Diabetes duration, perceived comfort with self-management and glycaemic control in adolescents with type 1 diabetes: A cross-sectional study.

AIMS: Evidence is lacking on whether diabetes duration is associated with type 1 diabetes (T1D) self-management during late adolescence before transfer from paediatric to adult care. We examined associations of diabetes duration with dimensions of perceived comfort with diabetes self-management (self-efficacy, transition readiness, diabetes distress) and glycaemic control in late adolescence. METHODS: Using a cross-sectional design, we conducted a secondary analysis of baseline data of adolescents (ages 16-17 years) with T1D followed at paediatric diabetes academic hospitals in Montreal and enrolled in the Group Education Trial to Improve Transition (GET-IT-T1D). Participants completed validated questionnaires on self-efficacy (Self-Efficacy for Diabetes Self-Management Measure [SEDM], score 1 to 10), diabetes distress and transition readiness, as well as a haemoglobin (HbA1c) capillary blood test. Our primary outcome was self-efficacy. We examined associations of diabetes duration with self-efficacy, diabetes distress, transition readiness and HbA1c using linear and logistic regression models adjusted for sex, socioeconomic status, insulin pump use, glucose sensor use and psychiatric comorbidity. RESULTS: Of 203 adolescents with T1D, mean diabetes duration (SD) was 7.57 (4.44) years. Mean SEDM score was 6.83 (SD 1.62). Diabetes duration was not associated with self-efficacy, diabetes distress or transition readiness. Each additional year of diabetes duration was associated with 0.11% (95% CI, 0.05 to 0.16) higher HbA1c. CONCLUSIONS: Although diabetes duration is not associated with dimensions of perceived comfort with diabetes self-management, adolescents with longer diabetes duration are at risk for higher HbA1c and may need additional support to improve glycaemic control before transition to adult care.

Adaptation and validation of the Genetic Counseling Outcome Scale for autism spectrum disorders and related conditions.

The genetics care pathway experienced by families affected by autism spectrum disorder (ASD) around the time of diagnosis is currently uncharacterized and potentially variable across contexts. The lack of consensus on outcome measures to capture the impact of genetic services for these families shows a gap in understanding and optimizing this genetics care pathway. The Genetic Counseling Outcome Scale (GCOS-24) is a validated outcome measure of clinical genetics services. The current study aims to adapt and validate the GCOS-24 as an outcome measure in the context routine genetic testing in ASD and related conditions. Families seen for their child's developmental evaluation for ASD and related conditions were invited to participate in a genomics cohort between 2016 and 2018. Families (n = 111) completed the mGCOS-24 (modified GCOS-24), adapted from the original GCOS-24 by clinicians working in the target population's routine care pathway. The mGCOS-24 has acceptable internal consistency (Cronbach's α = 0.84) and high test-retest reliability (ICC = 0.88). It also inversely correlates with stress as measured by Perceived Stress Scale (PSS-10) and distress, as measured by the Distress Thermometer, rs ≥ 0.39, ps < 0.001. The mGCOS-24 had adequate readability, as supported by cognitive interviews completed by a sub-sample of five mothers of a child with ASD. Together, our findings show that the mGCOS-24 has good validity for the target population. Preliminary characterization of the genetics care pathway in this population revealed remarkable variability in pre-test counseling and limited post-test counseling. The use of the mGCOS-24 as an outcome measure is useful in filling some of these gaps by offering a way to assess, and in the future, optimize the genetics care pathway for families affected by autism and related neurodevelopmental conditions.

Associations of Diabetes-related and Health-related Quality of Life With Glycemic Levels in Adolescents With Type 1 Diabetes Preparing to Transition to Adult Care.

