Aim: Age-appropriate support for diabetes self-care is essential during school time, and we investigated the perceived quality of support children and adolescents received in 2015 and 2008.

Methods: This national study was based on questionnaires answered by children and adolescents aged 6–15 years of age with type 1 diabetes attending schools or preschools in 2008 (n = 317) and 2015 (n = 570) and separate parental questionnaires. The subjects were recruited by Swedish paediatric diabetes units, with 41/44 taking part in 2008 and 41/42 in 2015.

Results: Fewer participants said they were treated differently in school because of their diabetes in 2015 than 2008. The opportunity to perform insulin boluses and glucose monitoring in privacy increased (80% versus 88%; p < 0.05). Most (83%) adolescents aged 13–15 years were satisfied with the support they received, but levels were lower in girls (p < 0.05). More subjects had hypoglycaemia during school hours (84% versus 70%, p < 0.001), but hypoglycaemia support did not increase and was lower for adolescents than younger children (p < 0.001).

Conclusion: Children and adolescents received more support for type 1 diabetes in Swedish schools in 2015 than 2008, but more support is needed by girls and during hypoglycaemia. 

Objectives: Children with type 1 diabetes (T1D) are not included in guidelines regarding diagnosis criteria for celiac disease (CD) without a diagnostic biopsy, due to lack of data. We explored whether tissue transglutaminase antibodies (anti-tTG) that were ≥ 10 times the upper limit of normal (10× ULN) predicted CD in T1D. Methods: Data from the Swedish prospective Better Diabetes Diagnosis study was used, and 2035 children and adolescents with T1D diagnosed between 2005–2010 were included. Of these, 32 had been diagnosed with CD before T1D. The children without CD were repeatedly screened for CD using anti-tTG antibodies of immunoglobulin type A. In addition, their human leukocyte antigen (HLA) were genotyped. All children with positive anti-tTG were advised to undergo biopsy. Biopsies were performed on 119 children and graded using the Marsh-Oberhüber classification. Results: All of the 60 children with anti-tTG ≥10x ULN had CD verified by biopsies. The degree of mucosal damage correlated with anti-tTG levels. Among 2003 screened children, 6.9% had positive anti-tTG and 5.6% were confirmed CD. The overall CD prevalence, when including the 32 children with CD before T1D, was 7.0% (145/2035). All but one of the children diagnosed with CD had HLA-DQ2 and/or DQ8. Conclusions: As all screened children and adolescents with T1D with tissue transglutaminase antibodies above 10 times the positive value 10x ULN had CD, we propose that the guidelines for diagnosing CD in screened children, when biopsies can be omitted, should also apply to children and adolescents with T1D as a noninvasive method.

Background: Autonomic neuropathy (AN) commonly arises as a long-term complication in diabetes mellitus and can be diagnosed from heart rate variability (HRV), calculated from electrocardiogram recordings. Psychosocial stress also affects HRV and could be one of several confounders for cardiac AN. The present work investigated the impact of psychosocial stress on HRV in individuals with type 1 diabetes mellitus (T1DM) and assessed the use of salivary cortisol as a biomarker for psychosocial stress in this context.

Methods: A total of 167 individuals 6–60 years old (113 with T1DM and 54 healthy controls) underwent 24-hr ECG recordings with HRV analysis. Salivary cortisol was sampled thrice during the registration day. Perceived psychosocial stress along with other factors of possible importance for the interpretation of HRV was documented in a diary.

Results: Heart rate variability (high-frequency power during sleep) was reduced (p <.05) with older age, longer diabetes duration, higher mean glucose levels, physical inactivity, and perceived psychosocial stress. Salivary cortisol levels in the evening were increased (p <.05) in women in ovulation phase, in individuals with preceding hypoglycemia or with hyperglycemia. The amplitude of salivary cortisol was reduced (p <.05) with the presence of perceived psychosocial stress, but only in adult healthy controls, not in individuals with diabetes.

Conclusion: Psychosocial stress might be a confounder for reduced HRV when diagnosing cardiac AN in T1DM. Salivary cortisol is, however, not a useful biomarker for psychosocial stress in diabetes since the physiological stress of both hypoglycemia and hyperglycemia seems to overrule the effect of psychosocial stress on cortisol. 

BACKGROUND: To study how metabolic control at onset of type 1 diabetes correlates to metabolic control and clinical parameters during childhood until transition from pediatric care to adult diabetes care.

