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BACKGROUND/OBJECTIVES: Government guidance promote benchmarking comparing quality of care including both clinical values and patient reported outcome measures in young persons with type 1 diabetes. The aim was to test if the Nordic DISABKIDS health-related quality of life (HrQoL) modules were construct valid and measurement comparable within the three Nordic countries. METHODS: Data from three DISABKIDS validation studies in Sweden, Denmark, and Norway were compared using Rasch and the graphical log-linear Rasch modeling. Monte Carlo methods were used to estimate reliability coefficient and target was defined as the point with the lowest SE of the mean. Self-report data were available from 99 Danish (8-18 years), 103 Norwegian (7-19 years), and 131 Swedish (8-18 years) young people. RESULTS: For the DISABKIDS higher scores on most subscales were noted in the Norwegian population. The Swedish sample had a significantly higher score on the "Diabetes treatment" subscale and scores closer to optimal target than the other countries. For each country, construct validity and sensitivity were acceptable when accounting for differential item function (DIF) and local dependency (LD). Less LD and DIF were found if only Denmark and Norway were included. The combined model was reliable; however, some differences were noted in the scale translations relating to the stem and response alternatives, which could explain the discrepancies. CONCLUSION: The Nordic versions of the DISABKIDS questionnaires measures valid and reliable HrQoL both within and between countries when adjusted for DIF and LD. Adjusting the Likert scales to the same respond categories may improve comparability.
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Benchmarking , Diabetes Mellitus Tipo 1 , Medición de Resultados Informados por el Paciente , Garantía de la Calidad de Atención de Salud , Adolescente , Adulto , Benchmarking/normas , Niño , Dinamarca/epidemiología , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/epidemiología , Diabetes Mellitus Tipo 1/psicología , Diabetes Mellitus Tipo 1/terapia , Evaluación de la Discapacidad , Femenino , Geografía , Humanos , Masculino , Noruega/epidemiología , Psicometría/métodos , Psicometría/normas , Garantía de la Calidad de Atención de Salud/métodos , Garantía de la Calidad de Atención de Salud/normas , Reproducibilidad de los Resultados , Encuestas y Cuestionarios/normas , Suecia/epidemiología , Adulto JovenRESUMEN
Importance: Type 1 diabetes has been associated with cardiovascular disease and late complications such as retinopathy and nephropathy. However, it is unclear whether there is an association between type 1 diabetes and school performance in children. Objective: To compare standardized reading and mathematics test scores of schoolchildren with type 1 diabetes vs those without diabetes. Design, Setting, and Participants: Population-based retrospective cohort study from January 1, 2011, to December 31, 2015 (end date of follow-up), including Danish public schoolchildren attending grades 2, 3, 4, 6, and 8. Test scores were obtained in math (n = 524â¯764) and reading (n = 1â¯037â¯006). Linear regression models compared outcomes with and without adjustment for socioeconomic characteristics. Exposures: Type 1 diabetes. Main Outcomes and Measures: Primary outcomes were pooled test scores in math and reading (range, 1-100). Results: Among 631â¯620 included public schoolchildren, the mean (SD) age was 10.31 (SD, 2.42) years, and 51% were male; 2031 had a confirmed diagnosis of type 1 diabetes. Overall, the mean combined score in math and reading was 56.11 (SD, 24.93). There were no significant differences in test scores found between children with type 1 diabetes (mean, 56.56) and children without diabetes (mean, 56.11; difference, 0.45 [95% CI, -0.31 to 1.22]). The estimated difference in test scores between children with and without type 1 diabetes from a linear regression model with adjustment for grade, test topic, and year was 0.24 (95% CI, -0.90 to 1.39) and 0.45 (95% CI, -0.58 to 1.49) with additional adjustment for socioeconomic status. Conclusions and Relevance: Among Danish public schoolchildren, there was no significant difference in standardized reading and mathematics test scores of children with type 1 diabetes compared with test scores of children without diabetes.
