Improving equity in diabetes technology use: Voices of youth and their parents.

AIMS: There are marked inequities in clinical outcomes and rates of diabetes technology use among youth with type 1 diabetes (T1D). The quantitative data from our mixed methods cohort study identified significant improvements in glycaemia and quality of life in participants. We aimed to use qualitative methods to provide further insight into our quantitative findings in the setting of underlying health disparities. METHODS: Fifteen publicly insured, insulin pump-naïve non-Hispanic Black youth aged 6-21 years with T1D and baseline haemoglobin A1c (HbA1c) ≥86 mmol/mol (10%) and their parents participated in a mixed methods cohort study. Semi-structured interviews were conducted separately with parents and youth after completion of 6 months of HCL use. Three topic areas were explored: (1) Experience using HCL, (2) barriers to HCL and (3) facilitators to accessing HCL. Semantic content analysis and consensus coding involving two team members were used to generate themes. Thematic saturation was achieved. RESULTS: Youth (Medianage 14.9 years, 67% female) and parents (92% female) were interviewed. Youth and their parents reported that access to HCL provides a new outlook on living with T1D, although managing T1D is still hard. They felt that diabetes technology is most helpful for those struggling with management. Participants experienced barriers to access including misconceptions of HCL systems, clinician bias and systemic racism. They suggested these barriers can be overcome by offering diabetes technology education for all people with T1D, increasing awareness of HCL in the community and providing resources to overcome barriers created by social determinants of health. CONCLUSIONS: The voices of historically minoritised youth with suboptimal T1D control and their parents provide important, previously unreported experiences and perspectives on barriers and facilitators to using HCL that will shape interventions to improve equity in access to diabetes technology.

Pediatric Lyme disease: systematic assessment of post-treatment symptoms and quality of life.

BACKGROUND: Lyme disease is common among children and adolescents. Antibiotic treatment is effective, yet some patients report persistent symptoms following treatment, with or without functional impairment. This study characterized long-term outcome of pediatric patients with Lyme disease and evaluated the case definition of post-treatment Lyme disease (PTLD) syndrome. METHODS: The sample included 102 children with confirmed Lyme disease diagnosed 6 months-10 years prior to enrollment (M = 2.0 years). Lyme diagnosis and treatment information was extracted from the electronic health record; parent report identified presence, duration, and impact of symptoms after treatment. Participants completed validated questionnaires assessing health-related quality of life, physical mobility, fatigue, pain, and cognitive impact. RESULTS: Most parents reported their child's symptoms resolved completely, although time to full resolution varied. Twenty-two parents (22%) indicated their child had at least one persistent symptom >6 months post-treatment, 13 without functional impairment (PTLD symptoms) and 9 with functional impairment (PTLD syndrome). Children with PTLD syndrome had lower parent-reported Physical Summary scores and greater likelihood of elevated fatigue. CONCLUSIONS: In the current study, most children with Lyme disease experienced full resolution of symptoms, including those who initially met PTLD syndrome criteria. Effective communication about recovery rates and common symptoms that may persist post-treatment is needed. IMPACT: The majority of pediatric patients treated for all stages of Lyme disease reported full resolution of symptoms within 6 months. 22% of pediatric patients reported one or more symptom persisting >6 months, 9% with and 13% without accompanying functional impairment. Effective communication with families about recovery rates and common symptoms that may persist post-treatment of Lyme disease is needed.

Evaluating Transition Readiness in Older Adolescents and Young Adults With Type 1 Diabetes.

For older adolescents and young adults (AYAs) with type 1 diabetes, successful transition from pediatric to adult diabetes care requires ongoing planning and support. Yet, the transition to adult care is not always smooth. Some AYAs struggle to leave pediatric care or experience significant gaps between pediatric and adult diabetes care. The use of diabetes-specific transition readiness assessments can inform transition planning and support successful preparation for adult care. This study evaluated transition readiness in a diverse sample of AYAs nearing transition to adult diabetes care. Findings suggest that AYAs may benefit from additional preparation and education related to sexual health, tobacco use, and diabetes complications.

Satisfaction With Participation in the First STEPS Behavioral Intervention: Experiences of Parents of Young Children With Newly Diagnosed Type 1 Diabetes.