MATERIALS AND METHODS: Data at onset, three months, one, three, and five years after diagnosis and at transition, on HbA1c and clinical parameters, on 8084 patients in the Swedish pediatric quality registry, SWEDIABKIDS, were used. Of these patients, 26% had been referred to adult diabetes care by 2014.

RESULTS: Children with HbA1c < 72 mmol/mol (8.7%) (20% of patients, low group) at diagnosis continued to have good metabolic control during childhood, in contrast to children with HbA1c > 114 mmol/mol (12.6%) (20% of patients, high group) at diagnosis, who continued to have high HbA1c at follow-up. For the individual, there was no significant correlation between high HbA1c at onset and during follow-up. During follow-up, children in the high group were more often smokers, less physically active, and more often had retinopathy than children in the low group (P < .01, .01, .03 respectively).

CONCLUSION: High HbA1c at onset was associated with high HbA1c during follow-up on a group level, but it cannot be used as a predictor of future metabolic control on an individual level. These results emphasize the important work done by the diabetes team in the first years after diagnosis. It is important to continuously set high goals for the achievement of tight metabolic control, in order to decrease the risk of microvascular complications.

BACKGROUND:

Several studies show that good metabolic control is important for children and adolescents with type 1 diabetes. In Sweden, there are large differences in mean haemoglobin A1c (HbA1c) in different hospitals and difficulties implementing national guidelines in everyday practice. This study shows how the participation in an improvement collaborative could facilitate improvements in the quality of care by paediatric diabetes teams. The Swedish paediatric diabetes quality registry, SWEDIABKIDS was used as a tool and resource for feedback and outcome measures.

METHODS:

Twelve teams at paediatric diabetes centres, caring for 30% (2302/7660) of patients in Sweden, participated in an 18-month quality improvement program. Each team defined treatment targets, areas needing improvement, and action plans. The main outcome was the centre patients' mean HbA1c levels, but other clinical variables and change concepts were also studied. Data from the previous six months were compared with the first six months after starting the program, and the long-term follow up after another eleven months.

RESULTS:

All centres reduced mean HbA1c during the second and third periods compared with the first. The mean reduction for all was 3·7 mmol/mol (p<0.001), compared with non-participating centres who improved their mean HbA1c with 1·7 mmol/mol during the same period. Many of the participating centres reduced the frequency of severe hypoglycaemia and/or ketoacidosis, and five centres reached their goal of ensuring that all patients had some sort of physical activity at least once weekly. Change concepts were, for example, improved guidelines, appointment planning, informing the patients, improving teamwork and active use of the registry, and health promotion activities.

CONCLUSIONS:

By involving paediatric diabetes teams in a quality improvement collaborative together with access to a quality register, the quality of paediatric diabetes care can improve, thereby contributing to a reduced risk of late complications for children and adolescents with diabetes.

Measuring the health-related quality of life (HRQOL) is one way to understand an individual’s perspective on health, and, more specifically, how type 1 diabetes (T1D) affects a child’s everyday life. Early detection of poor HRQOL is considered a crucial factor for identifying children who are at risk of psychosocial problems. The aim of this study was to describe the differences in the HRQOL of children with T1D according to age, gender, and metabolic control (HbA1c). Cross-sectional data were collected from children with T1D using the DISABKIDS Chronic Generic Measure-37 (DCGM-37) and the diabetes specific module (DM-10). Non-parametric tests were used to investigate differences. There were differences between girls and boys, and girls reported lower HRQOL than boys (HRQOL total score: mean 74 and 67 respectively; p = .005). Adolescents described more worries and fears about the future compared with younger children. Children with poor metabolic control reported a lower HRQOL than those with better metabolic control (HRQOL total score:mean 68 and 76 respectively; p = .006), but the social dimensions were not affected. The findings of the present study elucidate the importance for paediatric nurses to explore potential problems in children with T1D and use this knowledge in clinical practice. Assessment of the HRQOL can provide the patient’s perspective on the quality of diabetes care. The HRQOL is correlated with HbA1c, gender, and age, and the HRQOL as well as HbA1c levels should be regularly assessed to establish a comprehensive care for children with T1D.

Background

It has been stated that care for children with chronic health conditions tends to focus on condition-specific issues rather than how these children experience their health and everyday life functioning.