OBJECTIVES: As adolescents with type 1 diabetes (T1D) progress to adulthood, they assume responsibility for diabetes self-management while dealing with competing life demands, decreasing parental support, and the transfer to adult care. Lower perceived quality of life (QOL) may hamper diabetes management, which is associated with suboptimal glycemic levels. Our objective was to determine associations of diabetes- and health-related QOL with glycemic management (glycated hemoglobin [A1C]) in adolescents with T1D before their transfer to adult care. METHODS: We conducted a cross-sectional analysis of baseline data from the Group Education Trial to Improve Transition (GET-IT- T1D) in adolescents with T1D (16 to 17 years of age). Participants completed validated questionnaires measuring diabetes-related QOL (PedsQL 3.2 Diabetes Module) and health-related QOL (PedsQL 4.0 Generic Core Scales). Associations of QOL Total and subscale scores with A1C were assessed using linear regression models adjusted for sex, diabetes duration, socioeconomic status, insulin pump use, and mental health comorbidity. RESULTS: One hundred fifty-three adolescents with T1D were included (mean age, 16.5 [standard deviation, 0.3] years). Diabetes-related QOL Total scores (adjusted ß=-0.04; 95% confidence interval [CI], -0.05 to -0.02) as well as subscale scores for Diabetes Symptoms (adjusted ß=-0.02; 95% CI, -0.04 to -0.00) and Diabetes Management (adjusted ß=-0.04; 95% CI, -0.05 to -0.02) were inversely associated with A1C. Health-related QOL Total scores were not associated with A1C, but Psychosocial Health subscale scores were (adjusted ß=-0.01; 95% CI, -0.03 to -0.00). CONCLUSION: Our results suggest that strategies focussing on diabetes-related QOL and psychosocial health may help prepare adolescents for the increasing responsibility of diabetes self-care.

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.

Association of Self-Efficacy, Transition Readiness and Diabetes Distress With Glycemic Control in Adolescents With Type 1 Diabetes Preparing to Transition to Adult Care.

OBJECTIVES: Adolescence and emerging adulthood are associated with inadequate medical follow up, suboptimal glycemic control and higher risk for adverse outcomes. Our aim in this study was to determine whether self-efficacy, transition readiness or diabetes distress is associated with glycemic control (glycated hemoglobin [A1C]) among adolescents with type 1 diabetes (T1D) preparing to transition to adult care. METHODS: We conducted a cross-sectional study of adolescents (age 17 years) with T1D followed at the Montreal Children's Hospital Diabetes Clinic 1 year before transferring to adult care. Participants completed validated questionnaires on self-efficacy (Self-Efficacy for Diabetes Self-Management Measure [SEDM], score 1 to 10), transition readiness (Am I ON TRAC? For Adult Care questionnaire [TRAC], score ≥8 indicates readiness) and diabetes distress (Diabetes Distress Scale for Adults with Type 1 Diabetes [T1-DDS], score ≥3 indicates distress). The primary outcome was A1C (%) 1 year before transfer. We examined associations of self-efficacy, transition readiness and diabetes distress with A1C using multivariate linear and logistic regression models adjusted for sex, age at diagnosis and socioeconomic status. RESULTS: Of 74 adolescents with T1D (29 males, 39.1%), 27 (36.4%) had suboptimal glycemic control (A1C ≥9.0%). Less than half were transition-ready (TRAC questionnaire score ≥8) and 14% had diabetes distress (T1-DDS score ≥3). SEDM was not associated with A1C. Adolescents considered ready for transition were less likely to have suboptimal glycemic control (odds ratio, 0.30; 95% confidence interval, 0.09 to 0.99), whereas adolescents with diabetes distress were more likely to have suboptimal glycemic control (odds ratio, 6.24; 95% confidence interval, 1.06 to 36.75). CONCLUSIONS: Improving health-care transition within pediatric care should focus on both transition readiness and diabetes distress to help improve adolescents' glycemic control and prepare them for adult care.

Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing.

