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1.
Diabet Med ; 41(3): e15219, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37660355

RESUMO

AIM: To better understand the prevalence of self-reported psychosocial burdens and the unmet needs identified by people with diabetes in relation to routine diabetes visits. METHODS: An English language, online survey was distributed via social media, key stakeholder networks, charity and advocacy groups to adults with type 1 diabetes or type 2 diabetes. Survey items were designed by members of the FDA RESCUE Collaborative Community Governing Committee prior to pilot testing with potential participants. Descriptive statistical analyses were conducted, as well as thematic analyses on free-text responses using NVivo v14. RESULTS: Four hundred and seventy-eight participants completed the survey: 373 (78%) had type 1 diabetes, 346 (73%) identified as a woman and 433 (91%) were white. Most participants had experienced self-reported (rather than diagnosed) anxiety and depression (n = 323 and n = 313, respectively), as well as fear of low blood sugars (n = 294), low mood (n = 290) and diabetes-related distress (n = 257). Sixty-eight percent reported that diabetes had negatively affected self-esteem, 62% reported the feelings of loneliness, but 93% reported that friends/family/work colleagues were supportive when needed. Two hundred and seventy-two percent (57%) reported that their diabetes team had never raised the topic of mental health. The overwhelming majority stated that the best thing their diabetes team could do to help was to simply ask about mental well-being, listen with empathy and without judgement, and practice skills to understand psychosocial issues in diabetes. CONCLUSION: Integrating psychosocial discussions and support within routine healthcare visits is crucial to improve outcomes for people with diabetes. Such a biopsychosocial model of healthcare has long been advocated by regulatory bodies.


Assuntos
Diabetes Mellitus Tipo 1 , Diabetes Mellitus Tipo 2 , Adulto , Feminino , Humanos , Diabetes Mellitus Tipo 1/epidemiologia , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 2/epidemiologia , Diabetes Mellitus Tipo 2/terapia , Emoções , Ansiedade/epidemiologia
2.
Diabet Med ; 41(7): e15325, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38551326

RESUMO

OBJECTIVE: To examine the cross-sectional associations between diabetes distress, BMI (zBMI; BMI z-score), objectively measured mean daily blood glucose readings and insulin boluses administered, and A1C in adolescents with type 1 diabetes (T1D) using insulin pumps. METHODS: T1D self-management behaviour data were downloaded from adolescents' (N = 79) devices and mean daily frequency of blood glucose readings and insulin boluses were calculated. Diabetes distress was measured (Problem Areas in Diabetes-Teen questionnaire [PAID-T]), A1C collected, and zBMI calculated from height and weight. Three multiple linear regressions were performed with blood glucose readings, insulin boluses, and A1C as the three dependent variables and covariates (age, T1D duration), zBMI, diabetes distress, and the diabetes distress x zBMI interaction as independent variables. RESULTS: Participants (55.7% female) were 14.9 ± 1.9 years old with T1D for 6.6 ± 3.4 years. zBMI moderated the relationship between diabetes distress and mean daily insulin boluses administered (b = -0.02, p = 0.02); those with higher zBMI and higher diabetes distress administered fewer daily insulin boluses. zBMI was not a moderator of the association between diabetes distress and blood glucose readings (b = -0.01, p = 0.29) or A1C (b = 0.002, p = 0.81). CONCLUSIONS: Using objective behavioural data is useful for identifying how adolescent diabetes distress and zBMI affect daily bolusing behaviour amongst adolescent insulin pump users. Although distinct interventions exist to improve T1D self-management or diabetes distress, none addresses them together while considering zBMI. Decreasing diabetes distress could be especially important for youth with high zBMI.