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Diabetes Mellitus Tipo 1/psicología , Evaluación Educacional , Matemática , Lectura , Adolescente , Estudios de Casos y Controles , Niño , Dinamarca , Diabetes Mellitus Tipo 1/sangre , Diabetes Mellitus Tipo 1/etnología , Escolaridad , Femenino , Hemoglobina Glucada/análisis , Humanos , Masculino , Estudios Retrospectivos , Factores SocioeconómicosRESUMEN
BACKGROUND: Managing the chronic illness type 1 diabetes (T1D) is extremely demanding, especially during adolescence. Self-efficacy is belief in one's own capabilities and this is crucial for diabetes management. Having a valid method for measuring self-efficacy is important. OBJECTIVE: Our aims were to psychometrically validate a Danish version of the self-efficacy in diabetes management (SEDM) questionnaire, and to examine the relationship between background variables and self-efficacy. METHODS: All Danish adolescents with T1D (n = 1075) were invited to participate in our study. In total, 689 agreed to participate and 602 completed the study. Data were collected using a web-based survey. All participants were asked to provide a blood sample for HbA1c measurement. Graphical log-linear Rasch modeling (GLLRM) was used to validate the questionnaire and its reliability was assessed using Monte Carlo simulation. RESULTS: We found the questionnaire to be valid and reliable, but it had a dual structure that suggested a need for 2 separate subscales. One subscale related to practical (SEDM1) and the other to emotional (SEDM2) aspects of diabetes management. Both subscales were targeted toward adolescents with lower self-efficacy and were associated with HbA1c. SEDM1 was influenced by treatment modality and age. In SEDM2 we found an interaction between age and sex. CONCLUSION: The Danish version of the SEDM questionnaire should be divided into two parts, each with a valid and reliable subscale for self-efficacy measurement. The relationship between self-efficacy and age seems to differ between boys and girls.
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Diabetes Mellitus Tipo 1/psicología , Autoeficacia , Automanejo , Adolescente , Factores de Edad , Niño , Preescolar , Diabetes Mellitus Tipo 1/sangre , Diabetes Mellitus Tipo 1/tratamiento farmacológico , Femenino , Hemoglobina Glucada/metabolismo , Humanos , Hipoglucemiantes/administración & dosificación , Insulina/administración & dosificación , Masculino , Reproducibilidad de los Resultados , Factores Sexuales , Encuestas y CuestionariosRESUMEN
BACKGROUND: Type 1 Diabetes (T1D) has a negative impact on psychological and overall well-being. Screening for Health-related Quality of Life (HrQoL) and addressing HrQoL issues in the clinic leads to improved well-being and metabolic outcomes. The aim of this study was to translate the generic and diabetes-specific validated multinational DISABKIDS® questionnaires into Danish, and then determine their validity and reliability. METHODS: The questionnaires were translated using a validated translation procedure and completed by 99 children and adolescents from our diabetes-department; all diagnosed with T1D and were aged between 8 and 18 years old. The Rasch and the graphical log linear Rasch model (GLLRM) were used to determine validity. Monte Carlo methods and Cronbach's α were used to confirm reliability. RESULTS: The data did not fit a pure Rasch model but did fit a GLLRM when item six in the independence scale is excluded. The six subscales measure different aspects of HrQoL indicating that all the subscales are necessary. The questionnaire shows local dependency between items and differential item functioning (DIF). Therefore age, gender, and glycated hemoglobin (HbA1c) levels must be taken into account when comparing HrQoL between groups. CONCLUSIONS: The Danish versions of the DISABKIDS® chronic-generic and diabetes-specific modules provide valid and objective measurements with adequate reliability. These Danish versions are useful tools for evaluating HrQoL in Danish patients with T1D. However, guidelines on how to manage DIF and local independence will be required, and item six should be rephrased.
