Health services use among children diagnosed with medium-chain acyl-CoA dehydrogenase deficiency through newborn screening: A cohort study in Ontario, Canada

Background: We describe early health services utilization for children diagnosed with medium-chain acyl-CoA dehydrogenase (MCAD) deficiency through newborn screening in Ontario, Canada, relative to a screen negative comparison cohort. Methods: Eligible children were identified via newborn screening between April 1, 2006 and March 31, 2010. Age-stratified rates of physician encounters, emergency department (ED) visits and inpatient hospitalizations to March 31, 2012 were compared using incidence rate ratios (IRR) and incidence rate differences (IRD). We used negative binomial regression to adjust IRRs for sex, gestational age, birth weight, socioeconomic status and rural/urban residence. Results: Throughout the first few years of life, children with MCAD deficiency (n = 40) experienced statistically significantly higher rates of physician encounters, ED visits, and hospital stays compared with the screen negative cohort. The highest rates of ED visits and hospitalizations in the MCAD deficiency cohort occurred from 6 months to 2 years of age (ED use: 2.1-2.5 visits per child per year; hospitalization: 0.5-0.6 visits per child per year), after which rates gradually declined. Conclusions: This study confirms that young children with MCAD deficiency use health services more frequently than the general population throughout the first few years of life. Rates of service use in this population gradually diminish after 24 months of age

Mental Health Matters: Limited Support Remains a Barrier to Optimal Care for Youth With Diabetes

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Toward the Goal of Understanding and Tackling the Social Determinants of Diabetes.

Diabetes cannot be understood purely by research into biological and lifestyle factors. Significant social determinants of health (SDOH), such as income, employment and housing, play a critical role yet remain under-studied. Indigenous, racialized, LGBTQ2S+ and low-income communities are disproportionately impacted by diabetes. These inequalities are shaped by the distribution of money, power and resources, and were propelled to the fore during the COVID-19 pandemic. Understanding and mitigating the impact of social determinants of diabetes are urgent priorities given the prevalence and economic cost of the disease. This special issue, the first of its kind for the Canadian Journal of Diabetes, brings together multifaceted research on the profound social determinants that affect people living with type 1 and type 2 diabetes. This is a crucial step toward understanding and tackling disparities in diabetes research, care and policy.</p

Adaptation of an Adult Web Application for Type 1 Diabetes Self-management to Youth Using the Behavior Change Wheel to Tailor the Needs of Health Care Transition: Qualitative Interview Study

BackgroundYouth (aged 14-24 years) living with type 1 diabetes (T1D) encounter increased challenges in their diabetes self-management (DSM), especially during the transition to adult care. Although DSM education and support are imperative, there is insufficient information on how web-based digital tools tailored to their demands can be developed. ObjectiveOn the basis of the Behavior Change Wheel, this study aims to identify, among youth living with T1D, the needs and factors influencing their DSM in the context of health care transition and to inform the adaptation (content and features) of an adult self-guided web application (Support). MethodsInternet-based semistructured individual interviews based on a phenomenological study design were conducted with 21 youths, and transcripts were analyzed using an inductive approach with concept mapping. ResultsFactors influencing T1D self-management were categorized into barriers and facilitators and then as external or internal. Features influencing the accessibility to information, increasing the sense of support, and use of the tool were positively accepted. Features unrelated to their expectations of digital tool use or difficulty navigating were viewed negatively. Participants expressed an interest in reliable, practical, and novel educational content. Although youth considered the information provided by medical professionals to be important, peer exchange was deemed necessary to obtain a practical perspective and real-life examples. ConclusionsCompared with the adult population, in addition to tailored content and a simplified information search process, when building a DSM education and support digital tool for youth, features should be selected to encourage supervised peer exchange

Qualitative study exploring the perspectives of emerging adults with type 1 diabetes after transfer to adult care from a paediatric diabetes centre in Montreal, Canada