Assuntos
Índice de Massa Corporal , Diabetes Mellitus Tipo 1 , Hemoglobinas Glicadas , Insulina , Autogestão , Humanos , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/complicações , Diabetes Mellitus Tipo 1/sangue , Diabetes Mellitus Tipo 1/tratamento farmacológico , Adolescente , Feminino , Masculino , Estudos Transversais , Hemoglobinas Glicadas/metabolismo , Hemoglobinas Glicadas/análise , Insulina/administração & dosagem , Insulina/uso terapêutico , Sistemas de Infusão de Insulina , Hipoglicemiantes/uso terapêutico , Hipoglicemiantes/administração & dosagem , Glicemia/metabolismo , Glicemia/análise , Automonitorização da Glicemia , Angústia Psicológica , Estresse Psicológico/etiologia , Estresse Psicológico/epidemiologia
3.
Int J Behav Med ; 31(1): 64-74, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36745325

RESUMO

BACKGROUND: This study aims to examine the relationship between parents' fear of hypoglycemia (FH) over a 1-year period and child glucose metrics in 126 families of youth recently diagnosed with type 1 diabetes (T1D). METHODS: Parents completed the Hypoglycemia Fear Survey for Parents (HFS-P) and uploaded 14 days of glucose data at a baseline, 6-month, and 12-month assessment. RESULTS: Parents' HFS-P total and worry scores increased to a clinically meaningful degree from baseline to 6-month assessment, while multilevel models revealed within- and between-person variability in parents' HFS-P worry and behavior scores over time associated with child glycemia. Specifically, a significant negative relationship for within-person worry scores suggested that when parents reported higher than their average worry scores, their children recorded fewer glucose values in the target range, while within-person behavior scores suggested that when parents reported lower than their average behavior scores, their children recorded more values above the target range. There was also a negative relationship for between-person behavior scores with child glycated hemoglobin and a positive relationship for between-person behavior scores with child glucose values in the target range. CONCLUSIONS: In the recent-onset period of T1D, parental FH worry and behavior associated with child glycemia possibly due to changes in parents' perceptions of their child's hypoglycemia risk. The clinically meaningful increases in parent FH in the recent-onset period and the negative association for between-person behavior scores with child glycated hemoglobin suggest that clinics should consider screening parents for FH, especially among parents of children with lower glycemic levels.


Assuntos
Diabetes Mellitus Tipo 1 , Hipoglicemia , Criança , Humanos , Adolescente , Hemoglobinas Glicadas , Controle Glicêmico , Hipoglicemia/complicações , Medo , Glucose , Pais
4.
Clin Diabetes ; 41(4): 510-517, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37849515

RESUMO

Successful transition from a pediatric to adult diabetes care provider is associated with reduced ambulatory diabetes care visits and increased acute complications. This study aimed to determine whether the degree of independence in diabetes care and the rate of acute complications after transition to adult diabetes care were associated with individuals' student or employment status. Nonstudents were found to be less likely than students to be independent with diabetes care, and employed nonstudents were at lower risk of diabetic ketoacidosis than unemployed nonstudents. Additional support may be needed for young adults who are not students or are unemployed to improve independence and reduce the risk for acute complications.

5.
Pediatr Diabetes ; 23(4): 433-438, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35218124

RESUMO

BACKGROUND: An increase in newly diagnosed type 1 diabetes (T1D) has been posited during the COVID-19 pandemic, but data are conflicting. We aimed to determine trends in newly diagnosed T1D and severity of presentation at diagnosis for pediatric and adolescent patients during COVID-19 (2020) as compared to the previous year (2019) in a multi-center analysis across the United States. METHODS: This retrospective study from seven centers in the T1D Exchange Quality Improvement Collaborative (T1DX-QI) included data on new onset T1D diagnosis and proportion in DKA at diagnosis from January 1 to December 31, 2020, compared to the prior year. Chi-square tests were used to compare differences in patient characteristics during the pandemic period compared to the prior year. RESULTS: Across seven sites, there were 1399 newly diagnosed T1D patients in 2020, compared to 1277 in 2019 (p = 0.007). A greater proportion of newly diagnosed patients presented in DKA in 2020 compared to 2019 (599/1399(42.8%) vs. 493/1277(38.6%), p = 0.02), with a higher proportion presenting with severe DKA (p = 0.01) as characterized by a pH <7.1 and/or bicarbonate of <5 mmol/L. Monthly data trends demonstrated a higher number of new T1D diagnoses over the spring and summer months (March to September) of 2020 compared to 2019 (p < 0.001). CONCLUSIONS: We found an increase in newly diagnosed T1D and a greater proportion presenting in DKA at diagnosis during the COVID-19 pandemic compared to the prior year. Future longitudinal studies are needed to confirm these findings with population level data and determine the long-term impact of COVID-19 on diabetes trends.


