Thiamine-Responsive Megaloblastic Anemia-Related Diabetes: Long-Term Clinical Outcomes in 23 Pediatric Patients From the DPV and SWEET Registries.

OBJECTIVES: To describe clinical presentation and long-term outcomes in a large cohort of children diagnosed with thiamine-responsive megaloblastic anemia (TRMA)-related diabetes. METHODS: Data from the Diabetes Patienten Verlaufsdokumentation (DPV) and Better control in Pediatric and Adolescent diabeteS: Working to crEate CEnTers of Reference (SWEET) registries were used to identify cases. Complementary information was collected through a chart review of each case. Descriptive analyses with medians and interquartile ranges and numbers (proportions) were tabulated. RESULTS: We identified 23 cases (52% male) in the 2 registries. Eighteen (78%) had genetic confirmation of TRMA. Median age at diabetes onset was 1.4 (quartiles 0.8 to 3.6) years and median age at initiation of thiamine treatment was 5.9 (2.4 to 12.4) years. At their most recent visit, patients' median age was 14.3 (8.1 to 17.5) years, glycated hemoglobin level was 6.9% (6.1% to 7.9%), insulin dose was 0.9 (0.4 to 1.2) units/kg per day and thiamine dose was 200 (100 to 300) mg/day. Three patients were not treated with insulin or antidiabetic drugs. There was no difference in diabetes outcomes in patients with initiation of thiamine ≤1 year after diabetes onset compared to patients with initiation of thiamine >1 year after diabetes onset. CONCLUSIONS: This is the longest case series of pediatric TRMA-related diabetes reported to date. Diabetes onset often occurs several years before initiation of thiamine supplementation. Early initiation of thiamine (within 1 year of diabetes onset) was not linked to improved diabetes outcome. However, the role of thiamine in pancreatic function needs further assessment. Patients with TRMA-related diabetes maintained good glycemic control even after 9 years (median) of follow up.

High prevalence of disordered eating behavior in Danish children and adolescents with type 1 diabetes.

OBJECTIVE: A higher prevalence of disordered eating behavior (DEB) has been demonstrated in children and adolescents with type 1 diabetes (T1D) compared to healthy aged-matched peers. DEB is associated with higher HbA1c levels and increased risk of developing complications to T1D. The aim of this study was to determine the prevalence of DEB in a Danish cohort of children and adolescents with T1D aged 11 to 19 years and to characterize them regarding metabolic control and relevant clinical data. RESEARCH DESIGN AND METHODS: In a cross-sectional study, we determined the prevalence of DEB using the revised Diabetes Eating Problem Survey (DEPS-R) questionnaire. HbA1c and relevant clinical data were obtained at the time they filled in the questionnaire. RESULTS: Hundred and ninety-two children and adolescents (46% girls) aged 11 to 19 years with T1D were included from the pediatric diabetes outpatient clinic. A total of 40 participants (21%) had DEB. The prevalence was higher among girls compared with boys (34.1% vs 8.9%) and those who had DEB were older (16.7 vs 15.0 years, P < .001), had longer duration of T1D (7.5 vs 4.9 years, P < .001), higher BMI Z-scores (1.2 vs 0.3, P < .001), higher HbA1c (72.8 (8.8%) vs 62.0 (7.8%) mmol/mol, P < .001), higher total cholesterol (4.6 mmol/L vs 4.2 mmol/L, P = .0048), and LDL (2.7 vs 2.3, P = .001) compared with those with no signs of DEB. CONCLUSION: As in other countries, the prevalence of DEB is high in Danish adolescents with T1D. Early detection of DEB is essential to prevent short- and long-term complications to T1D.

Decreased markers of bone turnover in children and adolescents with type 1 diabetes.

BACKGROUND AND AIM: Adults with type 1 diabetes (T1D) have increased risk of bone fractures and decreased bone mineral density (BMD). Alterations in bone turnover have been suggested as the link between T1D and the impaired bone health. Furthermore, bone turnover has been suggested to have beneficial effects on glucose metabolism. This study aimed at describing bone turnover markers (BTM), and the relationship with glycemic control, in children and adolescents with T1D. METHODS: A total of 173 (47% girls) children and adolescents aged 7.7 to 17.5 years with T1D for more than 1 year were included. Participants were evaluated by BMD together with measurements of selected BTM; two formation markers: osteocalcin (OCN) and procollagen type-1 amino-terminal propeptide (P1NP) and one resorption marker, C-terminal cross-linked telopeptide of type-1 collagen (CTX). BTM were converted into Z-scores utilizing new national references. RESULTS: Mean OCN Z-score (-0.68 ± 1.31), P1NP Z-score (-0.33 ± 1.03) and CTX Z-score (-0.43 ± 1.10) were all significantly lower than the reference population (P < .001). No associations were seen between BTM and T1D duration. BMD Z-score was comparable to the reference population and associated with none of individual BTMs. CTX Z-score was negatively associated with HbA1c (P = .007) independent of both exogenous and residual endogenous insulin. CONCLUSIONS: Markers of bone formation and resorption were decreased in children and adolescents with T1D. CTX Z-score associated negatively with HbA1c adjusted for insulin treatment and endogenous insulin production indicating a potential association between CTX and insulin sensitivity. The long-term consequences of decreased BTM on BMD need further attention.