Introduction Among youth living with type 1 diabetes (T1D), the increasing demands to diabetes self-care and medical follow-up during the transition from paediatric to adult care has been associated with greater morbidity and mortality. Inadequate healthcare support for youth during the transition care period could exacerbate psychosocial risks and difficulties that are common during emerging adulthood. The current investigation sought to explore the post-transfer perceptions of emerging adults living with T1D relating to their transition to adult care.Research design and methods Thirty-three emerging adults living with T1D were recruited during paediatric care and contacted for a semistructured interview post-transfer to adult care (16.2±4.2 months post-transfer) in Montreal, Canada. We analysed data using thematic analysis.Results We identified four key themes: (1) varied perceptions of the transition process from being quick and abrupt with minimal advice or information from paediatric healthcare providers (HCP) to more positive including a greater motivation for self-management and the transition being concurrent with the developmental period; (2) facilitators to the transition process included informational and tangible social support from HCPs and family or friends, a positive relationship with adult HCP and a greater ease in communicating with the adult care clinic or adult HCP; (3) barriers to adequate transition included lack of advice or information from paediatric HCPs, loss of support from HCPs and friends or family, the separation of healthcare services and greater difficulty in making appointments with adult clinic or HCP and (4) participants recommendations for improving the transition included increasing the length and frequency of appointments in adult care, having access to educational information, and better transition preparation from paediatric HCPs.Conclusions The experiences and perceptions of emerging adults are invaluable to guide the ongoing development and improvement of transition programmes for childhood-onset chronic illnesses

Text message-based intervention, Keeping in Touch (KiT), to support youth as they transition to adult type 1 diabetes care: a protocol for a multisite randomised controlled superiority trial

Introduction Transition from paediatric to adult care can be challenging for youth living with type 1 diabetes (T1D), as many youth feel unprepared to transfer to adult care and are at high risk for deterioration of glycaemic management and acute complications. Existing strategies to improve transition experience and outcomes are limited by cost, scalability, generalisability and youth engagement. Text messaging is an acceptable, accessible and cost-effective way of engaging youth. Together with adolescents and emerging adults and paediatric and adult T1D providers, we co-designed a text message-based intervention, Keeping in Touch (KiT), to deliver tailored transition support. Our primary objective is to test the effectiveness of KiT on diabetes self-efficacy in a randomised controlled trial.Methods and analysis We will randomise 183 adolescents with T1D aged 17–18 years within 4 months of their final paediatric diabetes visit to the intervention or usual care. KiT will deliver tailored T1D transition support via text messages over 12 months based on a transition readiness assessment. The primary outcome, self-efficacy for diabetes self-management, will be measured 12 months after enrolment. Secondary outcomes, measured at 6 and 12 months, include transition readiness, perceived T1D-related stigma, time between final paediatric and first adult diabetes visits, haemoglobin A1c, and other glycaemia measures (for continuous glucose monitor users), diabetes-related hospitalisations and emergency department visits and the cost of implementing the intervention. The analysis will be intention-to-treat comparing diabetes self-efficacy at 12 months between groups. A process evaluation will be conducted to identify elements of the intervention and individual-level factors influencing implementation and outcomes.Ethics and dissemination The study protocol version 7 July 2022 and accompanying documents were approved by Clinical Trials Ontario (Project ID: 3986) and the McGill University Health Centre (MP-37-2023-8823). Study findings will be presented at scientific conferences and in peer-reviewed publications.Trial registration number NCT05434754

Health services use among children diagnosed with medium-chain acyl-CoA dehydrogenase deficiency through newborn screening: a cohort study in Ontario, Canada

Background: We describe early health services utilization for children diagnosed with medium-chain acyl-CoA dehydrogenase (MCAD) deficiency through newborn screening in Ontario, Canada, relative to a screen negative comparison cohort. Methods: Eligible children were identified via newborn screening between April 1, 2006 and March 31, 2010. Age-stratified rates of physician encounters, emergency department (ED) visits and inpatient hospitalizations to March 31, 2012 were compared using incidence rate ratios (IRR) and incidence rate differences (IRD). We used negative binomial regression to adjust IRRs for sex, gestational age, birth weight, socioeconomic status and rural/urban residence. Results: Throughout the first few years of life, children with MCAD deficiency (n = 40) experienced statistically significantly higher rates of physician encounters, ED visits, and hospital stays compared with the screen negative cohort. The highest rates of ED visits and hospitalizations in the MCAD deficiency cohort occurred from 6 months to 2 years of age (ED use: 2.1–2.5 visits per child per year; hospitalization: 0.5–0.6 visits per child per year), after which rates gradually declined. Conclusions: This study confirms that young children with MCAD deficiency use health services more frequently than the general population throughout the first few years of life. Rates of service use in this population gradually diminish after 24 months of age.Medicine, Faculty ofNon UBCPathology and Laboratory Medicine, Department ofReviewedFacult