Assuntos
COVID-19 , Diabetes Mellitus Tipo 1 , Cetoacidose Diabética , Adolescente , COVID-19/epidemiologia , Criança , Diabetes Mellitus Tipo 1/complicações , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/epidemiologia , Cetoacidose Diabética/diagnóstico , Cetoacidose Diabética/epidemiologia , Humanos , Pandemias , Estudos Retrospectivos , Estados Unidos/epidemiologia
6.
Pediatr Diabetes ; 23(2): 248-257, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34779100

RESUMO

OBJECTIVE: The prevalence of depression among adolescents with type 1 diabetes is estimated to be 2-3 times higher than in the general population. In adults with type 1 diabetes and depression, short-term outcomes are worse compared to individuals just diagnosed with type 1 diabetes. This study aims to determine if depressive symptom endorsement is associated with glycemic outcomes and short-term complications in adolescents with type 1 diabetes. RESEARCH DESIGN AND METHODS: Analysis was conducted using electronic medical records from the T1D Exchange Quality Improvement Collaborative. Adolescents with type 1 diabetes, aged 12-18, receiving treatment in a diabetes clinic who had been screened for depression with the PHQ-9 between 2016 and 2018 were eligible for inclusion. Individuals must have also had HbA1c data available from the day of depression screening and from 10 to 24 weeks after screening; the final sample size was 1714. RESULTS: Almost 30% of adolescents endorsed mild or greater (PHQ-9 ≥ 5) depressive symptoms. Endorsement of mild or greater depressive symptoms was associated with an 18% increased risk of an HbA1c ≥7.5% and a 42% increased risk of an HbA1c ≥9.0% on the day of screener administration. Depressive symptom endorsement was also associated with an 82% increased risk for DKA. CONCLUSIONS: This study suggests that depression symptoms are associated with an increased risk for elevated HbA1c and short-term complications. With the rising incidence of type 1 diabetes in youth, routine screening, and appropriate management of depression is needed.


Assuntos
Depressão/complicações , Diabetes Mellitus Tipo 1/psicologia , Controle Glicêmico/psicologia , Adolescente , Criança , Depressão/psicologia , Feminino , Controle Glicêmico/métodos , Controle Glicêmico/normas , Humanos , Masculino , Programas de Rastreamento/métodos , Programas de Rastreamento/estatística & dados numéricos , Questionário de Saúde do Paciente/estatística & dados numéricos , Prevalência
7.
Pediatr Diabetes ; 23(6): 627-640, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35561091

RESUMO

BACKGROUND: An estimated 1.1 million children and adolescents aged under 20 years have type 1 diabetes worldwide. Principal investigators from seven well-established longitudinal pediatric diabetes registries and the SWEET initiative have come together to provide an international collaborative perspective and comparison of the registries. WORK FLOW: Information and data including registry characteristics, pediatric participant clinical characteristics, data availability and data completeness from the Australasian Diabetes Data Network (ADDN), Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids), Diabetes prospective follow-up registry (DPV), Norwegian Childhood Diabetes Registry (NCDR), National Paediatric Diabetes Audit (NPDA), Swedish Childhood Diabetes Registry (Swediabkids), T1D Exchange Quality Improvement Collaborative (T1DX-QI), and the SWEET initiative was extracted up until 31 December 2020. REGISTRY OBJECTIVES AND OUTCOMES: The seven diabetes registries and the SWEET initiative collectively show data of more than 900 centers and around 100,000 pediatric patients, the majority with type 1 diabetes. All share the common objectives of monitoring treatment and longitudinal outcomes, promoting quality improvement and equality in diabetes care and enabling clinical research. All generate regular benchmark reports. Main differences were observed in the definition of the pediatric population, the inclusion of adults, documentation of CGM metrics and collection of raw data files as well as linkage to other data sources. The open benchmarking and access to regularly updated data may prove to be the most important contribution from registries. This study describes aspects of the registries to enable future collaborations and to encourage the development of new registries where they do not exist.


