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AIM: Managing type 1 diabetes in young children can cause significant stress for parents. Continuous glucose monitoring (CGM) may reduce parental burden. The Strategies to Enhance CGM Use in Early Childhood (SENCE) trial randomized parents of children (ages 2 to <8 years) with type 1 diabetes to CGM with family behavioural intervention (CGM + FBI), CGM alone (Standard-CGM) or blood glucose monitoring for 26 weeks before receiving CGM + FBI (BGM-Crossover). This report assesses changes in psychosocial outcomes for all groups over 52 weeks. METHODS: CGM + FBI (n = 45), Standard-CGM (n = 42) and BGM-Crossover (n = 44) participants completed psychosocial assessments at baseline, 26 weeks and 52 weeks. Repeated measures linear regression models evaluated change within and between treatment groups. RESULTS: The BGM-Crossover group reported improved diabetes burden (Δ -6.9, 95% CI [-11.3, -2.6], p = 0.003), fear of hypoglycaemia (Δ -6.4, CI [-10.1, -2.6], p = 0.002) and technology satisfaction (Δ 7.3, CI [2.4, 12.2], p = 0.005) from 26 to 52 weeks, similar to published findings in the CGM + FBI group over the first 26 weeks. The Standard-CGM group reported increased technology satisfaction (Δ 7.3, CI [0.6, 14.0], p = 0.027) from baseline to 52 weeks. The CGM + FBI group reported less diabetes burden and fear of hypoglycaemia from baseline to 52 weeks, but changes were not statistically significant. Scores from 26 to 52 weeks did not deteriorate. CONCLUSIONS: Parents demonstrated psychosocial benefits following FBI that appeared to maintain without additional intervention. CGM-focused education with behavioural support likely helps parents of young children with type 1 diabetes reduce burden and worry in the short- and long-term.
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Diabetes Mellitus Tipo 1 , Hipoglicemia , Criança , Pré-Escolar , Humanos , Glicemia , Automonitorização da Glicemia , Pais/psicologiaRESUMO
AIMS: To evaluate the efficacy and safety of ultra-rapid lispro (URLi) versus lispro in a paediatric population with type 1 diabetes (T1D) in a Phase 3, treat-to-target study. MATERIALS AND METHODS: After a 4-week lead-in to optimize basal insulin, participants were randomized to double-blind URLi (n = 280) or lispro (n = 298) injected 0 to 2 minutes prior to meals (mealtime), or open-label URLi (n = 138) injected up to 20 minutes after start of meals (postmeal). Participants remained on pre-study basal insulin (degludec, detemir or glargine). The primary endpoint was glycated haemoglobin (HbA1c) change from baseline after 26 weeks (noninferiority margin 4.4 mmol/mol [0.4%]). RESULTS: Both mealtime and postmeal URLi demonstrated noninferiority to lispro for HbA1c: estimated treatment difference (ETD) for mealtime URLi -0.23 mmol/mol (95% confidence interval [CI] -1.84, 1.39) and postmeal URLi -0.17 mmol/mol (95% CI -2.15, 1.81). Mealtime URLi reduced 1-hour postprandial glucose (PPG) daily mean (P = 0.001) and premeal to 1 hour postmeal PPG excursion daily mean (P < 0.001) versus lispro. The rate and incidence of severe, nocturnal or documented hypoglycaemia (<3.0 mmol/L [54 mg/dL]) were similar for all treatments. With mealtime URLi versus lispro, the rate of postdose hypoglycaemia (<3.0 mmol/L) was higher at ≤2 hours (P = 0.034). The incidence of treatment-emergent adverse events was similar for all treatments. More participants reported an injection site reaction with mealtime URLi (7.9%) versus postmeal URLi (2.9%) and lispro (2.7%). CONCLUSIONS: In children and adolescents with T1D, URLi demonstrated good glycaemic control, and noninferiority to lispro in HbA1c change for mealtime and postmeal URLi. When dosed at the beginning of meals, URLi reduced 1-hour PPG and PPG excursions versus lispro.