Unaffected bone mineral density in Danish children and adolescents with type 1 diabetes.

AIMS: Adults with type 1 diabetes mellitus (T1D) have decreased bone mineral density (BMD). Our study aimed at determining BMD and the association to metabolic control in children and adolescents with T1D. METHODS: 244 patients (113 girls) with a median age of 14.3 years and T1D duration of 1-16 years were included. A dual-energy X-ray absorptiometry scan assessed BMD Z-scores excluding the head (total body less head, TBLH). TBLH-BMD were then investigated for associations to diabetes relevant variables such as HbA1c, insulin treatment, anthropometry and physical activity. RESULTS: In all participants the TBLH-BMD Z-score (0.22 ± 0.96) was significantly higher than the references. Separated by sex, TBLH-BMD Z-score in boys (0.11 ± 0.84) was no different from healthy peers whereas TBLH-BMD Z-score was significantly higher in girls (0.36 ± 1.09). The higher TBLH-BMD Z-score in girls were explained by higher BMI Z-scores. Participants with assumed final height (based on age) had an average TBLH-BMD Z-score of 0.78 ± 1.06, significantly higher than references independent of gender, HbA1c, height- and weight Z-scores. Multiple regression analyses showed that TBLH BMD Z-score associated negatively to HbA1c (P = 0.003), pump treatment (P = 0.019) and screen-time (P = 0.005) and positively to weight Z-score (P < 0.001). Physical activity, sex and puberty did not significantly associate to TBLH-BMD Z-score. CONCLUSION: Unlike adults with T1D, BMD is not decreased in children and adolescents with T1D and even elevated after attained final height. As HbA1c negatively associates to BMD, decreased BMD may progress over time. Whether changes in microarchitecture or bone metabolism precede changes in BMD needs further investigation.

High frequencies of dermatological complications in children using insulin pumps or sensors.

BACKGROUND: Dermatological complications in children and adolescents that are related to continuous subcutaneous insulin infusion (CSII) and continuous glucose monitoring (CGM) have not been well-characterized. This study examined the prevalence and characteristics of different types of dermatological complications. METHODS: Online questionnaires regarding dermatological complications related to CSII and/or CGM were returned from a total of 144 children and adolescents, aged 2 to 20 years. Both previous and current skin problems were reported along with their clinical characteristics. Descriptive statistics, χ2 tests, and multivariate analyses were used to evaluate the data. RESULTS: Of 143 patients using CSII, 90% had previous and 63% reported current dermatological complications. Non-specific eczema was most frequently reported and was currently present in 25.7% of the patients. These results were independent of age and current CGM use. Among the 76 patients using CGM, 46% reported current dermatological complications. A history of atopy was associated with dermatological complications in individuals using CSII, but not CGM. The patients rated CGM-related dermal issues as significantly worse than those associated with CSII (P < .05). CONCLUSIONS: Dermatological complications can be a serious problem in treating pediatric and adolescent patients of all ages with CSII and/or CGM. Only a few clinical characteristics associated with these complications were identified in this study, highlighting the need for prospective studies that might lead to improvements in the prevention and treatment of dermatological problems.

Designing a Self-Management App for Young People With Type 1 Diabetes: Methodological Challenges, Experiences, and Recommendations.

BACKGROUND: Young people with type 1 diabetes often struggle to self-manage their disease. Mobile health (mHealth) apps show promise in supporting self-management of chronic conditions such as type 1 diabetes. Many health care providers become involved in app development. Unfortunately, limited information is available to guide their selection of appropriate methods, techniques, and tools for a participatory design (PD) project in health care. OBJECTIVE: The aim of our study was to develop an mHealth app to support young people in self-managing type 1 diabetes. This paper presents our methodological recommendations based on experiences and reflections from a 2-year research study. METHODS: A mixed methods design was used to identify user needs before designing the app and testing it in a randomized controlled trial. App design was based on qualitative, explorative, interventional, and experimental activities within an overall iterative PD approach. Several techniques and tools were used, including workshops, a mail panel, think-aloud tests, and a feasibility study. RESULTS: The final mHealth solution was "Young with Diabetes" (YWD). The iterative PD approach supported researchers and designers in understanding the needs of end users (ie, young people, parents, and health care providers) and their assessment of YWD, as well as how to improve app usability and feasibility. It is critical to include all end user groups during all phases of a PD project and to establish a multidisciplinary team to provide the wide range of expertise required to build a usable and useful mHealth app. CONCLUSIONS: Future research is needed to develop and evaluate more efficient PD techniques. Health care providers need guidance on what tools and techniques to choose for which subgroups of users and guidance on how to introduce an app to colleagues to successfully implement an mHealth app in health care organizations. These steps are important for anyone who wants to design an mHealth app for any illness.

Isolated thoughts and feelings and unsolved concerns: adolescents' and parents' perspectives on living with type 1 diabetes - a qualitative study using visual storytelling.