Assuntos
Diabetes Mellitus Tipo 1 , Adolescente , Adulto , Idoso , Benchmarking , Criança , Diabetes Mellitus Tipo 1/epidemiologia , Diabetes Mellitus Tipo 1/terapia , Humanos , Estudos Prospectivos , Melhoria de Qualidade , Sistema de Registros
8.
J Pediatr Psychol ; 47(2): 195-205, 2022 02 14.
Artigo em Inglês | MEDLINE | ID: mdl-34718681

RESUMO

OBJECTIVE: A previously published exploratory factor analysis suggested that the Hypoglycemia Fear Survey-Child and Parent Versions, is comprised of three subscales: Maintain High Blood Glucose, Helplessness/Worry About Low Blood Glucose, and Worry About Negative Social Consequences. The primary aim of this study was to confirm this three-factor model with a clinical population of adolescents with type 1 diabetes (T1D) and their caregivers. METHODS: Participants included N = 1,035 youth ages 10-17.99 years with T1D, and their female (N = 835) and/or male (N = 326) caregivers who completed the Hypoglycemia Fear Survey independently during a routine medical appointment. We conducted confirmatory factor analysis and examined reliability of the Hypoglycemia Fear Survey and its associations with demographics and clinical outcomes (e.g., mean blood glucose, glycemic control). RESULTS: Confirmatory factor analysis supported the three-factor model in youth and female and male caregivers. The internal consistencies for Maintain High Blood Glucose, Helplessness/Worry About Low Blood Glucose, and Worry About Negative Social Consequences were acceptable. The majority of demographic and clinical outcome variables correlated as hypothesized with the three subscales. CONCLUSIONS: Using a large clinical sample of adolescents with T1D and their caretakers, we confirmed the three-factor model for the Hypoglycemia Fear Survey, which is sufficiently reliable to be used in a clinical setting. Important areas of future research include examining moderators for the effect of fear of hypoglycemia on clinical outcomes, and possible inclusion of items related to modern diabetes devices.


Assuntos
Diabetes Mellitus Tipo 1 , Hipoglicemia , Adolescente , Glicemia , Cuidadores , Criança , Medo , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes
9.
Clin Diabetes ; 40(4): 449-457, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36385972

RESUMO

Individuals with type 1 diabetes have higher rates of depression and suicidal ideation than the general population, and symptoms of depression are often associated with higher A1C levels and complications. This study evaluated mental health follow-up rates in youth and young adults with type 1 diabetes who screened positive for depressive symptoms or suicidal ideation and identified differences between those who obtained follow-up mental health care and those who did not. Specifically, males were less likely to obtain follow-up, and those who had mental health follow-up had decreasing A1C over the following year. These findings suggest increased assistance and monitoring are needed to ensure follow-up mental health care is obtained.

10.
Clin Diabetes ; 41(1): 68-75, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36714245

RESUMO

The optimal care of type 1 diabetes involves consistent glycemic management to avoid short- and long-term complications. However, despite advancements in diabetes technology and standards, achieving adequate glycemic levels in children and adolescents remains a challenge. This study aimed to identify factors associated with achieving the recommended A1C target of <7% from the United States-based multicenter T1D Exchange Quality Improvement Collaborative cohort, including 25,383 children and adolescents living with type 1 diabetes.