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Diabetes Mellitus Tipo 1 , Criança , Humanos , Adolescente , Insulina Lispro/efeitos adversos , Diabetes Mellitus Tipo 1/tratamento farmacológico , InsulinaRESUMO
Aims: The aims of this study were to assess domains of executive function in relation to diabetes management and glycemic control in adolescents with type 1 diabetes and to compare adolescent self-report and parent proxy-report of adolescent executive function. Methods: Adolescents with type 1 diabetes (N = 169, 46% female, age 15.9 ± 1.3 years) and their parents completed self-report and parent proxy-report versions of the Behavior Rating Inventory of Executive Function (BRIEF). Results: Self-report and parent proxy-report BRIEF T scores were moderately to strongly correlated; parent proxy scores were significantly higher than self-report scores. Executive function problems (Global Executive Composite T score ≥60) occurred in 9% of adolescents by self-report and 26% by parent proxy-report. For almost all Metacognition Index scales, elevated (T score ≥60) parent proxy scores were associated with lower adherence, lower adolescent diabetes self-efficacy, and more parent involvement in diabetes management. Elevated scores on several Metacognition Index scales were associated with less pump use (Plan/Organize by self-report, Initiate by parent proxy-report, and Monitor by parent proxy-report) and higher A1C (Plan/Organize by self-report and parent proxy-report and Organization of Materials by parent proxy-report). The only significant associations for the Behavioral Regulation Index scales occurred for adherence (by parent proxy-report) and diabetes self-efficacy (by self-report and parent-report). Conclusion: Adolescents with type 1 diabetes who have problems with metacognition may need additional support for diabetes self-management.
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Objective: School nurses are integral to optimizing diabetes management for students with type 1 diabetes. The aim of this study was to describe the use of diabetes technology in schools over time and assess school nurses' comfort level performing diabetes management tasks. Study design: From 2012 to 2019, school nurses who attended a diabetes education program completed a survey about their experience and comfort level with diabetes management. Results: A total of 1,796 school nurses completed the survey; 56% had at least 5 years of school nursing experience. Most (86%) had at least one student with type 1 diabetes. Among school nurses with at least one student with type 1 diabetes, 73% had at least one student using insulin pump therapy, and 48% had at least one student using continuous glucose monitoring (CGM). There was no change in pump use over time, but the percentage of nurses who had a student using CGM increased significantly from 24% in 2012 to 86% in 2019 (P <0.001). School nurses' comfort level using pumps remained stable over time. Overall, 47% reported being mostly/very comfortable giving boluses using a pump, and 17% reported being mostly/very comfortable troubleshooting problems with a pump. However, there was a significant increase in school nurses reporting feeling mostly/very comfortable working with CGM devices, increasing from 9% in 2012 to 44% in 2019 (P <0.001). Conclusion: School nurses are an important part of diabetes management for school-aged youth with type 1 diabetes. There is a need for additional diabetes education and support to build their confidence with diabetes management and technology, especially with further technological advancements in management.
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BACKGROUND: Closed-loop systems that automate insulin delivery may improve glycemic outcomes in patients with type 1 diabetes. METHODS: In this 6-month randomized, multicenter trial, patients with type 1 diabetes were assigned in a 2:1 ratio to receive treatment with a closed-loop system (closed-loop group) or a sensor-augmented pump (control group). The primary outcome was the percentage of time that the blood glucose level was within the target range of 70 to 180 mg per deciliter (3.9 to 10.0 mmol per liter), as measured by continuous glucose monitoring. RESULTS: A total of 168 patients underwent randomization; 112 were assigned to the closed-loop group, and 56 were assigned to the control group. The age range of the patients was 14 to 71 years, and the glycated hemoglobin level ranged from 5.4 to 10.6%. All 168 patients completed the trial. The mean (±SD) percentage of time that the glucose level was within the target range increased in the closed-loop group from 61±17% at baseline to 71±12% during the 6 months and remained unchanged at 59±14% in the control group (mean adjusted difference, 11 percentage points; 95% confidence interval [CI], 9 to 14; P<0.001). The results with regard to the main secondary outcomes (percentage of time that the glucose level was >180 mg per deciliter, mean glucose level, glycated hemoglobin level, and percentage of time that the glucose level was <70 mg per deciliter or <54 mg per deciliter [3.0 mmol per liter]) all met the prespecified hierarchical criterion for significance, favoring the closed-loop system. The mean difference (closed loop minus control) in the percentage of time that the blood glucose level was lower than 70 mg per deciliter was -0.88 percentage points (95% CI, -1.19 to -0.57; P<0.001). The mean adjusted difference in glycated hemoglobin level after 6 months was -0.33 percentage points (95% CI, -0.53 to -0.13; P = 0.001). In the closed-loop group, the median percentage of time that the system was in closed-loop mode was 90% over 6 months. No serious hypoglycemic events occurred in either group; one episode of diabetic ketoacidosis occurred in the closed-loop group. CONCLUSIONS: In this 6-month trial involving patients with type 1 diabetes, the use of a closed-loop system was associated with a greater percentage of time spent in a target glycemic range than the use of a sensor-augmented insulin pump. (Funded by the National Institute of Diabetes and Digestive and Kidney Diseases; iDCL ClinicalTrials.gov number, NCT03563313.).
