3-17 years. We examined outpatient visit rates per 1,000 population for mental health concerns for those new to care (no physician-based mental healthcare for ≥1 year) and those with continuing care needs (any physician-based mental healthcare <1 year) following onset of the pandemic. Results: Among ~2.5 million children and adolescents (48.7% female, mean age 10.1 ± 4.3 years), expected monthly mental health outpatient visits were 1.5/1,000 for those new to mental health care and 5.4/1,000 for those already engaged in care. Following onset of the pandemic, visit rates for both groups were above expected [adjusted rate ratio (aRR) 1.22, 95% CI 1.17, 1.27; aRR 1.10, 95% CI 1.07, 1.12] for new and continuing care, respectively. The greatest increase above expected was among females (new: aRR 1.33, 95% CI 1.25, 1.42; continuing: aRR 1.22 95% CI 1.17, 1.26) and adolescents ages 13-17 years (new: aRR 1.31, 95% CI 1.27, 1.34; continuing: aRR 1.15 95% CI 1.13, 1.17). Mood and anxiety concerns were prominent among those new to care. Conclusion: In the 18 months following onset of the pandemic, outpatient mental health care utilization increased for those with new and continuing care needs, especially among females and adolescents.

Acute presentations of eating disorders among adolescents and adults before and during the COVID-19 pandemic in Ontario, Canada.

BACKGROUND: Increased rates of pediatric eating disorders have been observed during the COVID-19 pandemic, but little is known about trends among adults. We aimed to evaluate rates of emergency department visits and hospital admissions for eating disorders among adolescents and adults during the pandemic. METHODS: We conducted a population-based, repeated cross-sectional study using linked health administrative data for Ontario residents aged 10-105 years during the prepandemic (Jan. 1, 2017, to Feb. 29, 2020) and pandemic (Mar. 1, 2020, to Aug. 31, 2022) periods. We evaluated monthly rates of emergency department visits and hospital admissions for eating disorders, stratified by age. RESULTS: Compared with expected rates derived from the prepandemic period, emergency department visits for eating disorders increased during the pandemic among adolescents aged 10-17 years (7.38 v. 3.33 per 100 000; incidence rate ratio [IRR] 2.21, 95% confidence interval [CI] 2.17-2.26), young adults aged 18-26 years (2.79 v. 2.46 per 100 000; IRR 1.13, 95% CI 1.10-1.16) and older adults aged 41-105 years (0.14 v. 0.11 per 100 000; IRR 1.15, 95% CI 1.07-1.24). Hospital admissions for eating disorders increased during the pandemic for adolescents (8.82 v. 5.74 per 100 000; IRR 1.54, 95% CI 1.54-1.54) but decreased for all adult age groups, especially older adults aged 41-105 years (0.21 v. 0.30 per 100 000; IRR 0.72, 95% CI 0.64-0.80). INTERPRETATION: Emergency department visits for eating disorders increased among adolescents, young adults and older adults during the pandemic, but hospital admissions increased only for adolescents and decreased for all adult groups. Differential rates of acute care use for eating disorders by age have important implications for allocation of inpatient mental health resources.

Self-harm among youth during the first 28 months of the COVID-19 pandemic in Ontario, Canada: a population-based study.

BACKGROUND: Youth have reported worsening mental health during the COVID-19 pandemic. We sought to evaluate rates of pediatric acute care visits for self-harm during the pandemic according to age, sex and mental health service use. METHODS: We conducted a population-based, repeated cross-sectional study using linked health administrative data sets to measure monthly rates of emergency department visits and hospital admissions for self-harm among youth aged 10-17 years between Jan. 1, 2017, and June 30, 2022, in Ontario, Canada. We modelled expected rates of acute care visits for self-harm after the pandemic onset based on prepandemic rates. We reported relative differences between observed and expected monthly rates overall and by age group (10-13 yr and 14-17 yr), sex and mental health service use (new and continuing). RESULTS: In this population of about 1.3 million children and adolescents, rates of acute care visits for self-harm during the pandemic were higher than expected for emergency department visits (0.27/1000 population v. 0.21/1000 population; adjusted rate ratio [RR] 1.29, 95% confidence interval [CI] 1.19-1.39) and hospital admissions (0.74/10 000 population v. 0.43/10 000 population, adjusted RR 1.72, 95% CI 1.46-2.03). This increase was primarily observed among females. Rates of emergency department visits and hospital admissions for self-harm were higher than expected for both those aged 10-13 years and those aged 14-17 years, as well as for both those new to the mental health system and those already engaged in care. INTERPRETATION: Rates of acute care visits for self-harm among children and adolescents were higher than expected during the first 2 and a half years of the COVID-19 pandemic, particularly among females. These findings support the need for accessible and intensive prevention efforts and mental health supports in this population.