11.
Diabet Med ; 38(9): e14637, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34240466

RESUMO

OBJECTIVE: To explore glycated haemoglobin (HbA1c) patterns in 5- to 9-year-olds in the recent-onset period of type 1 diabetes and identify parent psychosocial factors that may predict children's HbA1c trajectory using a prospective, longitudinal design. RESEARCH DESIGN AND METHODS: We measured family demographics and parent psychosocial factors at baseline. We collected HbA1c levels from children every 3 months for up to 30 months. Deriving several features around HbA1c trends, we used k-means clustering to group trajectories and linear and logistic regressions to identify parent psychosocial predictors of children's HbA1c trajectories. RESULTS: The final cohort included 106 families (48 boys, mean child age 7.50 ± 1.35 years and mean diabetes duration 4.71 ± 3.19 months). We identified four unique HbA1c trajectories in children: high increasing, high stable, intermediate increasing and low stable. Compared to a low stable trajectory, increasing parent-reported hypoglycaemia fear total score was associated with decreased odds of having a high stable or intermediate increasing trajectory. Increasing parent-reported diabetes-specific family conflict total score was associated with increased odds of having a high stable or intermediate increasing trajectory. CONCLUSIONS: We are the first to identify distinct HbA1c trajectories in 5- to 9-year-olds with recent-onset type 1 diabetes as well as parent psychosocial factors that may predict high stable or increasing trajectories and could represent future treatment targets.


Assuntos
Glicemia/metabolismo , Diabetes Mellitus Tipo 1/sangue , Hemoglobinas Glicadas/metabolismo , Medição de Risco/métodos , Biomarcadores/sangue , Criança , Pré-Escolar , Diabetes Mellitus Tipo 1/epidemiologia , Feminino , Seguimentos , Humanos , Incidência , Masculino , Estudos Prospectivos , Fatores de Risco , Fatores de Tempo , Estados Unidos/epidemiologia
12.
Pediatr Diabetes ; 22(5): 787-795, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33838078

RESUMO

For youth with type 1 diabetes (T1D), the early adolescent period is associated with worsening diabetes management and high rates of negative psychosocial issues, including depressive symptoms and family conflict. Alternative clinical models may help improve both diabetes and psychosocial outcomes. Our study aims to investigate whether Team Clinic, a shared medical appointment model developed specifically for adolescents with T1D, will improve psychosocial outcomes for middle school-aged youth. Youth with T1D, 11-13 years of age, and their caregivers, participated in a randomized controlled trial comparing Team Clinic to traditional clinic visits (control group). Diabetes characteristics were obtained at every visit. Participants and caregivers completed depression screening and family conflict questionnaires at baseline and end of study. Changes in mean scores on clinical and psychosocial outcomes from baseline to end of study were compared between groups using linear mixed-effects models. Eighty-six youth (51% female; 74% White; 10% Hispanic) completed at least one visit during the 12-month study period. At the end of the study, control group participants reported increases in Emotional Problems compared to Team Clinic participants, including higher levels of Negative Mood/Physical Symptoms (p = 0.02). Team Clinic participants reported reduced family conflict surrounding diabetes at study end, compared to control group participants (p = 0.03). Caregivers did not report change in depressive symptoms or family conflict during the study. Hemoglobin A1C levels did not change over time in either group. Participation in Team Clinic was associated with improved psychosocial outcomes in middle school-aged participants with T1D.


Assuntos
Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Consultas Médicas Compartilhadas , Adolescente , Criança , Diabetes Mellitus Tipo 1/sangue , Diabetes Mellitus Tipo 1/epidemiologia , Conflito Familiar/psicologia , Feminino , Hemoglobinas Glicadas/análise , Humanos , Masculino , Participação do Paciente/psicologia , Funcionamento Psicossocial , Sistemas de Apoio Psicossocial , Consultas Médicas Compartilhadas/estatística & dados numéricos , Inquéritos e Questionários , Resultado do Tratamento , Estados Unidos/epidemiologia
13.
Clin Diabetes ; 39(3): 264-271, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-34421201

RESUMO

Continuous glucose monitoring (CGM) use is associated with improved A1C outcomes and quality of life in adolescents and young adults with diabetes; however, CGM uptake is low. This article reports on a quality improvement (QI) initiative of the T1D Exchange Quality Improvement Collaborative to increase CGM use among patients in this age-group. Ten centers participated in developing a key driver diagram and center-specific interventions that resulted in an increase in CGM use from 34 to 55% in adolescents and young adults over 19-22 months. Sites that performed QI tests of change and documented their interventions had the highest increases in CGM uptake, demonstrating that QI methodology and sharing of learnings can increase CGM uptake.