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Diabetes Mellitus Tipo 1/tratamento farmacológico , Hipoglicemiantes/administração & dosagem , Sistemas de Infusão de Insulina , Insulina/administração & dosagem , Pâncreas Artificial , Adolescente , Adulto , Idoso , Glicemia/análise , Diabetes Mellitus Tipo 1/sangue , Desenho de Equipamento , Feminino , Hemoglobinas Glicadas/análise , Humanos , Hipoglicemiantes/efeitos adversos , Insulina/efeitos adversos , Sistemas de Infusão de Insulina/efeitos adversos , Masculino , Pessoa de Meia-Idade , Pâncreas Artificial/efeitos adversos , Adulto JovemRESUMO
Decentralized sensing of analytes in remote locations is today a reality. However, the number of measurable analytes remains limited, mainly due to the requirement for time-consuming successive standard additions calibration used to address matrix effects and resulting in greatly delayed results, along with more complex and costly operation. This is particularly challenging in commonly used immunoassays of key biomarkers that typically require from 60 to 90 min for quantitation based on two standard additions, hence hindering their implementation for rapid and routine diagnostic applications, such as decentralized point-of-care (POC) insulin testing. In this work we have developed and demonstrated the theoretical framework for establishing a universal slope for direct calibration-free POC insulin immunoassays in serum samples using an electrochemical biosensor (developed originally for extended calibration by standard additions). The universal slope is presented as an averaged slope constant, relying on 68 standard additions-based insulin determinations in human sera. This new quantitative analysis approach offers reliable sample measurement without successive standard additions, leading to a dramatically simplified and faster assay (30 min vs 90 min when using 2 standard additions) and greatly reduced costs, without compromising the analytical performance while significantly reducing the analyses costs. The substantial improvements associated with the new universal slope concept have been demonstrated successfully for calibration-free measurements of serum insulin in 30 samples from individuals with type 1 diabetes using meticulous statistical analysis, supporting the prospects of applying this immunoassay protocol to routine decentralized POC insulin testing.
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Técnicas Biossensoriais , Insulina , Biomarcadores/análise , Humanos , Imunoensaio/métodos , Testes ImediatosRESUMO
The ability to continuously monitor the concentration of specific molecules in the body is a long-sought goal of biomedical research. For this purpose, interstitial fluid (ISF) was proposed as the ideal target biofluid because its composition can rapidly equilibrate with that of systemic blood, allowing the assessment of molecular concentrations that reflect full-body physiology. In the past, continuous monitoring in ISF was enabled by microneedle sensor arrays. Yet, benchmark microneedle sensors can only detect molecules that undergo redox reactions, which limits the ability to sense metabolites, biomarkers, and therapeutics that are not redox-active. To overcome this barrier, here, we expand the scope of these devices by demonstrating the first use of microneedle-supported electrochemical, aptamer-based (E-AB) sensors. This platform achieves molecular recognition based on affinity interactions, vastly expanding the scope of molecules that can be sensed. We report the fabrication of microneedle E-AB sensor arrays and a method to regenerate them for multiple uses. In addition, we demonstrate continuous molecular measurements using these sensors in flow systems in vitro using single and multiplexed microneedle array configurations. Translation of the platform to in vivo measurements is possible as we demonstrate with a first E-AB measurement in the ISF of a rodent. The encouraging results reported in this work should serve as the basis for future translation of microneedle E-AB sensor arrays to biomedical research in preclinical animal models.
