Observed collaborative and intrusive parenting behaviours associated with psychosocial outcomes of adolescents with type 1 diabetes and their maternal caregivers.

AIMS: Maternal caregiver involvement is strongly associated with psychosocial and glycemic outcomes amongst adolescents with type 1 diabetes (T1D); however, previous studies have lacked detailed, objective examinations of caregiver involvement. We examined the relationship between observed parenting behaviors and psychosocial and glycemic outcomes amongst youth with T1D. METHODS: Data collected from adolescents with T1D (age 11-17) and their female caregivers as a part of a randomized controlled trial were analyzed. These included structured, observation-based scores of adolescent-caregiver dyads engaged in videotaped interactions and selected psychosocial and glycemic outcome measures. RESULTS: In adjusted analyses, higher levels of intrusive parenting behaviors during observed interactions were associated with higher diabetes distress in adolescents, but no difference in HbA1c. Associations between intrusive parenting behaviors and psychosocial outcomes were stronger for females compared to males for both diabetes distress and quality of life. Similarly, associations between collaborative parenting behaviors and quality of life were stronger for female adolescents than males. No associations were observed between collaborative parenting behaviors and glycemic outcomes. Consistent with previous work, we noted higher levels of adolescent-reported family conflict were associated with lower adolescent quality of life and higher diabetes distress with no significant difference between male and female adolescents. CONCLUSION: These findings indicate that high levels of intrusive parenting behaviors, such as lecturing or over-controlling behaviors, are associated with lower levels of adolescent well-being, particularly among adolescent girls. This work suggests that interventions to reduce intrusive parenting by maternal caregivers could result in improved psychosocial outcomes for adolescents with T1D.

Sedentary Behavior and Physical Activity Associated with Psychosocial Outcomes in Adolescents with Type 1 Diabetes.

Background: Adolescents with type 1 diabetes (T1D) are particularly vulnerable to poor psychosocial outcomes-high rates of diabetes distress and poor quality of life are common among this cohort. Previous work in the general population demonstrated positive associations between quality of life and increases in moderate-to-vigorous physical activity (MVPA), as well as decreased sedentary behavior. While survey-based assessments of young adults with T1D observed similar trends, these studies were limited by their use of subjective assessments of MVPA and sedentary behavior. The use of direct activity monitoring is needed to establish the association between psychosocial outcomes and MVPA and sedentary behavior among adolescents with T1D. Objective: To explore the association between objectively measured MVPA and sedentary behavior on psychosocial outcomes among adolescents with T1D. Subjects and Methods: The current study is a secondary analysis of baseline data collected for a pilot trial of sleep-promoting intervention for adolescents with T1D. Participants (n = 29, with a mean age of 15.9 ± 1.3 years) completed baseline surveys and wore an actigraph for a week following the baseline visit. We examined minutes per week of MVPA and proportion of awake time spent sedentary in relation to adolescents' diabetes distress, depressive symptoms, and diabetes-related quality of life. Results: Participants engaged in a mean of 19.6 ± 22.4 minutes of MVPA per day and spent 68.6 ± 9.9% of their awake time sedentary. MVPA was associated with lower diabetes distress in unadjusted (-3.6; 95% CI: -6.4 to -0.8) and adjusted (-2.6; 95% CI: -5.0--0.3) analyses. Sedentary time was associated with higher diabetes distress in adjusted (6.3; 95% CI: 1.3-11.2) but not unadjusted (6.0; 95% CI: -5.6-12.6) analyses. In secondary analyses, we did not observe significant associations between quality of life or depressive symptoms with either MVPA or sedentary behavior. Discussion: Our findings extend previous survey-based work demonstrating an association between decreased diabetes distress with greater weekly MVPA and lower sedentary time. The current study highlights the multifaceted benefits of physical activity in this population and provides preliminary evidence for developing interventions to reduce sedentary time as an alternative method to improve psychosocial outcomes in this at-risk population.

Advances, Challenges, and Cost Associated with Continuous Glucose Monitor Use in Adolescents and Young Adults with Type 1 Diabetes.