Aim

The aim of this study was to explore children's experiences about a structured assessment of health-related quality of life applied during a patient encounter.

Methods

Prior to the start of the study, a clinical intervention based on the questionnaire DISABKIDS Chronic Generic Measure (DCGM-37) was performed. A qualitative explorative design was chosen, and 25 children between 10–17 years of age were interviewed after the consultation at four different paediatric outpatient clinics. Data were analysed according to qualitative content analysis.

Results

The results were twofold: children experienced that the assessment was providing them with insights about their health, which motivated them to make lifestyle changes. When outcomes were discussed and requested, the children felt encouraged.

Conclusions

The use of an assessment of health-related quality of life may promote insights about health and encourage children with chronic health conditions to discuss their outcomes with healthcare professionals.

Background: Children and healthcare professionals should be provided with easy-to-use tools which could lead to actionable results.

Objectives: There is increasing interest in the use of patient reported outcomes to aid management of individual care; therefore, the use of health-related qualityof life (HRQOL) assessments during consultations need to be studied. The aim of this study was to explore how healthcare professionals use a HRQOL assessment tool during paediatric encounters.

Design: A descriptive, explorative design with a qualitative approach based on video recordings was chosen.

Methods: Twenty-one video recordings, from nine different healthcare professionals’ consultations where an assessment tool of HRQOL were used were analysed by content analysis.

Results: The healthcare professionals were using different strategies and when they combined these strategies three approaches emerged. The instructing approach was characterized by healthcare professionals giving a summary of the results, leading to children becoming passive bystanders in the encounter. Based on an inviting approach, the children’s perceptions of their situation were requested while the items were explored. This resulted in involving the children in the conversations. In the engaging approach, an open dialogue and a common interpretation were sought to guide further care which was interpreted as children becoming actively involved.

Conclusions: The child’s involvement could be facilitated depending on which approach is being used. When an inviting and engaging approach is used, actions in a non-linear set of interactions is co-produced with the child.

Relevance to practice: The use of an HRQOL assessment tool change the management during consultations and could promote child involvement dependent on which approach the healthcare professionals are using.

Many children and adolescents with type 1 diabetes (T1D) have difficulties reaching the national treatment goal for HbA1c (long-term blood sugar) which is associated with increased risk for complications. This makes it important to explore what patients and their caregivers describe important in coping with everyday life. The study has been conducted within a pediatric diabetes team in the south of Sweden. The aim was to explore how Experienced-Based Co-Design (EBCD) can be used to identify, test, and evaluate improvement efforts in order to support the family with a child with T1D. A modified variant of EBCD based on focus groups, workshops, and interviews with stakeholders was used. The improvement proposal parental coaching was tested and was appreciated by the participants. The qualitative content analysis of the interviews showed that the coaching program contributed to better confidence and self-efficacy. Both coaches and coachees described that the coaching contributed to better competence and a feeling of hope after attending the coach program. Experienced-Based Co-Design gave an opportunity to explore what?s important to improve, based on experiences and needs of several stakeholders.

Aims/hypothesis Some studies have revealed a relationship between Caesarean section (CS) and type 1 diabetes, while other studies have not. By using the Swedish paediatric quality register we investigated whether birth by CS is related to the risk of developing type 1 diabetes during childhood. Methods All children diagnosed with type 1 diabetes from 2000 to 2012 and included in the register (n= 9,376) were matched with four controls by year, day of birth, sex and county of birth from the Swedish Medical Birth Register. Results Overall, 13.5% of deliveries were by CS. By group, 14.7% of children who developed type 1 diabetes were delivered by CS compared with 13.3% of control children (p < 0.001). Mothers with diabetes more often gave birth by CS than mothers without diabetes (78.8% vs 12.7%, p < 0.001). In a logistic regression model adjusting for maternal age, maternal diabetes and BMI in early pregnancy, the OR for CS was 1.0. A child who developed type 1 diabetes and had a mother with type 1 diabetes at the time of delivery had the highest OR to have been born by CS. Children of mothers without diabetes, delivered by CS, had no increased risk of developing type 1 diabetes. Maternal diabetes was the strongest predictor of childhood diabetes (OR 3.4), especially if the mother had type 1 diabetes (OR 7.54). Conclusions/interpretation CS had no influence on the risk of type 1 diabetes during childhood or adolescence. However, maternal diabetes itself strongly increased the risk of offspring developing type 1 diabetes.