AIMS AND OBJECTIVES: To explore and describe the experiences of adolescents and their parents living with type 1 diabetes, to identify their needs for support to improve adolescents' self-management skills in the transition from child- to adulthood. BACKGROUND: Adolescents with type 1 diabetes often experience deteriorating glycaemic control and distress. Parents are important in adolescents' ability to self-manage type 1 diabetes, but they report anxiety and frustrations. A better understanding of the challenges adolescents and parents face, in relation to the daily self-management of type 1 diabetes, is important to improve clinical practice. DESIGN: A qualitative explorative study using visual storytelling as part of individual interviews. METHODS: A purposive sample of nine adolescents and their parents (seven mothers, six fathers) took photographs illustrating their experiences living with type 1 diabetes. Subsequently, participants were interviewed individually guided by participants' photographs and a semistructured interview guide. Interviews were analysed using thematic analysis. RESULTS: Four major themes were consistent across adolescents and their parents: (1) striving for safety, (2) striving for normality, (3) striving for independence and (4) worrying about future. Although adolescents and parents had same concerns and challenges living with type 1 diabetes, they were experienced differently. Their thoughts and feelings mostly remained isolated and their concerns and challenges unsolved. CONCLUSIONS: The concerns and challenges adolescents and their parents face in the transition from child- to adulthood are still present despite new treatment modalities. Parents are fundamental in supporting the adolescents' self-management-work; however, the parties have unspoken concerns and challenges. RELEVANCE TO CLINICAL PRACTICE: Healthcare providers should address the parties' challenges and concerns living with type 1 diabetes to diminish worries about future including fear of hypoglycaemia, the burden of type 1 diabetes and the feeling of being incompetent in diabetes self-management. It is important to focus on supporting both adolescents and their parents, and to provide a shared platform for communication.

Type 2 diabetes mellitus in Danish children and adolescents in 2014.

BACKGROUND/OBJECTIVE: The global increase in childhood obesity has in some countries been followed by an increase in type 2 diabetes mellitus (T2DM); however, the prevalence of T2DM among Danish children and adolescents is currently unknown. The aims of this cross-sectional study were to determine the prevalence of T2DM in children and adolescents in Denmark together with status on treatment, metabolic control, and late diabetic complications. METHODS: Individuals were identified in the Danish Registry for Diabetes in Children and Adolescents (DanDiabKids), and clinical information regarding these was obtained from the respective pediatric departments. RESULTS: In total, seven young individuals (three boys) with T2DM were identified, according to the American Diabetes Association (ADA)/International Society of Pediatric and Adolecent Diabetes (ISPAD) guidelines, leading to a prevalence of T2DM at 0.6/100 000 inhabitants in Denmark. Only three of the patients had hyperglycemic symptoms at diagnosis. One boy was overweight and six were obese (two boys). Currently, no patients fulfill the treatment target of glycosylated hemoglobin (HbA1c) <7.0% (53 mmol/mol) according to the guidelines for treatment of diabetes. CONCLUSIONS: In 2014, there is no increasing prevalence of T2DM in children and adolescents in Denmark. Nevertheless, the current treatment regimen is not satisfying, as none of the patients truly fulfill the treatment target.

The 16-year incidence, progression and regression of diabetic retinopathy in a young population-based Danish cohort with type 1 diabetes mellitus: The Danish cohort of pediatric diabetes 1987 (DCPD1987).

The aim was to investigate the long-term incidence of proliferative diabetic retinopathy (PDR), and progression and regression of diabetic retinopathy (DR) and associated risk factors in young Danish patients with Type 1 diabetes mellitus. In 1987-89, a pediatric cohort involving approximately 75 % of all children with Type 1 diabetes in Denmark <19 years of age was identified (n = 720). In 1995, 339 (47.1 %) were re-studied with retinopathy graded and all relevant diabetic parameters assessed. Of those, 185 (54.6 %) were evaluated again in 2011 for the same clinical parameters. All retinal images were graded using modified early treatment of DR study for 1995 and 2011. In 1995, mean age was 21.0 years and mean diabetes duration 13.5 years. The 16-year incidence of proliferative retinopathy, 2-step progression and 2-step regression of DR was 31.0, 64.4 and 0.0 %, respectively, while the incidence of DR was 95.1 %. In a multivariate logistic regression model, progression to PDR was significantly associated with 1995 HbA1c (OR 2.61 per 1 % increase, 95 % CI 1.85-3.68) and 1995 diastolic blood pressure (OR 1.79 per 10 mmHg increase, 95 % CI 1.04-3.07). Two-step progression of DR was associated with male gender (OR 2.37 vs. female, 95 % CI 1.07-5.27), 1995 HbA1c (OR 3.02 per 1 % increase, 95 % CI 2.04-4.48) and 1995 vibration perception threshold (OR 1.19 per 1 Volt increase, 95 % CI 1.02-1.40). In conclusion, one in three progressed to PDR and two in three had 2-step progression despite young age and increased awareness of the importance of metabolic control. After 30 years duration of diabetes, the presence of DR is almost universal.