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Monitoramento de Medicamentos , Agulhas , Animais , Biomarcadores/análise , Monitoramento de Medicamentos/métodos , Líquido Extracelular/química , Oligonucleotídeos/análiseRESUMO
BACKGROUND: Despite potential glycemic benefits of continuous glucose monitor (CGM) use in young children with type 1 diabetes, psychosocial and behavioral challenges may interfere with sustained use. We developed a 5-session family behavioral intervention (FBI) to support CGM use. OBJECTIVE: We report on the multi-step development of the FBI, training interventionists, implementation in a 14-site clinical trial, and participant satisfaction. METHODS: A multidisciplinary team created the FBI based on mixed-methods (i.e., survey data, qualitative research) preliminary work with parents of young children. Investigators trained non-physician staff to deliver the 5 sessions per an intervention manual. Trial participants received the FBI either during the first (FBI group, n = 50) or second 6-months (Crossover group, n = 44) of the 1-year trial. Investigators listened to session recordings to rate intervention fidelity, and participants rated satisfaction with the FBI. RESULTS: The complete 5-session FBI was delivered to 89% of participants, in-person (73%) or by telephone (23%). Sessions lasted 23 min on average, and fidelity was high across sessions. Over 80% of participants rated very high satisfaction with all aspects of the FBI and offered few recommendations for improvement. CONCLUSIONS: Having been developed based on experiences and input of families of young children with type 1 diabetes, the FBI represented a novel behavioral approach to enhance sustained CGM use during a challenging developmental period. Evidence of strong feasibility and acceptability supports its potential for implementation in research and clinical care. As diabetes technologies evolve, the FBI may continue to be refined to address parents' most relevant concerns.
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Diabetes Mellitus Tipo 1 , Terapia Comportamental , Glicemia , Criança , Pré-Escolar , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Humanos , Pais/psicologia , Inquéritos e QuestionáriosRESUMO
Background: There is gradual acquisition of type 1 diabetes self-care responsibility across childhood as youth mature and gain more independence from their family. Understanding the timing of diabetes self-care by youth can guide the tailoring of diabetes education and support programs. Objective: To investigate parent-perceived responsibility for diabetes self-care tasks across childhood. Methods: Parents/guardians of youth (ages 5-18 years) with type 1 diabetes reported parent involvement in diabetes management using the Diabetes Family Responsibility Questionnaire. Survey items were divided items into five domains: nutrition, monitoring, insulin dosing, communication, and health surveillance. Age-groups for analyses were 5-10 years (elementary school), 11-14 years (early adolescence), and 15-18 years (late adolescence). Demographic, diabetes management, and A1C data were collected at the time of survey completion. Results: Youth (n = 148, 50% male) were a mean age of 12.9 ± 3.3 years, with a mean type 1 diabetes duration of 6.2 ± 3.6 years; 66% used insulin pump therapy, and the mean A1C was 8.4 ± 1.3%. Of the parents (84% mothers, 91% White), 83% were married, and 52% were college educated. Per parent report, less parental involvement was associated with older youth age (P <0.001). Across all age-groups, more overall parental involvement was related to lower A1C (P = 0.02). Youth self-care in the nutrition domain began in elementary school, whereas self-care in monitoring and insulin dosing began in early adolescence, and self-care with regard to communication started in late adolescence. Responsibility for health surveillance remained mainly under parent care throughout childhood and adolescence. Conclusion: Providing education and support for youth during their acquisition of self-care tasks, especially those relating to nutrition, monitoring, and insulin dosing, may help to prevent glycemic deterioration later in childhood and adolescence.
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OBJECTIVE: Prior to the transfer from paediatric to adult health care transition, teens with type 1 diabetes seek increasing independence in diabetes self-care while parent involvement in care decreases. Yet, few teens attain glycaemic targets. This study aimed to assess changes in perceived readiness for independent self-care in teens with type 1 diabetes over 18 months, from both teens' and parents' perspectives, and to evaluate its predictive value for diabetes self-management and haemoglobin A1c (HbA1c ). RESEARCH DESIGN AND METHODS: At baseline, 6, 12 and 18 months, 178 teens with type 1 diabetes (mean ± SD age 14.9±1.3 years; HbA1c 8.5 ± 1.0% (69 ± 11 mmol/mol); 48% female) and their parents completed the Readiness for Independent Self-Care Questionnaire (RISQ-T and RISQ-P, respectively) and a measure of self-management. Chart review provided HbA1c values. Statistical analyses encompassed bivariate correlations, paired t-tests and multivariable longitudinal mixed models. RESULTS: Teens perceived greater self-care readiness than their parents at baseline and over 18 months of follow-up. Both teen and parent perceptions of teen readiness for independent self-care increased over time, and significantly predicted higher teen self- and parent proxy-reported teen diabetes self-management, respectively, but not improved HbA1c . CONCLUSIONS: The current findings may point to a disconnect between how increased readiness for independent self-care may translate into better perceived diabetes self-management, but not into better HbA1c . In an effort to optimize HbA1c in teens with type 1 diabetes, future research is needed to design interventions that align perceived readiness for independent self-care with self-care behaviours that improve HbA1c .