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Diabetes Mellitus Tipo 1/psicología , Estado de Salud , Calidad de Vida/psicología , Encuestas y Cuestionarios/normas , Adolescente , Niño , Dinamarca , Femenino , Humanos , Masculino , Psicometría , Reproducibilidad de los Resultados , Traducción , Resultado del TratamientoRESUMEN
AIM: Gluten-free diet has shown promising effects in preventing type 1 diabetes (T1D) in animals as well as beneficial effects on the immune system. Gluten-free diet at diabetes onset may alter the natural course and outcome of autoimmune diseases such as T1D. METHODS: In a 12-month study, 15 children newly diagnosed with T1D were instructed to follow a gluten-free diet. Questionnaires were used to evaluate adherence to the gluten-free diet. Partial remission (PR) was defined by insulin dose-adjusted A1c (IDAA1c) ≤9 or stimulated C-peptide (SCP) >300 pmol/L measured 90 min after a liquid mixed meal at the inclusion, six and 12 months after onset. The intervention group was compared with two previous cohorts. Linear mixed models were used to estimate differences between cohorts. RESULTS: After 6 months, more children on a gluten-free diet tended to have SCP values above 300 pmol/L compared to the European cohort (p = 0.08). The adherence to a gluten-free diet decreased during the 12-month study period. After 1 year there was no difference in SCP levels or percentage in remission according to SCP (p > 0.1). Three times as many children were still in PR based on IDAA1c (p < 0.05). Twelve months after onset HbA1c were 21 % lower and IDAA1c >1 unit lower in the cohort on a gluten-free diet compared to the two previous cohorts (p < 0.001). CONCLUSION: Gluten-free diet is feasible in highly motivated families and is associated with a significantly better outcome as assessed by HbA1c and IDAA1c. This finding needs confirmation in a randomized trial including screening for quality of life. (Clinicaltrials.gov number NCT02284815).
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The incidence of type 1 diabetes (T1D) has during the last few decades been increasing in children and juveniles. Multi-factorial courses combining genetic disposition and environmental factors might be in play, and through the years, there has been a mounting interest in the innate immune system's role in the development of T1D. The aim of this study was to determine mannose binding lectin (MBL) levels in newly diagnosed children with T1D (n=481) over a period of 10 years (1997-2005) and to compare these levels with corresponding levels in their healthy siblings (n=479). Furthermore, the aims were to evaluate if MBL-levels in patients and siblings were influenced by season, age autoimmunity and/or changed over time. The study found that MBL levels differed between patients and their healthy siblings when adjusted for age, gender, season and period. More patients than siblings had MBL levels above 0.8 µg/ml, associated with high producing MBL genotypes, and the elevated MBL levels were associated with high levels of four T1D related cytokines (IL-1ß, IL-12, IL-18 and TNF-α). MBL levels increased during the study period and siblings had seasonal variance in concentrations with the lowest level during wintertime (Dec-Feb). In conclusion, more patients than siblings had a high MBL level, and high levels of MBL were related to high levels of T1D specific cytokines, supporting a role of the innate immune system and MBL on the risk of developing T1D.
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Citocinas/inmunología , Diabetes Mellitus Tipo 1/sangre , Diabetes Mellitus Tipo 1/epidemiología , Diabetes Mellitus Tipo 1/inmunología , Lectina de Unión a Manosa/sangre , Adolescente , Autoanticuerpos/sangre , Niño , Preescolar , Citocinas/sangre , Femenino , Humanos , Lactante , Estudios Longitudinales , Masculino , Estaciones del Año , Hermanos , Factores de TiempoRESUMEN
A 5-year and 10-month old boy was diagnosed with classical type 1 diabetes mellitus (T1DM) without celiac disease. He started on a gluten-free diet after 2-3 week without need of insulin treatment. At the initiation of gluten-free diet, HbA1c was 7.8% and was stabilised at 5.8%-6.0% without insulin therapy. Fasting blood glucose was maintained at 4.0-5.0 mmol/l. At 16 months after diagnosis the fasting blood glucose was 4.1 mmol/l and after 20 months he is still without daily insulin therapy. There was no alteration in glutamic acid decarboxylase positivity. The gluten-free diet was safe and without side effects. The authors propose that the gluten-free diet has prolonged remission in this patient with T1DM and that further trials are indicated.