Implementation of the Mind Youth Questionnaire (MY-Q) for routine health-related quality of life screening of adolescents with type 1 diabetes in a large tertiary care center.

OBJECTIVES: Prevalence of diabetes distress and mental health comorbidities among adolescents with type 1 diabetes (T1D) is high. Despite recommendations for routine psychosocial risk assessment, there is little guidance for their implementation. This study aims to describe the implementation and baseline outcomes of the Mind Youth Questionnaire (MY-Q), a validated psychosocial screening tool for health-related quality of life (QoL) including mood, among adolescents living with T1D. METHODS: Adolescents aged 13-18 years completed the MY-Q from October 1, 2019-April 1, 2023. Baseline characteristics, MY-Q results including categories flagged positive (noting possible areas of concern), debrief duration, and frequency of social work or mental health referral were collected and analyzed using descriptive statistics. RESULTS: A total of 343 adolescents (mean age 15.3 years; 52 % female) completed a baseline MY-Q. Median overall MY-Q debrief time (IQR) was 10.0 min (6.0, 20.0). About 290 (84.5 %) adolescents had at least one of seven categories flagged, most commonly "Family" (61 %). About 30 % of adolescents had "Mood" flagged, and 2.9 % of adolescents were referred to mental health following debrief. CONCLUSIONS: Without the need for additional resources, implementation of the MY-Q in a pediatric tertiary care diabetes clinic successfully identified QoL issues and mental health concerns among adolescents with T1D.

Teaching Adolescents With Type 1 Diabetes Self-Compassion (TADS) to Reduce Diabetes Distress: Protocol for a Randomized Controlled Trial.

BACKGROUND: Adolescents living with type 1 diabetes (T1D) often experience diabetes distress (DD), a construct distinct from depression or anxiety that refers to the negative emotions that arise from living with and managing diabetes. Self-compassion, which involves being open to one's own suffering and treating oneself with the same care one would show to loved ones, is associated with better psychological and clinical outcomes among individuals with T1D. Self-compassion is a skill that can be taught and therefore represents an opportunity for intervention. OBJECTIVE: The overall aim of this study is to assess the effectiveness of a web-based mindful self-compassion for teens (MSC-T) intervention on improving DD, anxiety, depression, diabetes-related disordered eating, and suicidal ideation experienced by youth with T1D (aged between 12 and 17 years) compared with a waitlist control group (standard of care). We will also explore (1) if the effect of the MSC-T intervention changes over time, (2) if the MSC-T intervention has a positive impact on measures of glycemic control, and (3) if the effect of the MSC-T intervention differs based on self-reported gender. METHODS: We will conduct a single-center, parallel-group randomized controlled trial of 140 adolescents with T1D followed for 12 months. Participants will be randomly allocated (using hidden allocation) in a 1:1 ratio to either the MSC-T intervention or the waitlist control group. Our primary outcome is DD, as measured by the Problem Areas in Diabetes-Teen (PAID-T) version at 3 months. Secondary outcomes, assessed at 3 and 12 months, include anxiety (Generalized Anxiety Disorder 7-item [GAD-7] scale), depression (Patient Health Questionnaire-9 [PHQ-9]), diabetes-related disordered eating (Diabetes Eating Problem Survey-Revised [DEPS-R] version), and suicidal ideation (using 1 question from the PHQ-9). RESULTS: Study recruitment began in October 2022 and was completed in March 2023, with a total of 141 participants enrolling. Data collection will be ongoing until March 2024. The first results are expected in June 2024. CONCLUSIONS: This study will be the first randomized trial to assess the effectiveness of the web-based MSC-T intervention on adolescents with T1D. Given that adolescence is a period where individuals are typically required to assume more responsibility for their diabetes care, providing adolescents with the tools they need to better manage the stress that often accompanies T1D management is paramount. TRIAL REGISTRATION: ClinicalTrials.gov NCT05463874; https://clinicaltrials.gov/study/NCT05463874. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/53935.

A pediatric virtual care evaluation framework and its evolution using consensus methods.