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Diabetes Mellitus Tipo 1/terapia , Hemoglobinas Glicadas/análise , Autogestão , Transição para Assistência do Adulto , Adolescente , Comportamento do Adolescente/fisiologia , Glicemia/metabolismo , Diabetes Mellitus Tipo 1/sangue , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/epidemiologia , Feminino , Hemoglobinas Glicadas/metabolismo , Controle Glicêmico/psicologia , Controle Glicêmico/normas , Humanos , Estudos Longitudinais , Masculino , Percepção , Prognóstico , Autocuidado/psicologia , Autocuidado/normas , Autogestão/psicologia , Autogestão/estatística & dados numéricos , Transição para Assistência do Adulto/normas , Estados Unidos/epidemiologiaRESUMO
AIM: To explore cross-sectional associations between executive function problems and disordered eating behaviours in teens with type 1 diabetes. METHODS: Executive function was assessed by the Behavior Rating Inventory of Executive Function (BRIEF), self-report and parent proxy-report versions. Scores ≥60 (on Global Executive Composite, Behavioral Regulation Index, Metacognition Index or clinical scales) indicated problems with executive function. Disordered eating behaviour was assessed by the Diabetes Eating Problem Survey Revised (DEPS-R) and categorized as follows: <10 low, 10-19 moderate and ≥20 high. RESULTS: In the 169 teens (46% girls, median age 16.0 years [range 13.7-18.7], median diabetes duration 8.9 years [range 1.4-16.6]), 29% had moderate and 12% had high level of disordered eating behaviours. Executive function problems were present in 9% by self report and 26% by parent proxy-report. Among teens with moderate/high level of disordered eating behaviours, 19% had executive function problems by self report (vs. 2% of teens with low level of disordered eating behaviours, p < 0.001) and 33% had executive function problems by parent proxy-report (vs. 20% of teens with low level of disordered eating behaviours, p = 0.056). A greater level of disordered eating behaviours was associated with executive function problems by teen self report on the General Executive Composite (p < 0.001), Behavioral Regulation Index (p < 0.001), emotional control clinical scale (p < 0.001), shift clinical scale (p < 0.001) and by parent proxy-report on the task initiation clinical scale (p = 0.008). CONCLUSIONS: Assessing executive function and screening for disordered eating behaviours in teens with type 1 diabetes could help identify a subset of teens at high risk for adverse outcomes and need for intervention.
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Diabetes Mellitus Tipo 1/psicologia , Função Executiva/fisiologia , Comportamento Alimentar/psicologia , Transtornos da Alimentação e da Ingestão de Alimentos/etiologia , Autorrelato , Adolescente , Estudos Transversais , Diabetes Mellitus Tipo 1/complicações , Transtornos da Alimentação e da Ingestão de Alimentos/psicologia , Feminino , Seguimentos , Humanos , Masculino , Inquéritos e Questionários , Fatores de TempoRESUMO
AIM: This cross-sectional study examined the associations of comorbid conditions on health-related quality of life (HRQOL) in 601 youth with type 1 diabetes. We evaluated associations between number of comorbid conditions (0, 1, ≥2) and particular comorbid conditions and youth HRQOL by self-report and parent proxy-report. RESEARCH DESIGN AND METHODS: Youth with type 1 diabetes, aged 5-18 years, and their parents completed the PedsQL 4.0 Generic Core Scales self-report and parent proxy-report, respectively; they also reported youths' comorbid medical and mental health conditions. Separate linear regression models tested the relationship between number of comorbid conditions and specific comorbid conditions with youth-reported and parent proxy-reported HRQOL. RESULTS: Youth with ≥2 comorbid conditions had significantly lower HRQOL by both self- and parent proxy-reports compared with youth with 0 or 1 comorbid condition (youth self-report: 0: 85 ± 12, 1: 85 ± 13, 2+: 78 ± 16, p = <0.0001; parent proxy-report: 0: 83 ± 12, 1: 81 ± 13, 2+: 74 ± 15, p = <0.0001). Amongst the comorbid conditions, only a mental health comorbidity was associated with lower HRQOL. For youth and parent proxy-reports, both the number of comorbidities (≥2) and the presence of a mental health comorbidity were significantly associated with lower HRQOL. CONCLUSIONS: Health-related quality of life seems to be preserved in youth with type 1 diabetes unless confronted by multiple comorbidities as reported by youth and their parents. Our findings highlight the importance of tracking the presence of multiple comorbid conditions, possibly by reviewing problem and medication lists in the medical record, as well as screening for and addressing mental health conditions in routine diabetes care.