OBJECTIVE: Parents of young children with new-onset type 1 diabetes (T1D) often experience significant distress and struggle with T1D management during a challenging developmental stage. The First STEPS (Study of Type 1 in Early childhood and Parenting Support) trial evaluated a stepped-care behavioral intervention comprising increasingly intensive intervention steps (peer parent coach, cognitive-behavioral counseling, consultations with diabetes educator and psychologist) based on need. The intervention improved parental depressive symptoms compared to usual care. Subsequently, we examined parent satisfaction with the intervention to guide potential implementation and refinement for future trials. METHODS: Participants were 157 parents of young children newly diagnosed with T1D. At 9 months post randomization, n = 153 completed satisfaction questionnaires and n = 17 completed qualitative interviews. Satisfaction ratings about trial procedures and each intervention step were summarized. We used thematic analysis with the interview transcripts to generate themes related to participants' experiences in the trial overall and intervention specifically. We explored differences in themes between participants who did versus did not respond to the intervention and among those who experienced different intervention steps. RESULTS: Most participants in both arms rated study participation and methods positively (>95%), and those completing interviews described high satisfaction with study procedures overall, retention incentives, and contact with study staff. Intervention participants' satisfaction ratings were high across steps. Two qualitative themes reflected satisfaction with the intervention enhancing self-efficacy and social support. CONCLUSIONS: High satisfaction suggests implementing a stepped-care behavioral intervention as part of routine clinical care following T1D diagnosis would be well received.

Parent Perspectives of School/Daycare Experiences in Young Children Newly Diagnosed With Diabetes.

OBJECTIVE: A central part of family adjustment to a new diagnosis of type 1 diabetes (T1D) is integrating T1D management into the child's school/daycare. This may be particularly challenging for young children who rely on adults for their diabetes management. This study aimed to describe parent experiences with school/daycare during the first 1.5 years following a young child's T1D diagnosis. METHODS: As part of a randomized controlled trial of a behavioral intervention, 157 parents of young children with new-onset (<2 months) T1D reported on their child's school/daycare experience at baseline and at 9- and 15-month post-randomization. We used a mixed-methods design to describe and contextualize parents' experiences with school/daycare. Qualitative data were collected via open-ended responses, and quantitative data were collected from a demographic/medical from. RESULTS: While most children were enrolled in school/daycare at all time points, over 50% of parents endorsed that T1D affected their child's enrollment, rejection, or removal from school/daycare at 9 or 15 months. We generated five themes related to parents' school/daycare experiences: Child factors, Parent factors, School/Daycare factors, Cooperation between Parents and Staff, and Socio-historical factors. Parents of younger children and those with lower subjective socioeconomic status were significantly more likely to endorse challenges with school/daycare enrollment. CONCLUSIONS: School/daycare settings present challenges for parents of young children with T1D. Changes may need to occur across contexts to support early childhood education, including advocacy resources for parents to navigate school policies, increased training for school staff, and healthcare team outreach initiatives to parents and schools.

Weight Management Behaviors are Associated with Elevated Glycemic Outcomes in Adolescents and Young Adults with Type 1 Diabetes.

Many adolescents and young adults (AYAs) with type 1 diabetes (T1D) engage in weight management behaviors (i.e., trying to lose weight), and efforts to manage weight may impact glycemic control. We assessed objective/subjective weight status and weight management behaviors in a diverse sample of 76 AYAs with T1D, and examined differences in sociodemographic characteristics and A1c levels by the following categories: (1) Overweight BMI/weight management (n = 21), (2) overweight BMI/no weight management (n = 6), (3) in/below-range BMI/weight management (n = 25), (4) in/below-range BMI/no weight management (n = 24). Subjective overweight status was more common among late adolescents and females; female gender was associated with weight management behaviors. AYAs endorsing weight management behaviors evidenced higher A1c values than those who did not. Clinicians working with AYAs should be aware of associations among weight management and glycemic indicators and routinely screen for weight management behaviors. Future research should explore interventions to promote healthy lifestyle behaviors among AYAs.

Young Children with Type 1 Diabetes: Recent Advances in Behavioral Research.

PURPOSE OF REVIEW: This review provides a recent update of behavioral research pertinent to young children with T1D and addresses current priorities and future directions. RECENT FINDINGS: Rates of type 1 diabetes (T1D) in young children (ages 1-7) are continuing to rise. Since 2014, changes to diabetes care and management have impacted young children and reinforced the need for increased attention and interventions to support diabetes management, especially in caregivers who are primarily responsible for their young child's diabetes management. T1D is associated with unique physiologic challenges in young children, with constant management demands elevating parental diabetes-related stress and fear of hypoglycemia. Diabetes technology use has significantly increased in young children, contributing to improvements in glycemic levels and parent and child psychosocial functioning. Yet despite the positive outcomes demonstrated in select clinical behavioral interventions, research with this young child age group remains limited in scope and quantity.