BACKGROUND: The use of virtual care has increased dramatically in response to the COVID-19 pandemic, yet evidence is lacking regarding the impact of virtual care on patient outcomes, particularly in pediatrics. A standardized evaluation approach is required to support the integration of virtual care into pediatric health care delivery programs. The objective of this work was to develop a comprehensive and structured framework for pediatric virtual care evaluation. This framework is intended to engage and guide care providers, health centres, and stakeholders towards the development of a standardized approach to the evaluation of pediatric virtual care. METHODS: We brought together a diverse multidisciplinary team, including pediatric clinicians, researchers, digital health leads and analysts, program leaders, a human factors engineer, a family advisor and our manager of health equity and diversity. The team reviewed the literature, including published evaluation frameworks, and used a consensus-based method to develop a virtual care evaluation framework applicable to a broad spectrum of pediatric virtual care programs. We used an iterative process to develop framework components, including domains and sub-domains, examples of evaluation questions, measures, and data sources. Team members met repeatedly over seven months to generate and provide feedback on all components of the framework, making revision as needed until consensus was reached. The framework was then applied to an existing virtual care program. RESULTS: The resulting framework includes four domains (health outcomes, health delivery, individual experience, and program implementation) and 19 sub-domains designed to support the development and evaluation of pediatric virtual care programs. We also developed guidance on how to use the framework and illustrate its utility by applying it to an existing pediatric virtual care program. CONCLUSIONS: This virtual care evaluation framework expands on previously developed frameworks by providing additional detail and a structure that supports practical application. It can be used to evaluate a wide range of pediatric virtual care programs in a standardized manner. Use of this comprehensive yet easy to use evaluation framework will inform appropriate implementation and integration of virtual care into routine practice and support its sustainability and continuous improvement.

Implementation and evaluation of a longitudinal diabetes educational programme for adolescents.

INTRODUCTION: International guidelines recommend structured and continuous educational programmes to expand diabetes knowledge and self-efficacy in youth. To address these recommendations within a paediatric diabetes clinic, we conducted a three-phase quality improvement project aimed at improving adolescents' confidence in diabetes self-management skills. METHODS: In phase 1, the Diabetes Learning Centre (DLC), an educational programme for adolescents with type 1 diabetes (T1D) ages 13-17 years, was developed and implemented. Programme feasibility was evaluated through programme attendance rates. Phase 2 aimed to guide ongoing programme development and optimisation. DLC attendees rated their baseline confidence in overall and individual T1D self-management skills on a 5-point Likert scale. Patient characteristics were summarised using descriptive statistics and the association between patient characteristics and overall confidence in T1D self-management was evaluated. Phase 3 used patient surveys to evaluate patient satisfaction and reported change in confidence in self-management skills following DLC attendance. RESULTS: In phase 1, 232 (81%) of eligible adolescents attended the DLC during the study period. In phase 2, median overall confidence in diabetes management on a Likert scale (0-4) was 3, representing 'quite confident', although confidence was low in some essential self-management skills. Higher confidence was associated with lower HbA1c (p<0.001). In phase 3, 77 (85%) of participants reported high levels of satisfaction with the DLC. 106 (82%) of completed worksheets were associated with improved confidence in the diabetes self-management skill addressed. CONCLUSIONS: Implementation of a longitudinal T1D educational model was feasible with good uptake in an existing T1D programme. While confidence at baseline was quite high for overall T1D self-management, it was low in some essential self-management skills, highlighting the need for this programme and specific educational gaps. Adolescents reported improvements in confidence and high levels of satisfaction following DLC attendance. Our model provides a replicable programme template to address longitudinal education needs.

Social Determinants of Health Associated With Patient Portal Use in Pediatric Diabetes.

OBJECTIVES: Social determinants of health (SDOH) are associated with type 1 diabetes (T1D) outcomes. Patient portal (PP) use can improve care quality. Therefore, equitable PP access is essential. Associations between SDOH and PP access have not been reported in pediatric T1D. The purpose of this study was to determine whether PP access and use are associated with SDOH in pediatric T1D. METHODS: This work was a cross-sectional study of patients <18 years of age with T1D who were seen in a diabetes clinic at a tertiary care centre between April 1, 2020, and March 31, 2021. Patient postal code, PP activation status and use, and characteristics were collected from electronic health records on April 1, 2021. SDOH were assessed using patient postal code linked to the Ontario Marginalization Index (ON-Marg) to determine quintile score across 4 dimensions of deprivation. Statistical analysis tested for an association between PP activation status and ON-Marg quintile. RESULTS: Data were obtained for 634 patients with a mean age of 12.8±3.8 years; 53% were male and mean glycated hemoglobin was 8.4±2.0%. In the last year, 334 patients (53%) were PP active and 332 (52%) used the PP. The odds of inactive PP status were higher for those with the highest degree of material deprivation (odds ratio [OR], 2.91; 95% confidence interval [CI], 1.62 to 5.36) and residential instability (OR, 3.49; 95% CI, 1.86 to 6.70). PP activation status was not associated with dependency or ethnic concentration. CONCLUSIONS: In our pediatric T1D population, inactive PP status is associated with greater material deprivation and residential instability. How these factors impact PP activation and how to improve equitable access requires further study.