Population-Based Repeated Cross-Sectional Study of Hospitalizations for Comorbid Physical and Psychiatric Disorders in Young Adults in Ontario, Canada.

PURPOSE: To measure trends in the rates and costs of hospitalizations over a 15-year period among young adults with physical and/or psychiatric disorders. METHODS: This population-based, repeated cross-sectional study identified all 18- to 26- year-olds hospitalized in Ontario, Canada from April 1, 2003 and March 31, 2018 (fiscal years 2003-2017). Using discharge diagnoses, we assigned hospitalizations to one of four categories: 1) psychiatric disorder only; 2) primary psychiatric disorder with comorbid physical illness; 3) primary physical with comorbid psychiatric disorder; and 4) physical illness only. We compared health service utilization and changes in rates of hospitalizations over time using restricted cubic spline regression. Secondary outcome measures included change in hospital costs for each hospitalization category over the study period. RESULTS: Of 1,076,951 hospitalizations in young adults (73.7% female), 195,726 (18.2%) had a psychiatric disorder (either primary or comorbid). There were 129,676 hospitalizations (12.0%) with psychiatric disorders only, 36,287 (3.4%) with primary psychiatric and comorbid physical disorders, 29,763 (2.8%) with primary physical and comorbid psychiatric disorders, and 881,225 (81.8%) with physical disorders only. Rates of hospitalization for psychiatric disorders only increased 81% from 4.32 to 7.84/1,000 population, and those with physical health disorders with comorbid psychiatric disorders increased 172% from 0.47 to 1.28/1,000 population. Substance-related disorders were the most common comorbid psychiatric disorders among youth hospitalized for physical illness and increased 260% from 0.9 to 3.3/1,000 population. DISCUSSION: Hospitalizations among young adults with primary and comorbid psychiatric disorders have increased significantly over the past 15 years. Health system resources should be adequately directed to meet the shifting and complex needs of hospitalized young adults.

Association between physician characteristics and practice-level uptake of paediatric virtual mental healthcare: a population-based study.

OBJECTIVE: To examine physician factors associated with practice-level uptake of virtual mental healthcare for children and adolescents. DESIGN, SETTING AND PARTICIPANTS: A population-based data linkage study of a cohort of all physicians (n=12 054) providing outpatient mental healthcare to children and adolescents (aged 3-17 years, n=303 185) in a single-payer provincial health system in Ontario, Canada from 1 July 2020 to 31 July 2021. EXPOSURES: Physician characteristics including gender, age, specialty, location of training, practice region, practice size and overall and mental health practice size. MAIN OUTCOMES: Practice-level proportion of outpatient virtual care provided: (1) mostly in-person (<25% virtual care), (2) hybrid (25%-99% virtual care) or (3) exclusively virtual (100% virtual care). Multinomial logistic regression models tested the association between practice-level virtual care provided and physician characteristics. RESULTS: Among physicians, 1589 (13.2%) provided mostly in-person mental healthcare with 8714 (67.8%) providing hybrid care, and 2291 (19.0%) providing exclusively virtual care. The provision of exclusive virtual care (vs mostly in-person) was associated with female sex (adjusted OR (aOR) 1.97, 95% CI 1.70 to 2.27 (ref: male)), foreign training (aOR 1.27, 95% CI 1.07 to 1.50 (ref: Canadian-trained)), family physicians (aOR 2.05, 95% CI 1.56 to 2.69 (ref: psychiatrist)) and reversely associated with large practice size (aOR 0.32, 95% CI 0.25 to 0.40 (ref smallest quintile)). Mostly in-person care was associated with older age physicians (71+ years) and practice outside the Toronto region. CONCLUSIONS AND RELEVANCE: In a single-payer universal healthcare system that remunerates physicians using the same fee structure for in-person and virtual outpatient care, there is heterogeneity in utilisation of virtual care that is associated with provider factors. This practice variation, with limited evidence on effectiveness and appropriate contexts for virtual care use, suggests there may be opportunity for further outcomes research and guidance on appropriate context for paediatric virtual mental healthcare delivery.

Longitudinal Association Between Youth Multimorbidity and Psychological Distress: Impact of the COVID-19 Pandemic.