14.
Clin Diabetes ; 39(3): 278-283, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-34421203

RESUMO

Health care inequities among racial and ethnic groups remain prevalent. For people with type 1 diabetes who require increased medical access and care, disparities are seen in access to care and health outcomes. This article reports on a study by the T1D Exchange Quality Improvement Collaborative evaluating differences in A1C, diabetic ketoacidosis (DKA), severe hypoglycemia, and technology use among racial and ethnic groups. In a diverse cohort of nearly 20,000 children and adults with type 1 diabetes, A1C was found to differ significantly among racial and ethnic groups. Non-Hispanic Blacks had higher rates of DKA and severe hypoglycemia and the lowest rate of technology use. These results underscore the crucial need to study and overcome the barriers that lead to inequities in the care and outcomes of people with type 1 diabetes.

15.
Am J Med Genet A ; 182(1): 162-168, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31729162

RESUMO

Megalencephaly-capillary malformation syndrome (MCAP) is a brain overgrowth disorder characterized by cortical malformations (specifically polymicrogyria), vascular anomalies, and segmental overgrowth secondary to somatic activating mutations in the PI3K-AKT-MTOR pathway (PIK3CA). Cases of growth failure and hypoglycemia have been reported in patients with MCAP, raising the suspicion for unappreciated growth hormone (GH) deficiency. Here we report an observational multicenter study of children with MCAP and GH deficiency. Eleven participants were confirmed to have GH deficiency, all with very low or undetectable circulating concentrations of insulin-like growth factor-1 and insulin-like growth factor binding protein-3. Seven underwent GH stimulation testing and all had insufficient responses with a median GH peak of 3.7 ng/ml (range 1.1-8.6). Growth patterns revealed a drastic decline in length z-scores within the first year of life but then stabilized afterward. Five were treated with GH; one discontinued due to inconsolability. The other four participants continued on GH with improvement in linear growth velocity. Other endocrinopathies were identified in 7 of the 11 participants in this cohort. This study indicates that GH deficiency is associated with MCAP and that children with MCAP and hypoglycemia and/or postnatal growth failure should be evaluated for GH deficiency and other endocrinopathies.


Assuntos
Capilares/anormalidades , Classe I de Fosfatidilinositol 3-Quinases/genética , Hormônio do Crescimento/deficiência , Hipoglicemia/genética , Malformações Vasculares/genética , Encéfalo/metabolismo , Encéfalo/patologia , Capilares/patologia , Criança , Pré-Escolar , Feminino , Predisposição Genética para Doença , Hormônio do Crescimento/genética , Humanos , Hipoglicemia/complicações , Hipoglicemia/patologia , Lactente , Recém-Nascido , Masculino , Mutação/genética , Polimicrogiria/genética , Polimicrogiria/patologia , Malformações Vasculares/complicações , Malformações Vasculares/patologia
16.
Pediatr Diabetes ; 21(5): 909-916, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32410305

RESUMO

BACKGROUND: During the recent-onset period of type 1 diabetes (T1D), parents may be at increased risk for depression, stress, and hypoglycemia fear; however, current studies have not examined the parental psychological experience and anxiety from hypoglycemia fear (ie, hypoglycemia worry) over time. This study examined the trajectory of parental hypoglycemia worry (Hypoglycemia Fear Survey-Worry [HFS-Worry]) in families of children with recent-onset T1D and the effects of baseline parental depression on parents' trajectory of HFS-Worry. METHODS: We enrolled 128 families of children ages 5- to 9-years-old with recent onset T1D in this study. At baseline, 125 parents completed measures of depression and HFS-Worry, followed by 111 at 6-month follow-up, 113 at 12-month follow-up, and 107 at 18-month follow-up. We used multilevel modeling to examine the 18-month trajectories of HFS-Worry and to examine if parental depression modified these trajectories. RESULTS: We found that parents HFS-Worry scores increased over time for parents with and without elevated depressive symptoms. Parents' baseline report of depression appeared to modify their trajectory of HFS-Worry over time such that parents with elevated depressive symptoms reported significantly higher levels of worry when compared to parents without depressive symptoms across the 18-month study period (P < .05). CONCLUSIONS: Parents of children with recent-onset T1D, who reported elevated depressive symptoms, reported higher HFS-Worry across the study period. Our findings suggest clinics should consider screening for parent depression and hypoglycemia worry following a T1D diagnosis. Integrating psychological screening for parents could help clinics to provide relevant treatment resources and tailor diabetes education for parents. Trial Registration NCT03698708.