PURPOSE OF REVIEW: Continuous glucose monitors (CGM) are transforming diabetes management, yet adolescents and young adults (AYA) with type 1 diabetes (T1D) do not experience the same benefits seen with CGM use in adults. The purpose of this review is to explore advances, challenges, and the financial impact of CGM use in AYA with T1D. RECENT FINDINGS: CGM studies in young adults highlight challenges and suggest unique barriers to CGM use in this population. Recent studies also demonstrate differences in CGM use related to race and ethnicity, raising questions about potential bias and emphasizing the importance of patient-provider communication. Cost of these devices remains a significant barrier, especially in countries without nationalized reimbursement of CGM. More research is needed to understand and address the differences in CGM utilization and to increase the accessibility of CGM therapy given the significant potential benefits of CGM in this high-risk group.

Disparities in Continuous Glucose Monitor Use Between Children With Type 1 Diabetes Living in Urban and Rural Areas.

OBJECTIVE: Despite evidence that continuous glucose monitoring (CGM) use is associated with lower HbA1c among children with type 1 diabetes, uptake of this technology remains lower among those with difficulty accessing health care, including those from lower socioeconomic status backgrounds and racial and ethnic minorities. In this study, we sought to explore the impact of rural location in use of CGM technology to guide patient and provider decision making. RESEARCH DESIGN AND METHODS: In this retrospective study of electronic health record demographic and visits data from a single diabetes program from 1 January 2018 through 31 December 2021, we compared the odds of completing a visit with (+) and without (-) CGM interpretation between rural-urban commuting area (RUCA) designations. RESULTS: Among the 13,645 visits completed by 2,008 patients with type 1 diabetes younger than age 18 years, we found children living in small rural towns had 31% lower odds (6.3% of CGM+ visits, 8.6% of CGM- visits; adjusted odds ratio [aOR] 0.69, 95% CI 0.51-0.94) and those living in isolated rural towns had 49% lower odds (2.0% of CGM+ visits, 3.4% of CGM- visits; aOR 0.51, 95% CI 0.28-0.92) of completing a CGM-billed clinic visit compared with those living in urban areas (70.0% of CGM+ visits, 67.2% of CGM- visits). We also found significant differences in CGM-billed visits by neighborhood deprivation as well as race/ethnicity and insurance payor. CONCLUSIONS: Geographic location presents a meaningful barrier to access to care for patients living with type 1 diabetes. Further work is needed to identify and address the needs of children and families living in rural areas to improve the care of these patients.

Prolonged lapses between pediatric and adult care are associated with rise in HbA1c and inpatient days among patients with type 1 diabetes.

AIM: To quantify the association between the duration of the pediatric-to-adult care transfer with glycemic control among patients with type 1 diabetes (T1D). METHODS: This retrospective cohort study included patients with T1D who completed transfer between pediatric and adult diabetes clinics at a single academic medical center between 2004 and 2020. The primary exposure was time from the last pediatric to first adult diabetes care encounter. The primary outcome was the average HbA1c in the first year after entry into adult care. RESULTS: A total of 449 patients (mean age at transfer 19.8yrs, 51.7 % male) were included for analysis. Transfer required a median of nearly 5 months (196 days; IQR:93-251) and in adjusted and unadjusted models was strongly associated with increased HbA1c within 1 year of transfer (0.19 %, 2 mmol/mol; 95 %CI:0.04 %-0.33 %) for each 6 months of latency. In secondary analyses, transfer latency also exhibited a significant association with days spent hospitalized (IRR 1.23 per 6 months; 95 %CI:1.08-1.33). CONCLUSIONS: Our findings isolate and quantify the impact of prolonged lapses in care associated with the pediatric-to-adult care transfer. These findings underscore the need for providers and healthcare systems to improve this care transition in order to improve outcomes for this vulnerable patient population.

The Rapid Transition to Telemedicine and Its Effect on Access to Care for Patients With Type 1 Diabetes During the COVID-19 Pandemic.