This research examined longitudinal associations between youth physical-mental multimorbidity and psychological distress before and during the COVID-19 pandemic; assessed the contextual impact of the pandemic on these associations; and, investigated potential moderating factors. The Multimorbidity in Youth across the Life-course, an ongoing study of youth aged 2-16 years (mean 9.4; 46.9% female) with physical illness, was used as the sampling frame for this COVID-19 sub-study, in which 147 parent-youth dyads participated. Psychological distress was measured using the Kessler-6 (K6). Multimorbidity was associated with higher pre-pandemic, but not with intra-pandemic distress. Disability moderated pre-pandemic distress-multimorbidity was associated with higher K6 among youth with high disability, but not among youth with low disability. Age moderated intra-pandemic distress-multimorbidity was associated with higher K6 in older youth, but not among younger youth.

Considerations for privacy and confidentiality in adolescent health care service delivery.

A hallmark of delivering quality adolescent health care services is the provision of confidential care. Key tenets when providing confidential care for adolescents include time alone with a health care provider, maintaining the privacy of health information, and securing informed consent for services without permission from a parent, guardian, or caregiver. While confidentiality is a basic principle for all health care encounters regardless of age, the unique considerations for capable adolescent patients are not always realized or appreciated. By ensuring appropriate quantity and quality of confidential care for adolescents, clinicians are better equipped to elicit a comprehensive history and physical examination, while empowering the adolescent involved to develop agency, autonomy, trust, and responsibility for their own health care decision-making and management.

Sociodemographic Differences in Physician-Based Mental Health and Virtual Care Utilization and Uptake of Virtual Care Among Children and Adolescents During the COVID-19 Pandemic in Ontario, Canada: A Population-Based Study.

OBJECTIVE: We sought to evaluate the relationship between social determinants of health and physician-based mental healthcare utilization and virtual care use among children and adolescents in Ontario, Canada, during the COVID-19 pandemic. METHODS: This population-based repeated cross-sectional study of children and adolescents (3-17 years; N = 2.5 million) used linked health and demographic administrative data in Ontario, Canada (2017-2021). Multivariable Poisson regressions with generalized estimating equations compared rates of outpatient physician-based mental healthcare use during the first year of the COVID-19 pandemic with expected rates based on pre-COVID patterns. Analyses were conducted by socioeconomic status (material deprivation quintiles of the Ontario Marginalization index), urban/rural region of residence, and immigration status. RESULTS: Overall, pediatric physician-based mental healthcare visits were 5% lower than expected (rate ratio [RR] = 0.95, 95% confidence interval [CI], 0.92 to 0.98) among those living in the most deprived areas in the first year of the pandemic, compared with the least deprived with 4% higher than expected rates (RR = 1.04, 95% CI, 1.02 to 1.06). There were no differences in overall observed and expected visit rates by region of residence. Immigrants had 14% to 26% higher visit rates compared with expected from July 2020 to February 2021, whereas refugees had similarly observed and expected rates. Virtual care use was approximately 65% among refugees, compared with 70% for all strata. CONCLUSION: During the first year of the pandemic, pediatric physician-based mental healthcare utilization was higher among immigrants and lower than expected among those with lower socioeconomic status. Refugees had the lowest use of virtual care. Further work is needed to understand whether these differences reflect issues in access to care or the need to help inform ongoing pandemic recovery planning.

"I Have Eight Different Files at Eight Different Places": Perspectives of Youths and Their Family Caregivers on Transitioning from Pediatric to Adult Rehabilitation and Community Services.

INTRODUCTION: The number of young adults (youth) living with childhood-onset disabilities, and requiring transitional support to adult community and rehabilitation services, is increasing. We explored facilitators and barriers to accessing and sustaining community and rehabilitation services during the transition from pediatric to adult care. METHODS: A qualitative descriptive study was conducted in Ontario, Canada. Data were collected through interviews with youth (n = 11) and family caregivers (n = 7). The data were coded and analyzed using thematic analysis. RESULTS: Youth and caregivers face many types of transitions from pediatric to adult community and rehabilitation services, e.g., those related to education, living arrangements, and employment. This transition is marked by feelings of isolation. Supportive social networks, continuity of care (i.e., same care providers), and advocacy all contribute to positive experiences. Lack of knowledge about resources, changing parental involvement without preparation, and a lack of system responses to evolving needs were barriers to positive transitions. Financial circumstances were described as either a barrier or facilitator to service access. CONCLUSIONS: This study demonstrated that continuity of care, support from providers, and social networks all contribute markedly to the positive experience of transitioning from pediatric to adult services for individuals with childhood-onset disabilities and family caregivers. Future transitional interventions should incorporate these considerations.