Background: The incidence of type 1 diabetes (T1D) is high in the Nordic countries with geographic differences between as well as within countries. Objective: To describe the geographical distribution of the incidence of T1D among children in four Nordic countries, an area where the population is considered genetically similar.

Methods: Data on children 0 to 14 years of age and diagnosed with T1D 2006 to 2011 was collected from four Nordic national pediatric quality diabetes registries. Data included year of diagnosis (2006-2011), sex, and age at diagnosis. Figures for number of children at risk during 2006 to 2011—as well as total population, proportion with foreign background and size of populated areas of geographic regions—were collected from official statistics.

Results: The total incidence during the study period for all four countries was 35.7/100 000 person years but differed between the countries (range 18.2-44.1; P <.001). The incidence difference between the countries was most obvious in the highest age group, 10 to 14 years of age, whereas there was no difference in the youngest age group 0 to 5 years of age. Iceland had similar incidence in the entire country, whereas the other countries had areas with different incidence. Densely populated areas, such as major cities, had the lowest incidence.

Conclusion: The incidence of T1D differed between the Nordic countries and also between the neighboring countries and generally decreased with population density. This indicates that environmental factors may contribute to the level of incidence of T1D.

BACKGROUND: To prospectively investigate if the grand mean HbA1c and the differences in mean HbA1c between centers in Sweden could be reduced, thereby improving care delivered by pediatric diabetes teams.

METHODS: We used an 18-month quality improvement collaborative (QIC) together with the Swedish pediatric diabetes quality registry (SWEDIABKIDS). The first program (IQ-1), started in April 2011 and the second (IQ-2) in April 2012; together they encompassed 70% of Swedish children and adolescents with diabetes.

RESULTS: The proportion of patients in IQ-1 with a mean HbA1c <7.4% (57 mmol/mol) increased from 26.4% before start to 35.9% at 36 months (P < .001), and from 30.2% to 37.2% (P < .001) for IQ-2. Mean HbA1c decreased in both participating and non-participating (NP) centers in Sweden, thereby indicating an improvement by a spatial spill over effect in NP centers. The grand mean HbA1c decreased by 0.45% (4.9 mmol/mol) during 36 months; at the end of 2014 it was 7.43% (57.7 mmol/mol) (P < .001). A linear regression model with the difference in HbA1c before start and second follow-up as dependent variable showed that QIC participation significantly decreased mean HbA1c both for IQ-1 and IQ-2. The proportion of patients with high HbA1c values (>8.7%, 72 mmol/mol) decreased significantly in both QICs, while it increased in the NP group.

CONCLUSIONS: The grand mean HbA1c has decreased significantly in Sweden from 2010 to 2014, and QICs have contributed significantly to this decrease. There seems to be a spatial spill-over effect in NP centers.

Introduction: Cytokines, chemokines, acute phase proteins (APP), adipocytokines and matrix metalloproteinases (MMP) are involved in different pathophysiological processes of inflammatory character. The role of the different immune markers and the peripheral immunoregulatory milieu in children diagnosed with type 1 diabetes (T1D) in combination with celiac disease (CD) is not fully understood and is not well studied. The purpose of the present study was therefore to acquire more knowledge and to gain deeper understanding on peripheral immunoregulatory milieu in children with T1D and/or CD.

Methods: The study included children diagnosed with T1D in combination with CD (n=18), children with T1D (n=27) or CD (n=16), and reference children (n=42).

Blood samples were collected, and serum stored in -80°C until analysis, avoiding multiple freeze-thaw cycles. The inflammatory cyto/chemokines (IL-1β, -5, -6, -8, -9, -10, -13, -15, -17A, -22, -25, -33, IFN-γ, TNF-α, G-CSF, MCP-1, MIP-1α, MIP-1β), diabetes related immune markers (visfatin, resistin), APP (procalcitonin (PTC), ferritin, tissue protein activator, fibrinogen, serum amyloid A) and matrix metalloproteinases (MMP-1, -2, -3) were analyzed with Luminex technique using Bio-Plex assays. Hierarchical cluster analysis was used to identify similarities/differences in immune profiles between children with double diagnosis and children with single diagnosis and reference children. Mann-Whitney U test was used for comparison of the different diagnosis groups within the clusters and whole cohort, respectively.