Up all night? Sleep disruption in parents of young children newly diagnosed with type 1 diabetes.

BACKGROUND: Despite the known challenges of parental adjustment to new-onset type 1 diabetes (T1D) in young children, little is known about parental sleep soon after diagnosis. METHODS: Parents (n = 157) of young children (4.5 ± 1.6 years) with new-onset T1D (29 ± 15 days) self-reported their sleep (Pittsburgh Sleep Quality Index, PSQI) at the baseline of a behavioral randomized control trial. We examined sleep patterns and relations with continuous glucose monitor (CGM) use. RESULTS: Over two-thirds (68.8%) reported poor sleep quality (PSQI > 5, M = 8.3 ± 4.1). The mean reported sleep duration was 5.9 ± 1.4 h/night. PSQI scores did not significantly differ by CGM use. CONCLUSIONS: Sleep disruption is a pervasive self-reported problem among parents of young children emerging early after the T1D diagnosis. Healthcare providers should discuss parental sleep as part of diabetes care soon after diagnosis. Further interventions targeting parental sleep may be of benefit.

Clinically elevated parent depressive symptoms and stress at child type 1 diabetes diagnosis: Associations with parent diabetes self-efficacy at 18-months post-diagnosis.

OBJECTIVE: Eighteen percent of new diagnoses of type 1 diabetes (T1D) occur in children ages 9 and younger, and the burden of diabetes management in young children predominantly falls on parents. Despite the significant amount of information parents must learn and implement quickly after diagnosis, little research has examined diabetes self-efficacy in parents of young children soon after diagnosis in a longitudinal manner. The current study examined changes in parent diabetes self-efficacy over time, and parent depressive symptoms and stress soon after child T1D diagnosis as predictors of parent diabetes self-efficacy at 12- and 18-months post-diagnosis. RESEARCH DESIGN AND METHODS: One hundred fifty-seven primary caregivers (91.7% female, 62.2% White, Non-Hispanic) of young children (Mage  = 4.47 ± 1.65 years, 54.8% female, 60% White, Non-Hispanic) were recruited within 2 months of their child's T1D diagnosis from two pediatric hospitals in the United States as part of a randomized clinical trial. Parents self-reported on their diabetes self-efficacy, depressive symptoms, and stress and at baseline (Mdays since diagnosis = 29) and on parent diabetes self-efficacy again 12- and 18-months post-diagnosis. RESULTS: Parent diabetes self-efficacy significantly improved from baseline to 12-months and 18-months post-diagnosis (p < 0.05). Parents exhibiting clinically elevated levels of depressive symptoms and stress at baseline had significantly lower parent diabetes self-efficacy 12- and 18-months post-diagnosis compared to parents with normal levels of depressive symptoms and stress. CONCLUSIONS: Brief interventions for parents with clinically elevated depressive symptoms and stress soon after their child's diagnosis may improve parents' diabetes self-efficacy and ultimately support the management of their child's diabetes.

Correlates and Patterns of COVID-19 Vaccination Intentions among Parents of Children with Type 1 Diabetes.

OBJECTIVE: To examine psychosocial, sociodemographic, medical, and coronavirus disease 2019 (COVID-19) experiences as correlates of COVID-19 vaccination intentions among parents of children with type 1 diabetes (T1D). METHODS: 121 parents of children with T1D (Mchild age = 7.78 ± 1.70; MA1c = 8.3% ± 1.5%) in the mid-Atlantic and Southwest regions completed self-report measures in February to March 2021. RESULTS: Parents' general vaccination behaviors and attitudes were associated with COVID-19 vaccination intentions. Child insurance type and social distancing adherence were associated with vaccination intention in the Southwest site. Higher A1c was associated with lower intention. Vaccine safety was the top reported concern. CONCLUSIONS: COVID-19 vaccination intentions are important to address in parents of youth with health conditions.

Predictors of mood, diabetes-specific and COVID-19-specific experiences among parents of early school-age children with type 1 diabetes during initial months of the COVID-19 pandemic.