BACKGROUND: There is limited empirical data quantifying the utility of genetic testing for families of children with autism spectrum disorder (ASD) or related neurodevelopmental disorders (NDD). We assessed the utility of clinical chromosomal microarray analysis (CMA), defined by diagnostic yield and parental empowerment, in population-based sample of parents of affected children; and explored child, family, and health services factors predictive of empowerment. METHODS: Participants were families of children undergoing diagnostic assessments, between 2016 and 2019. Diagnostic yield of CMA in affected children was determined. Parental empowerment was measured through adapted version of the Genetics Counseling Outcome Scale-24. Parents completed questionnaires to capture child, family, and health service factors. RESULTS: The diagnostic yield of CMA was 2.8% for pathogenic variants. Parental empowerment was significantly correlated with family functioning and aspects of perceived family-centeredness of care. The model accounted for 49.8% of the variation in parental empowerment, F (10,37) = 3.67, p = 0.002. After accounting for other predictors, parental perception of the provision of general information remained significantly associated with empowerment. CONCLUSION: The informational needs of families play an important role in their empowerment during genetic testing. Meeting these needs and monitoring empowerment can aid genomic technologies integration in personalized healthcare for ASD/NDD.

Perceived utility of biological testing for autism spectrum disorder is associated with child and family functioning.

BACKGROUND: The clinical integration of chromosomal microarray testing promises improvements in diagnostic yields in Autism Spectrum Disorder (ASD). While the impact on clinical management is promising for some families, the utility perceived by families, including the majority for whom results are negative, is unclear. With next generation genomic sequencing technologies poised for integration, along with promising ASD biomarkers being developed, there is a need to understand the extent to which genomic and other biological testing would have utility for the target recipients of these tests and their families. The purpose of the present cross-sectional study was to examine the predictors of perceived utility of biological testing among parents of a child with ASD. METHODS: The Perceived Utility of Biotesting (PUB) Questionnaire was developed based on literature review and integrating family review. Following their child's diagnosis, families participating in an ongoing prospective study completed the PUB questionnaire along with self-reported measures of parent stress, child and family functioning, and family-centered care prior to undergoing genetic testing for both clinical and research purposes. RESULTS: Based on n = 85 families, psychometric properties of the Perceived Utility of Biotesting questionnaire suggest a reliable and valid instrument. A stepwise regression analysis reveals that lower levels of child emotional and behavioural functioning and higher levels of family functioning correlated with higher perceived utility for biological testing. LIMITATIONS: A main limitation in the study is the participation rate of 50 %, thus the possibility of self-selection bias cannot be ruled out. We also chose to assess perceived utility among parents rather than the individuals with ASD themselves: modifying the questionnaire to capture perceived utility from autistic individuals across the lifespan would prove essential in future studies. Finally, ongoing validation of the PUB by assessing the PUB's discriminant and convergent validity is still needed. CONCLUSIONS: We conclude that the utility of biological testing perceived by families whose child is undergoing genetic testing around ASD diagnosis depends on their unique child and family characteristics. This signifies that engaging families in biomarker discovery for improving the impact of research and care requires systematic input from a representative sample of families.

Group education for adolescents with type 1 diabetes during transition from paediatric to adult care: study protocol for a multisite, randomised controlled, superiority trial (GET-IT-T1D).

INTRODUCTION: Transition from paediatric to adult care is challenging for adolescents and emerging adults (ages 18 to 30 years) with type 1 diabetes (T1D). This transition is characterised by a deterioration in glycaemic control (haemoglobin A1c (HbA1c)), decreased clinical attendance, poor self-management and increased acute T1D-related complications. However, evidence to guide delivery of transition care is lacking. Given the effectiveness of group education in adult diabetes glycaemic control and improvements in qualitative measures in paediatric diabetes, group education is a potentially feasible and cost-effective alternative for the delivery of transition care. In emerging adults with T1D, we aim to assess the effectiveness of group education visits compared with usual care on HbA1c, T1D-related complications, psychosocial measures and cost-effectiveness after the transfer to adult care. METHODS AND ANALYSIS: In a multisite, assessor-blinded, randomised, two-arm, parallel-group, superiority trial, 212 adolescents with T1D (ages 17 years) are randomised to 12 months group education versus usual T1D care before transfer to adult care. Visits in the active arm consist of group education sessions followed by usual T1D care visits every 3 months. Primary outcome is change in HbA1c measured at 24 months. Secondary outcomes are delays in establishing adult diabetes care, T1D-related hospitalisations and emergency department visits, severe hypoglycaemia, stigma, self-efficacy, diabetes knowledge, transition readiness, diabetes distress, quality of life and cost-effectiveness at 12 and 24 months follow-up. Analysis will be by intention-to-treat. Change in HbA1c will be calculated and compared between arms using differences (95% CI), along with cost-effectiveness analysis. A similar approach will be conducted to examine between-arm differences in secondary outcomes. ETHICS AND DISSEMINATION: The study was approved by McGill University Health Centre Research Ethics Board (GET-IT/MP-37-2019-4434, version 'Final 1.0 from November 2018). Study results will be disseminated through peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT03703440.