A 79-kb paternally inherited 7q32.2 microdeletion involving MEST in a patient with a Silver-Russell syndrome-like phenotype.

Maternal uniparental disomy of human chromosome 7 [upd(7)mat] is well-characterized as a cause of the growth disorder Silver-Russell syndrome (SRS). However, the causative gene is not currently known. There is growing evidence that molecular changes at the imprinted MEST region in 7q32.2 are associated with a phenotype evocative of SRS. This report details a patient with a SRS-like phenotype and a paternally inherited microdeletion of 79 kilobases (35-fold smaller than the previously reported smallest deletion) in the 7q32.2 region. This microdeletion encompasses only five genes, including MEST, which corroborates the hypothesis that MEST plays a central role in the 7q32.2 microdeletion growth disorder, as well as further implicating MEST in upd(7)mat SRS itself.

CYP24A1 and SLC34A1 Pathogenic Variants Are Uncommon in a Canadian Cohort of Children with Hypercalcemia or Hypercalciuria.

OBJECTIVES: Biallelic pathogenic variants in CYPA24A1 and SLC34A1 are causes of idiopathic infantile hypercalcemia. Pathogenic variants in both may also give rise to hypercalciuria with nephrocalcinosis or nephrolithiasis without previous hypercalcemia (renal group). Our objective was to examine the frequency of CYP24A1 or SLC34A1 variants in children with early hypercalcemia or late-onset hypercalciuria. METHOD: Forty-one children from 7 centers across Canada were recruited. Local investigations were undertaken. The serum was evaluated by liquid chromatography tandem-mass spectrometry for the ratio of 25-hydroxyvitamin D3 to 24,25-dihydroxyvitamin D3, (25-OH-D3:24,25-(OH)2D3), an elevation pathognomonic for the loss of function of the CYP24A1 enzyme. Mutational analyses were undertaken. Family cascade screening was performed if pathogenic variants were detected in probands. RESULTS: Twenty-nine children had early-onset hypercalcemia; none had elevated 25-OH-D3:24,25-(OH)2D3 or variants. Interestingly, 2 of 12 in the renal group had elevated 25-OH-D3:24,25-(OH)2D3 and presented as preadolescents. In case 1, cascade testing revealed a sibling and parent with asymptomatic pathogenic variants in CYP24A1. Four CYP24A1 pathogenic variants were identified in these 2 probands: 3 have been described in European populations, and 1 is a rare variant in exon 7 (c931delC) that is likely pathogenic. No SLC34A1 pathogenic variants were detected. CONCLUSION: In Canada, pathogenic variants in CYP24A1 appear to manifest with late-onset hypercalciuria and its sequelae. The 25-OH-D3:24,25-(OH)2D3 ratio is an excellent tool for screening for biallelic pathogenic variants in CYP24A1. We confirm that cascade testing is important for these variants.

Screening and Treatment Outcomes in Adults and Children With Type 1 Diabetes and Asymptomatic Celiac Disease: The CD-DIET Study.

OBJECTIVE: To describe celiac disease (CD) screening rates and glycemic outcomes of a gluten-free diet (GFD) in patients with type 1 diabetes who are asymptomatic for CD. RESEARCH DESIGN AND METHODS: Asymptomatic patients (8-45 years) were screened for CD. Biopsy-confirmed CD participants were randomized to GFD or gluten-containing diet (GCD) to assess changes in HbA1c and continuous glucose monitoring over 12 months. RESULTS: Adults had higher CD-seropositivity rates than children (6.8% [95% CI 4.9-8.2%, N = 1,298] vs. 4.7% [95% CI 3.4-5.9%, N = 1,089], P = 0.035) with lower rates of prior CD screening (6.9% vs. 44.2%, P < 0.0001). Fifty-one participants were randomized to a GFD (N = 27) or GCD (N = 24). No HbA1c differences were seen between the groups (+0.14%, 1.5 mmol/mol; 95% CI -0.79 to 1.08; P = 0.76), although greater postprandial glucose increases (4-h +1.5 mmol/L; 95% CI 0.4-2.7; P = 0.014) emerged with a GFD. CONCLUSIONS: CD is frequently observed in asymptomatic patients with type 1 diabetes, and clinical vigilance is warranted with initiation of a GFD.