OBJECTIVE: The current study explored pre-pandemic sociodemographics, medical characteristics, social/family support, and mood symptoms, and current COVID-19 experiences as predictors of mood, positive/negative diabetes-specific experiences, and COVID-19-specific distress among parents of children with type 1 diabetes during the COVID-19 pandemic. We hypothesized that parents from marginalized backgrounds, youth with higher pre-pandemic A1c and no CGM use, parents with lower pre-pandemic social/family support and more pre-pandemic mood/anxiety symptoms, and those with more negative COVID-19 experiences would have more depressive symptoms, fewer positive and more negative diabetes-specific experiences, and more COVID-19-specific distress during the initial months of the pandemic. RESEARCH DESIGN AND METHODS: Participants were parents of early school-age children with type 1 diabetes (n = 100; 65% non-Hispanic, white, 92% mothers, 75% married; Mchild age  = 6.74 ± 1.59 years) who had completed a behavioral intervention trial ≥6 months ago and were re-contacted in June/July 2020 to report on their COVID-19 pandemic experiences and parent psychosocial outcomes. Pre-pandemic parent mood/anxiety symptoms, family/social support, and children's medical characteristics (CGM use; MA1C  = 8.17% ± 1.40%) were assessed M = 1.45 ± 0.59 years prior. RESULTS: More pre-pandemic social support predicted fewer depressive symptoms, more positive diabetes-specific experiences, and less COVID-19-specific distress during the pandemic. More pre-pandemic depressive symptoms predicted more depressive symptoms during the pandemic. More life disruptions due to the pandemic were associated with more negative diabetes-specific experiences and more COVID-19-specific distress. Parents of color had more negative diabetes-specific experiences. CONCLUSIONS: Social support may be particularly important to assess and address through intervention. Pediatric diabetes care providers should monitor parent experiences in relation to children's diabetes management. ClinicalTrials.gov identifier: NCT02527525.

Promoting High-Quality Health Communication Between Young Adults With Diabetes and Health Care Providers.

Young adults with diabetes assume increasing responsibility for communicating with their health care providers, and engaging in high-quality health communication is an integral component of overall diabetes self-management. This article provides an overview of the main features of health communication, factors that may influence communication quality, interventions to promote communication skills, and practical strategies for clinicians working with young adults with diabetes. The review concludes with a comprehensive summary of future directions for health communication research.

Implementation and Preliminary Feasibility of an Individualized, Supportive Approach to Behavioral Care for Parents of Young Children Newly Diagnosed With Type 1 Diabetes.

There are significant stressors related to parenting a young child with newly diagnosed type 1 diabetes (T1D). Despite these challenges, there are not yet clearly defined interventions to help promote psychological health and adherence for families with young children with T1D. First STEPS is a tailored stepped care design intervention to positively impact parents' emotional functioning and children's glycemic control in young children newly diagnosed with T1D. The First STEPS intervention is derived from a combination of Cognitive Behavioral Theory and Social Cognitive Theory to support family adjustment to T1D, promote parental mastery over T1D tasks, increase coping skills to manage stressors associated with T1D, and build on the strengths of families newly diagnosed with T1D to help them achieve positive health and wellbeing outcomes. We present details about the intervention and describe two pilot participants as case studies. Results indicated that the treatment and delivery model were acceptable to the pilot participants, as evidenced by treatment completion and satisfaction ratings. Future directions for this work include testing the efficacy of this new treatment in a randomized controlled trial.

Diagnosis and treatment of polycystic ovary syndrome in adolescents.

ABSTRACT: Polycystic ovary syndrome (PCOS), characterized by ovulatory dysfunction and hyperandrogenism, is one of the most common endocrine disorders in women of reproductive age. Early diagnosis can help clinicians address associated long-term metabolic and reproductive health complications and mitigate the negative effects of PCOS on a patient's mental health and quality of life. Clinicians often are challenged by the diagnosis and management of PCOS because of controversies around diagnostic criteria, especially for adolescents. The International Consortium of Paediatric Endocrinology 2017 Consensus Statement provides practical guidance for clinicians to implement best practices for the identification, diagnosis, and management of PCOS in adolescents.

The current state of parent feeding behavior, child eating behavior, and nutrition intake in young children with type 1 diabetes.

BACKGROUND: One integral component of type 1 diabetes (T1D) management is attention to nutrition, which can be particularly challenging in young children. OBJECTIVE: The current study reports on parent and child eating/feeding behavior and nutrition intake as compared with current recommendations for pediatric T1D. SUBJECTS: Participants were 46 children ages 2 to 5 diagnosed with T1D and one parent. METHODS: The Behavioral Pediatrics Feeding Assessment Scale (BPFAS) was used to assess parent feeding and child eating behaviors. The Remote Food Photography Method (RFPM) was used to analyze nutrition intake at breakfast. Demographic and medical information were collected via self-report and medical chart review. RESULTS: In the current sample, 37% of BPFAS scores were above the cutoff for problem child eating behavior. Only 28% of participants met the recommended goals for glycemic control (hemoglobin A1c, HbA1c < 7.5). Children who did not meet glycemic control targets reported higher carbohydrate intake than those meeting targets. Protein recommendations were met by 46%; 22.7% met the recommendation for carbohydrate intake, and 45.5% met fat intake recommendations. The majority of the sample did not meet body mass index percentile (BMI%) recommendations with 51% having a BMI% above the 85th percentile. CONCLUSIONS: Many parents of young children with T1D report problem child eating behaviors. Further, a significant number of young children are not meeting glycemic, nutritional, or BMI guidelines for T1D. Routine screening for dietary difficulties in young children is warranted. Future research should aim to examine interventions targeting families with young children not meeting nutrition, glycemic, or BMI guidelines.