A call for action: Recommendations to improve transition to adult care for youth with complex health care needs.

Youth with complex health care needs, defined as those requiring specialized health care and services for physical, developmental, and/or mental health conditions, are often cared for by paediatricians and paediatric specialists. In Canada, the age at which provincial/territorial funders mandate the transfer of paediatric care to adult services varies, ranging between 16 and 19 years. The current configuration of distinct paediatric and adult care service boundaries is fragmentary, raising barriers to continuity of care during an already vulnerable developmental period. For youth, the lack of care integration across sectors can negatively impact health engagement and jeopardize health outcomes into adulthood. To address these barriers and improve transition outcomes, paediatric and adult care providers, as well as family physicians and other community partners, must collaborate in meaningful ways to develop system-based strategies that streamline and safeguard care for youth transitioning to adult services across tertiary, community, and primary care settings. Flexible age cut-offs for transfer to adult care are recommended, along with considering each youth's developmental stage and capacity as well as patient and family needs and circumstances. Specialized training and education in transitional care issues are needed to build capacity and ensure that health care providers across diverse disciplines and settings are better equipped to accept and care for young people with complex health care needs.

Appel à l'action : des recommandations pour améliorer la transition des jeunes ayant des besoins de santé complexes vers les soins aux adultes.

Les jeunes qui ont des besoins de santé complexes, définis comme ceux qui nécessitent des soins et services spécialisés en raison d'affections physiques, développementales ou mentales, sont souvent traités par des pédiatres et autres spécialistes en pédiatrie. Au Canada, l'âge auquel les bailleurs de fonds provinciaux et territoriaux exigent le transfert des soins pédiatriques aux soins pour adultes varie entre 16 et 19 ans. La délimitation actuelle entre les services de santé pédiatriques et aux adultes est fragmentaire, ce qui entrave la continuité des soins pendant une période déjà vulnérable du développement. Le peu d'intégration des soins entre les domaines peut nuire à l'engagement des jeunes en matière de santé et compromettre leur santé à l'âge adulte. Pour renverser ces obstacles et améliorer les résultats de la transition, les dispensateurs de soins pédiatriques et de soins aux adultes, de même que les médecins de famille et d'autres partenaires communautaires, doivent collaborer de manière satisfaisante à l'élaboration de stratégies systémiques qui rationalisent et préservent les soins aux jeunes en transition vers des soins aux adultes en milieu tertiaire, communautaire et primaire. Il est recommandé de privilégier des limites d'âge flexibles pour effectuer cette transition vers les soins aux adultes et de tenir compte de la phase de développement et de l'aptitude de chaque jeune, ainsi que des besoins et de la situation de chaque patient et de chaque famille. Une formation et un enseignement spécialisés sur les enjeux liés aux soins de transition s'imposent pour renforcer les capacités et s'assurer que les professionnels de la santé des diverses disciplines et des divers milieux soient mieux outillés pour accepter et traiter les jeunes qui ont des besoins de santé complexes.

Quality Indicators for Youth Transitioning to Adult Care: A Systematic Review.

BACKGROUND AND OBJECTIVE: Transition from pediatric to adult care is associated with adverse health outcomes for many adolescents with chronic illness. We identified quality indicators for transition to adult care that are broadly applicable across chronic illnesses and health systems. METHODS: Medline, Embase, and the Cumulative Index to Nursing and Allied Health Literature were searched, covering earliest available date to July 2021. The Gray Matters framework was used to search gray literature. Two independent reviewers screened articles by title and abstract, followed by full-text review. Disagreements were resolved by a third reviewer. Studies were included that identified quality indicators developed via consensus-building methods. Indicators were organized into a framework categorized by illness specificity, level of care, Donabedian model, and Institute of Medicine quality domain. Appraisal of Guidelines for Research and Evaluation tool was used for critical appraisal. RESULTS: The search identified 4581 articles, of which 321 underwent full-text review. Eight peer-reviewed studies and 1 clinical guideline were included, identifying 169 quality indicators for transition. Of these, 56% were illness specific, 43% were at the patient level of care, 44% related to transition processes, and 51% were patient centered and 0% equity focused. Common indicator themes included education (12%), continuity of care (8%), satisfaction (8%), and self-management/self-efficacy (7%). The study was limited by quality indicators developed through consensus-building methodology. CONCLUSIONS: Although most quality indicators for transition were patient-centered outcomes, few were informed by youth and parents/caregivers, and none focused on equity. Further work is needed to prioritize quality indicators across chronic illness populations while engaging youth and parents/caregivers in the process.