OBJECTIVE: We compared the uptake of telemedicine for diabetes care across multiple demographic groups during the coronavirus disease 2019 pandemic to understand the impact of telemedicine adoption on access to care. RESEARCH DESIGN AND METHODS: The study analyzed demographic information of patients with type 1 diabetes seen between 1 January 2018 and 30 June 2020 at a single center. We compared the odds of completing a visit via telemedicine across multiple demographic characteristics. RESULTS: Among 28,977 patient visits, the odds of completing a visit via telemedicine were lower among non-English-speaking (1.7% vs. 2.7%; adjusted odds ratio [aOR] 0.45, 95% CI 0.26-0.79) and Medicaid-insured (32.0% vs. 35.9%; aOR 0.83, 95% CI 0.72-0.95) pediatric patients. No clinically significant differences were observed for other demographic factors. CONCLUSIONS: Rapid transition to telemedicine did not significantly impact access to diabetes care for most demographic groups. However, disparities in access to care for historically marginalized groups merit close attention to ensure that use of telemedicine does not exacerbate these inequities.

Phenotypic Profiling in Subjects Heterozygous for 1 of 2 Rare Variants in the Hypophosphatasia Gene (ALPL).

CONTEXT: Hypophosphatasia (HPP) is a syndrome marked by low serum alkaline phosphatase (AlkP) activity as well as musculoskeletal and/or dental disease. While the majority of subjects with HPP carry a pathogenic variant in the ALPL gene or its regulatory regions, individual pathogenic variants are often not tightly correlated with clinical symptomatology. We sought to better understand the genotype/phenotype correlation in HPP by examining the clinical and biochemical data of 37 subjects with 2 rare variants in ALPL. METHODS: Through BioVU, a DNA biobank that pairs individuals' genetic information with their de-identified medical records, we identified subjects with 2 rare variants with distinct reported clinical phenotypes (p.D294A and p.T273M). We then performed a manual review of these subjects' de-identified medical records along with computational modeling of protein structure to construct a genetic, biochemical and clinical phenotype for each subject and variant. RESULTS: Twenty subjects with the p.D294A variant and 17 with the p.T273M variant had sufficient data for analysis. Among subjects in our cohort with the p.D294A variant, 6 (30.0%) had both clinical bone disease and serum AlkP activity below 40 IU/L while 4 subjects (23.5%) with the p.T273M variant met the same criteria despite the distinct clinical phenotypes of these variants. CONCLUSIONS: Given the loose genotype/phenotype correlation in HPP seen in our cohort, clinical context is crucial for the interpretation of genetic test results to guide clinical care in this population. Otherwise, over- or under-diagnosis may occur, resulting in misidentification of those who may benefit from additional screening and perhaps pharmacologic intervention.

Rare Variants in the Gene ALPL That Cause Hypophosphatasia Are Strongly Associated With Ovarian and Uterine Disorders.

Context: Mutations in alkaline phosphatase (AlkP), liver/bone/kidney (ALPL), which encodes tissue-nonspecific isozyme AlkP, cause hypophosphatasia (HPP). HPP is suspected by a low-serum AlkP. We hypothesized that some patients with bone or dental disease have undiagnosed HPP, caused by ALPL variants. Objective: Our objective was to discover the prevalence of these gene variants in the Vanderbilt University DNA Biobank (BioVU) and to assess phenotypic associations. Design: We identified subjects in BioVU, a repository of DNA, that had at least one of three known, rare HPP disease-causing variants in ALPL: rs199669988, rs121918007, and/or rs121918002. To evaluate for phenotypic associations, we conducted a sequential phenome-wide association study of ALPL variants and then performed a de-identified manual record review to refine the phenotype. Results: Out of 25,822 genotyped individuals, we identified 52 women and 53 men with HPP disease-causing variants in ALPL, 7/1000. None had a clinical diagnosis of HPP. For patients with ALPL variants, the average serum AlkP levels were in the lower range of normal or lower. Forty percent of men and 62% of women had documented bone and/or dental disease, compatible with the diagnosis of HPP. Forty percent of the female patients had ovarian pathology or other gynecological abnormalities compared with 15% seen in controls. Conclusions: Variants in the ALPL gene cause bone and dental disease in patients with and without the standard biomarker, low plasma AlkP. ALPL gene variants are more prevalent than currently reported and underdiagnosed. Gynecologic disease appears to be associated with HPP-causing variants in ALPL.