Results: The largest cluster included 75% of the participants and the diagnose distribution in the cluster were very similar to the distribution in the whole study cohort. The remaining 25% were divided in two smaller clusters representing 15.5% and 6.5% respectively. The major finding of this study showed that children with double diagnosis had (1) lower serum levels of IL-22, MCP-1, PCT, visfatin and MMP-2 compared to children with T1D; and (2) lower serum levels of the APC associated chemokine MIP-1α compared to reference children, observed in the main cluster. Most of these observations were also seen in the whole cohort.  

Conclusion: Our observations indicate decreased serum levels of IL-22, MIP-1α, MCP-1, PCT, visfatin and MMP-2 in children diagnosed with T1D in combination with CD. These results indicate a suppressed immune profile including Th17 cytokines, chemokines, acute phase proteins, diabetes-related and matrix metalloproteinase immune markers. Functional studies of the involved immune cells (CD4⁺ Treg, CD8⁺ Treg, NK-cells and dendritic cells) could contribute to elucidate the heterogeneous immunological processes in children with more than one autoimmune disease.

Objective

To explore the relationship between certain clinical variables and metabolic HbA1c at diagnosis correlated to HbA1c at follow-up (p < 0.001). There was a clear gender difference regarding HbA1c. Girls had higher values both at diagnosis and at follow-up (p < 0.001). Girls also had lower BMI and pH at diagnosis than boys (p < 0.001). In contrast, girls with the highest body mass index (BMI) at follow-up had higher mean HbA1c at follow-up in 2010 (p < 0.001). Having a mother and/or a father with high BMI implied higher HbA1c at diagnosis (p < 0.003).

Conclusions

HbA1c at diagnosis seems to predict metabolic control years later. There is a gender difference at diagnosis as female patients have higher HbA1c than males at diagnosis as well as at follow up. As metabolic control is very much correlated to complications there is a need to early identify patients at risk of poor metabolic control. Even though we do not know whether a high HbA1c level is mainly due to severity of the disease or to behavioral patterns, new ways to treat and support these children, especially girls, are needed.

Type 1 diabetes (T1D) and coeliac disease are both characterized by an autoimmune feature. As T1D and coeliac disease share the same risk genes, patients risk subsequently developing the other disease. This study aimed to investigate the expression of T helper (Th), T cytotoxic (Tc) and regulatory T cells (T_reg) in T1D and/or coeliac disease children in comparison to healthy children. Subgroups of T cells (Th:CD4⁺ or Tc:CD8⁺); naive (CD27⁺CD28⁺CD45RA⁺CCR7⁺), central memory (CD27⁺CD28⁺CD45RA^-CCR7⁺), effector memory (early differentiated; CD27⁺CD28⁺CD45RA^-CCR7^- and late differentiated; CD27^-CD28^-CD45RA^-CCR7^-), terminally differentiated effector cells (TEMRA; CD27^-CD28^-CD45RA⁺CCR7^-) and T_reg (CD4⁺CD25⁺FOXP3⁺CD127^-) cells, and their expression of CD39, CD45RA, CD101 and CD129, were studied by flow cytometry in T1D and/or coeliac disease children or without any of these diseases (reference group). Children diagnosed with both T1D and coeliac disease showed a higher percentage of TEMRA CD4⁺ cells (P<0·05), but lower percentages of both early and late effector memory CD8⁺ cells (P<0·05) compared to references. Children with exclusively T1D had lower median fluorescence intensity (MFI) of forkhead box protein 3 (FoxP3) (P<0·05) and also a lower percentage of CD39⁺ and CD45RA⁺ within the T_reg population (CD4⁺CD25⁺FOXP3⁺CD127^-) (P<0·05). Children with exclusively coeliac disease had a higher MFI of CD101 (P<0·01), as well as a higher percentage of CD129⁺ (P<0·05), in the CD4⁺CD25^hi lymphocyte population, compared to references. In conclusion, children with combined T1D and coeliac disease have a higher percentage of differentiated CD4⁺ cells compared to CD8⁺ cells. T1D children show signs of low CD39⁺/CD45RA⁺ T_reg cells that may indicate loss of suppressive function. Conversely, children with coeliac disease show signs of CD101⁺/CD129⁺ T_reg cells that may indicate suppressor activity.