Assuntos
Depressão/diagnóstico , Diabetes Mellitus Tipo 1/psicologia , Hipoglicemia/psicologia , Pais/psicologia , Adolescente , Adulto , Idade de Início , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Ansiedade/etiologia , Criança , Pré-Escolar , Depressão/epidemiologia , Depressão/etiologia , Diabetes Mellitus Tipo 1/sangue , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/epidemiologia , Medo/psicologia , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Relações Pais-Filho , Prognóstico , Inquéritos e Questionários , Estados Unidos/epidemiologia
17.
Pediatr Diabetes ; 21(4): 673-680, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32227565

RESUMO

OBJECTIVE: To monitor occurrence of stressful life events, assess correlations with family functioning and parental psychosocial measures, and examine the impact of stressful life events on diabetes management in the first year after diagnosis of type 1 diabetes (T1D) in children using a mixed methods design. METHODS: In a prospective study of 5- to 9-year-olds with recent-onset T1D (mean age 7.4 ± 1.3 years, T1D duration 4.7 ± 3.3 months), we monitored glycated hemoglobin A1c (HbA1c), income, job status, family health, and marital status at baseline and every 3 months up to 1 year. We measured coping, parental depression, and diabetes family conflict at baseline. RESULTS: Of 128 families, 53.9% (n = 69) reported 1+ stressful event, with 25.8% reporting income change (n = 33) during this period, 23.4% additional family health changes (n = 30), 22.7% job changes (n = 29), 21.9% changes in child's school (n = 28), and 3.9% changes in marital status (n = 5). Baseline active avoidance coping, parental depression, and diabetes family conflict correlated with a higher number of stressful life events (r = 0.239, P < .01; r = 0.197, P < .05; r = 0.225, P < .01, respectively). There were also cross-sectional associations between HbA1c and income decrease, school change, and job change at various time points in the study. CONCLUSIONS: Families can experience concurrent life stressors during the first year of T1D, which relate to coping, depression, and conflict. Consistent with existing literature, stressful life events relate to glycemic management. Future research should explore the individual's or parent's perception of stress and ways that diabetes centers can effectively assist families of youth with T1D and concurrent life stressors.


Assuntos
Adaptação Psicológica/fisiologia , Diabetes Mellitus Tipo 1 , Controle Glicêmico , Acontecimentos que Mudam a Vida , Pais/psicologia , Adulto , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Criança , Pré-Escolar , Estudos Transversais , Depressão/epidemiologia , Depressão/etiologia , Depressão/psicologia , Diabetes Mellitus Tipo 1/sangue , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/epidemiologia , Diabetes Mellitus Tipo 1/psicologia , Feminino , Seguimentos , Hemoglobinas Glicadas/análise , Hemoglobinas Glicadas/metabolismo , Controle Glicêmico/métodos , Controle Glicêmico/psicologia , Humanos , Masculino , Relações Pais-Filho , Estudos Prospectivos , Fatores Socioeconômicos , Estresse Psicológico/epidemiologia , Estresse Psicológico/etiologia , Estados Unidos/epidemiologia
18.
J Med Internet Res ; 22(6): e17184, 2020 06 03.
Artigo em Inglês | MEDLINE | ID: mdl-32217508