Where Have the Periods Gone? The Evaluation and Management of Functional Hypothalamic Amenorrhea

Functional hypothalamic amenorrhea (FHA) is a common cause of amenorrhea in adolescent girls. It is often seen in the setting of stress, weight loss, or excessive exercise. FHA is a diagnosis of exclusion. Patients with primary or secondary amenorrhea should be evaluated for other causes of amenorrhea before a diagnosis of FHA can be made. The evaluation typically consists of a thorough history and physical examination as well as endocrinological and radiological investigations. FHA, if prolonged, can have significant impacts on metabolic, bone, cardiovascular, mental, and reproductive health. Management often involves a multidisciplinary approach, with a focus on lifestyle modification. Depending on the severity, pharmacologic therapy may also be considered. The aim of this paper is to present a review on the pathophysiology, clinical findings, diagnosis, and management approaches of FHA in adolescent girls.

Caregiving for children with type 1 diabetes and clinical outcomes in central India: The IDREAM study.

AIMS: Parental care influences outcomes for children's type 1 diabetes (T1D). There is little evidence about the impact of parental caregiving in developing countries, where fixed dose human insulin (conventional) therapy and limited self-monitoring of blood glucose are common. This article investigates whether performance of key T1D management tasks by children or their caregivers impacts hemoglobin A1c (HbA1c). METHODS: We surveyed the caregivers of 179 children with T1D routinely treated in a specialized diabetes clinic in Maharashtra, India to determine who performs key diabetes care tasks: child or parent. We used linear regression to estimate the relationship between parental caregiving and HbA1c, and how this association varies by child age and time since diagnosis. RESULTS: Caregivers of older children were less involved in care tasks, though caregivers of 11- to 18-year olds performed more care for children diagnosed for a longer duration. Parental involvement in key insulin delivery tasks was associated with lower HbA1c levels for all children. These reductions were greatest among children 11 to 14 years old and diagnosed for less than 2 years: mean HbA1c levels were 8.5% (69 mmol/mol) if the caregiver, and 14.4% (134 mmol/mol) if the child, performed the tasks (P < .05). CONCLUSION: Parents of children diagnosed with T1D early in life remain involved in care throughout the child's adolescence. Parents of children diagnosed in late childhood and early adolescence are significantly less involved in care, and this is associated with worse glycemic control. Clinics must know who performs care tasks and tailor diabetes education appropriately.

Mental health and well-being among type 1 diabetes caregivers in India: Evidence from the IDREAM study.

AIMS: Although more than half of the world's children with T1D live in developing countries, still little is known about how caregiving for children with T1D affects the parent/caregivers' health in low- and middle-income country settings. METHODS: Caregivers of 178 children with T1D from a specialized diabetes clinic in Maharashtra, India were surveyed. Ordered and standard logistic regression models adjusted for caregiver, household and child characteristics, were fit to estimate the association of caregiving burden (objective caregiving burden and subjective caregiving burden (Zarit Burden Inventory - tertiles)) with caregiver depression (Patient Health Questionnaire [PHQ-9]) and well-being (CDC Unhealthy Days) outcomes. RESULTS: Caregivers with high subjective caregiving burden had a 41% probability of most severe depression category (probability: 0.41, 95% CI: 0.25, 0.57) and an 39% probability of low well-being (probability: 0.39, 95% CI: 0.27, 0.51), compared to caregivers with low subjective burden. Caregivers with high subjective caregiving burden and high objective direct caregiving burden had an adjusted 30% probability of elevated depressive symptoms (PHQ≥10). CONCLUSIONS: Among Indian T1D caregivers, high subjective caregiving burden and objective direct caregiving burden were associated with a high risk for caregiver depression and poorer well-being.

Social determinants of health on glycemic control in pediatric type 1 diabetes.