Risk of Disordered Eating Behaviors in Adolescents with Type 1 Diabetes.

OBJECTIVE: Management of type 1 diabetes (T1D) may be difficult for adolescents, who often fail to meet glycemic targets. Adolescents are also at an increased risk for negative affect (i.e., anxiety, depressive symptoms) and are prone to disordered eating behaviors (DEB). This study hypothesized that negative affect would be associated with DEB, self-management, and glycemic control, but that this would be moderated by negative urgency (the urge to engage in impulsive behaviors in response to negative affect), such that this relationship would be significant only for those with higher negative urgency. METHODS: The Eating in Adolescents with T1D Study recruited 100 caregiver-adolescent dyads (55% male youth, 48% Caucasian) to complete questionnaires reporting on the adolescent's negative affect, negative urgency, DEB, and diabetes management. Glycemic control 3-4 months following survey completion was extracted from the medical record. RESULTS: A total of 61% of adolescents reported elevated symptoms of anxiety or depression and 25% reported elevated disordered eating symptoms. A total of 81% of adolescents had an A1c level above recommended targets. Negative affect was associated with DEB, suboptimal T1D self-management, and suboptimal glycemic outcomes, moderated by higher levels of negative urgency. Negative affect was associated directly with suboptimal self-management and glycemic control, but not DEB, at all levels of negative urgency. CONCLUSIONS: Adolescents reported high levels of negative affect, DEB, and suboptimal glycemic control. Interventions that target negative affect and negative urgency in adolescents with T1D are needed in order to reduce the risk for DEB and negative diabetes health outcomes.

Peer Coaching Interventions for Parents of Children with Type 1 Diabetes.

PURPOSE OF REVIEW: Peer support is a promising model of providing psychosocial support to parents of children with type 1 diabetes. This review seeks to discuss the findings of the existing literature in peer coaching as it relates to parents and diabetes as well as to identify gaps in knowledge for future intervention development and implementation. RECENT FINDINGS: Peer support programs vary widely with regard to recruitment, training, and delivery protocols. Across most programs, ongoing support and supervision are provided to peer coaches. Despite inconsistent effects on psychosocial and child health outcomes, parent coaching is consistently a highly acceptable and feasible intervention with parents of children with T1D. Current evidence supports use of parent coaching as part of a multicomponent intervention or program to increase patient satisfaction, but more research is needed to determine if it can stand alone as an active mechanism for behavior change. The use of peer coach interventions for parents of young children with diabetes is feasible to implement and highly acceptable. However, more research is needed to understand the enduring impact for target parents and peer coaches alike, as well as impact on child outcomes.

Introduction to the Special Issue on Adolescent and Young Adult Health: Why We Care, How Far We Have Come, and Where We Are Going.

This special issue on adolescent and young adult (AYA) health comprises 15 original articles. The special issue recognizes the importance of AYA-focused research, highlights unique issues across the AYA period, and showcases cutting-edge research focused on AYAs. We describe the rationale for focusing on the AYA population, themes of the special issue, and future directions.

Factors Associated with Recruitment and Retention in Randomized Controlled Trials of Behavioral Interventions for Patients with Pediatric Type 1 Diabetes.

The purpose of this study is to describe recruitment and retention experiences from three behavioral randomized controlled trials conducted among youth with type 1 diabetes. Eligibility, recruitment, and retention data were examined. Study-specific differential study participation and loss-to-follow-up analyses assessed the relations of patient characteristics with treatment completion and 6-month retention. Multivariable logistic regression identified factors independently associated with 6-month retention among all participants. Approximately 70-92 % of randomized participants completed treatment and 58-90 % were retained for follow-up. Older patients and non-Caucasian patients were less likely to enroll. Treatment completion and 6-month retention were less likely among youth who were older, had worse baseline glycemic control, lower household income, and/or unmarried parents. Some subgroups of patients are less likely to participate in research and are more susceptible to loss-to-follow-up. More work is needed to understand the facilitators and barriers to research participation.