Association between distress and knowledge among parents of autistic children.

Understanding the overall utility of biological testing for autism spectrum disorder (ASD) is essential for the development and integration of biomarkers into routine care. One measure related to the overall utility of biological testing is the knowledge that a person has about the condition he/she suffers from. However, a major gap towards understanding the role of knowledge in overall utility is the absence of studies that have assessed knowledge of autism along with its predictors within a representative sample of families within the context of routine care. The objective of this study was to measure knowledge of ASD among families within the routine care pathway for biological testing in ASD by examining the association between knowledge with potential correlates of knowledge namely sociodemographic factors, parental stress and distress, and time since diagnosis among parents whose child with ASD is undergoing clinical genetic testing. Parents of a child diagnosed with ASD (n = 85, Mage = 39.0, SD = 7.7) participating in an ongoing prospective genomics study completed the ASD Quiz prior to undergoing genetic testing for clinical and research purposes. Parents also completed self-reported measures of stress and distress. Parent stress and distress was each independently correlated with knowledge of ASD, rs ≥ 0.26, ps < 0.05. Stepwise regression analysis revealed a significant model accounting for 7.8% of the variance in knowledge, F (1, 82) = 8.02, p = 0.006. The only factor significantly associated with knowledge was parental distress, ß = 0.30, p = 0.006. Parental stress, time since diagnosis, and sociodemographic factors were not significant predictors in this model. We concluded that families require tailored support prior to undergoing genetic testing to address either knowledge gaps or high distress. Ongoing appraisal of the testing process among families of diverse backgrounds is essential in offering optimal care for families undergoing genetic testing.

Impulse oscillometry: reference values in children 100 to 150 cm in height and 3 to 10 years of age.

OBJECTIVES: To generate reference equations in North American children to be used for assessing respiratory function through the forced oscillation (Rfo) technique, and to determine the changes in oscillatory resistance, reactance, and resonant frequency (Fres) in relation to age, body height, and weight. DESIGN/SETTING: A prospective cross-sectional study performed on healthy children selected according to strict criteria of American Thoracic Society and European Respiratory Society recommendations. MEASUREMENTS: Triplicate measures were obtained of resistance and reactance at 5, 10, 15, 20, 25, and 35 Hz as well as Fres through the impulse oscillometer (MasterScreen IOS; Jaeger/Toennies; Höchberg, Germany). Two hundred twenty-two white children--normally distributed within the 3- to 10-year age range and 100 to 150 cm in height--were recruited in Montreal, Canada. We used regression analysis to generate multiple predictive equations separately per gender and frequency on age, height, and body weight. RESULTS: Stepwise multiple regression in both natural and logarithmic forms for height, weight, age, and gender showed that standing height was the only significant predictor for all variables. Minimal variability was noted in each subject among the triplicate measurements (p = 0.68 to 0.96). Coherence was > 0.9 at all oscillating frequencies except 5 Hz (< 0.72), with tendencies to lower values in young children. CONCLUSIONS: Resistance and Fres decrease by height, but also by age; and reactance increases. As opposed to our past experience with spirometry in compatible age groups, the Rfo technique was well accepted by preschool children.