OBJECTIVE: To evaluate the relationship between the social determinants of health (SDH) and glycemic control in a large pediatric type 1 diabetes (T1D) population. STUDY DESIGN: Deprivation Indices (DI) were used to ascertain population-level measures of socioeconomic status, family structure, and ethnicity in patients with T1D followed at The Hospital for Sick Children August 2010-2011 (n = 854). DI quintile scores were determined for individual patients based on de-identified postal codes, and linked to mean patient A1Cs as a measure of glycemic control. We compared mean A1C between the most and least deprived DI quintiles. Associations were estimated controlling for age and sex, and repeated for insulin pump use. RESULTS: The T1D population evaluated in this study was most concentrated in the least and most deprived quintiles of the Material DI. A1C levels were highest in patients with the greatest degree of deprivation (fifth vs first quintile) on the Material DI (9.2% vs 8.3%, P < .0001), Social DI (9.1% vs 8.3%, P < .0001), and Ethnic Concentration Index (8.9% vs 8.4%, P = .03). These relationships between measures of the SDH and A1C were not evident for patients on insulin pumps. On regression analysis, higher A1C was predicted by older age, female sex, not using pump therapy, and being in the most deprived quintile for Material and Social Deprivation, but not Ethnic Concentration. CONCLUSIONS: Measures of the SDH comprising Material and Social Deprivation were significantly associated with suboptimal glycemic control in our pediatric T1D cohort. Use of insulin pump therapy also predicted A1C and may have a moderating effect on these relationships.

Detection of hypertension and prehypertension in paediatric patients with type 1 diabetes using a simple blood pressure table.

BACKGROUND: The diagnosis of hypertension is often unrecognized in the general paediatric and type 1 diabetes populations. Reference to a simple blood pressure table has been proposed as a screening tool for the identification of abnormal paediatric blood pressure. This simple table lists one cut-off blood pressure value for each sex and year of age, compared with the standard blood pressure tables, which list 476 abnormal and normal blood pressure values. OBJECTIVE: To determine the sensitivity and specificity of the simple blood pressure table in identifying hypertensive and abnormal (hypertensive or prehypertensive) blood pressure values in children with type 1 diabetes. METHODS: A retrospective cohort study was conducted. Data regarding baseline characteristics and blood pressure measurements were collected. Blood pressure values were categorized as nonhypertensive, prehypertensive or hypertensive using the standard and simple blood pressure tables. Sensitivity and specificity of the simple blood pressure table was determined for the identification of hypertensive and abnormal (hypertensive or prehypertensive) blood pressure values using a generalized estimating equation approach. RESULTS: The simple blood pressure table had sensitivities of 100% (95% CI 95.7% to 100%) and 100% (95% CI 97.6% to 100%), and specificities of 61.1% (95% CI 54.0% to 67.8%) and 81.3% (95% CI 74.4% to 86.6%), for the identification of hypertensive and abnormal blood pressure values, respectively. CONCLUSION: The simple blood pressure table is an effective screening tool that may enable earlier detection and timely treatment of abnormal blood pressure.

HISTORIQUE: Le diagnostic d'hypertension demeure souvent non diagnostiqué dans les populations générale et atteinte du diabète de type 1 d'âge pédiatrique. On a proposé d'utiliser un tableau simplifié de la tension artérielle comme outil de dépistage d'une tension artérielle anormale en pédiatrie. Ce tableau simplifié indique une valeur seuil de tension artérielle selon le sexe et l'âge, par rapport aux tableaux de tension artérielle standards, qui contiennent 476 valeurs de tension artérielle anormales et normales. OBJECTIF: Déterminer la sensibilité et la spécificité du tableau simplifié de la tension artérielle pour déterminer les valeurs hypertensives et anormales (hypertension et préhypertension) de la tension artérielle chez des enfants atteints du diabète de type 1. MÉTHODOLOGIE: Les chercheurs ont mené une étude rétrospective de cohorte. Ils ont amassé des données relatives aux caractéristiques et aux mesures de tension artérielle de base. Ils ont classé les valeurs de tension artérielle entre non hypertensives, préhypertensives ou hypertensives au moyen des tableaux de la tension artérielle standard et simplifié. Ils ont déterminé la sensibilité et la spécificité du tableau simplifié de la tension artérielle pour déterminer les valeurs hypertensives et anormales (hypertension ou préhypertension) de la tension artérielle au moyen d'une approche d'équations d'estimation généralisées. RÉSULTATS: Le tableau simplifié de la tension artérielle présente une sensibilité de 100 % (95 % IC 95,7 % à 100 %) et de 100 % (95 % IC 97,6 % à 100 %), et une spécificité de 61,1 % (95 % IC 54,0 % à 67,8 %) et de 81,3 % (95 % IC 74,4 % à 86,6 %) pour déterminer des valeurs de tension artérielle hypertensives et anormales, respectivement. CONCLUSION: Le tableau simplifié de la tension artérielle est un outil de dépistage efficace qui peut favoriser un dépistage plus rapide et un traitement opportun de la tension artérielle anormale.