RESUMO

BACKGROUND: Self-management of type 1 diabetes (T1D) requires numerous decisions and actions by people with T1D and their caregivers and poses many daily challenges. For those with T1D and a developmental disorder such as autism spectrum disorder (ASD), more complex challenges arise, though these remain largely unstudied. OBJECTIVE: This study aimed to better understand the barriers and facilitators of raising a child with T1D and ASD. Secondary analysis of web-based content (phase 1) and telephone interviews (phase 2) were conducted to further expand the existing knowledge on the challenges and successes faced by these families. METHODS: Phase 1 involved a qualitative analysis of publicly available online forums and blog posts by caregivers of children with both T1D and ASD. Themes from phase 1 were used to create an interview guide for further in-depth exploration via interviews. In phase 2, caregivers of children with both T1D and ASD were recruited from Penn State Health endocrinology clinics and through the web from social media posts to T1D-focused groups and sites. Interested respondents were directed to a secure web-based eligibility assessment. Information related to T1D and ASD diagnosis, contact information, and demographics were collected. On the basis of survey responses, participants were selected for a follow-up telephone interview and were asked to complete the adaptive behavior assessment system, third edition parent form to assess autism severity and upload a copy of their child's most recent hemoglobin A1c (HbA1c) result. Interviews were transcribed, imported into NVivo qualitative data management software, and analyzed to determine common themes related to barriers and facilitators of raising a child with both ASD and T1D. RESULTS: For phase 1, 398 forum posts and blog posts between 2009 and 2016 were analyzed. Common themes related to a lack of understanding by the separate ASD and T1D caregiver communities, advice on coping techniques, rules and routines, and descriptions of the health care experience. For phase 2, 12 eligible respondents were interviewed. For interviewees, the average age of the child at diagnosis with T1D and ASD was 7.92 years and 5.55 years, respectively. Average self-reported and documented HbA1c levels for children with T1D and ASD were 8.6% (70 mmol/mol) and 8.7% (72 mmol/mol), respectively. Common themes from the interviews related to increased emotional burden, frustration surrounding the amount of information they are expected to learn, and challenges in the school setting. CONCLUSIONS: Caregivers of children with both T1D and ASD face unique challenges, distinct from those faced by caregivers of individuals who have either disorder alone. Understanding these challenges may help health care providers in caring for this unique population. Referral to the diabetes online community may be a potential resource to supplement the care received by the medical community.


Assuntos
Transtorno do Espectro Autista/psicologia , Cuidadores/psicologia , Diabetes Mellitus Tipo 1/psicologia , Criança , Feminino , Humanos , Masculino , Autogestão
19.
Pediatr Diabetes ; 20(5): 645-651, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-30912248

RESUMO

OBJECTIVE: To determine autism spectrum disorder (ASD) prevalence within our pediatric type 1 diabetes (T1D) clinic population and determine clinical characteristics and technology used by individuals with both ASD and T1D compared to matched controls with T1D alone and compared to our overall pediatric T1D clinic. METHODS: Medical chart review showed 30 individuals with both ASD and type 1 diabetes (ASD + T1D). Controls (n = 90) were matched for age, sex, race/ethnicity, and T1D duration. ASD + T1D was compared to both matched controls and the pediatric T1D clinical population. RESULTS: ASD prevalence in the pediatric T1D population was 1.16% (CI 0.96-1.26). Compared to the T1D clinic, ASD + T1D had more males (93% vs 52%; P < 0.0001), lower hemoglobin A1c (HbA1c) (8.2% vs 8.9%; 66 vs 74 mmol/mol; P = 0.006), and lower insulin pump (CSII) use (37% vs 56%; P < 0.0001). No differences were found between ASD + T1D and matched controls in HbA1c or blood glucose checks per day. The ASD + T1D group was less likely to use CSII than matched controls (37% vs 61%; P = 0.03). HbA1c did not change after CSII initiation in ASD + T1D, but increased for matched controls. CONCLUSIONS: Prevalence of ASD in the pediatric T1D population is comparable to the general population in Colorado. Individuals with ASD may experience barriers limiting CSII use, but achieve equivalent glycemic control compared to those without ASD. CSII may be more effective in maintaining lower HbA1c over time in those with ASD than in those without ASD.


Assuntos
Transtorno do Espectro Autista/epidemiologia , Diabetes Mellitus Tipo 1/complicações , Adolescente , Transtorno do Espectro Autista/complicações , Criança , Colorado/epidemiologia , Diabetes Mellitus Tipo 1/epidemiologia , Diabetes Mellitus Tipo 1/terapia , Feminino , Humanos , Sistemas de Infusão de Insulina , Masculino , Prevalência , Estudos Retrospectivos
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