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Diabetes Mellitus Tipo 1/epidemiologia , Diabetes Mellitus Tipo 1/psicologia , Saúde Mental , Qualidade de Vida , Adolescente , Fatores Etários , Criança , Pré-Escolar , Comorbidade , Estudos Transversais , Feminino , Humanos , Masculino , AutorrelatoRESUMO
AIMS: To explore adolescent perspectives on programme design in the transition to adult care. METHODS: We conducted five focus groups on adolescents with type 1 diabetes nearing the age of transition to adult care. Study participants also completed an embedded survey where they rated a wide range of potential transition interventions. Focus group transcripts were analysed with three iterations of line-by-line coding to triangulate themes and subthemes. RESULTS: Four themes were identified: Individualization-how to personalize the transition experience (having choices in the transition experience, meeting adult provider before transition and specific transition preparation); Identity-how the world relates to my diabetes (stigma of type 1 diabetes, confusion with type 2 diabetes, diagnosis disclosure and resilience); Interconnection-how my support system can help me with my diabetes (peer support, near peer support, parental support, loss of bond with paediatric team and fear of not having a bond with adult team); and Impediment-how my diabetes limits me (self-care takes work and time, unpredictability and restrictiveness, and emotional burden). Highly rated interventions from the survey included: good communication between the paediatric and adult teams, medical summary of past diabetes care, and having paediatric and adult teams in the same building. CONCLUSIONS: The design of future transition interventions for adolescents with type 1 diabetes should address the issues of Individualization, Identity, Interconnection and Impediment. Collaborative processes between paediatric and adult providers were also rated as important strategies to facilitate the transition to adult care.
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Diabetes Mellitus Tipo 1 , Transição para Assistência do Adulto , Adolescente , Feminino , Grupos Focais , Humanos , Masculino , Autocuidado , Identificação Social , Apoio SocialRESUMO
AIMS: Participant-driven solutions may help youth and families better engage and maintain use of diabetes technologies. We explored innovative features and functionalities of an ideal artificial pancreas (AP) system suggested by youth with type 1 diabetes and parents. METHODS: Semi-structured interviews were conducted with 39 youth, ages 10-25 years, and 44 parents. Interviews were recorded, transcribed and coded using thematic analysis. RESULTS: Youth (72% female, 82% non-Hispanic white) were (M ± SD) ages 17.0 ± 4.7 years, with diabetes for 9.4 ± 4.9 years, and HbA1c of 68 ± 11 mmol/mol (8.4 ± 1.1%); 79% were pump-treated and 82% were continuous glucose monitor users. Of parents, 91% were mothers and 86% were non-Hispanic white, with a child 10.6 ± 4.5 years old. Youth and parents suggested a variety of innovative features and functionalities for an ideal AP system related to (1) enhancing the appeal of user interface, (2) increasing automation of new glucose management functionalities, and (3) innovative and commercial add-ons for greater convenience. Youth and parents offered many similar suggestions, including integration of ketone testing, voice activation, and location-tracking into the system. Youth seemed more driven by increasing convenience and normalcy while parents expressed more concerns with safety. CONCLUSIONS: Youth and parents expressed creative solutions for an ideal AP system to increase ease of use, enhance normalcy, and reduce burden of management. Designers of AP systems will likely benefit from incorporating the desired preferences by end users to optimize acceptance and usability by young persons with diabetes.
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Diabetes Mellitus Tipo 1/tratamento farmacológico , Diabetes Mellitus Tipo 1/psicologia , Desenho de Equipamento/psicologia , Sistemas de Infusão de Insulina/psicologia , Insulina/administração & dosagem , Pâncreas Artificial/psicologia , Pais/psicologia , Adolescente , Adulto , Fatores Etários , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Preferência do Paciente , Adulto JovemRESUMO
BACKGROUND: Cost is a major consideration in the uptake and continued use of diabetes technology. With increasing use of automated insulin delivery systems, it is important to understand the specific cost-related barriers to technology adoption. In this qualitative analysis, we were interested in understanding and examining the decision-making process around cost and diabetes technology use. MATERIALS AND METHODS: Four raters coded transcripts of four stakeholder groups using inductive coding for each stakeholder group to establish relevant themes/nodes. We applied the Social Ecological Model in the interpretation of five thematic levels of cost. RESULTS: We identified five thematic levels of cost: policy, organizational, insurance, interpersonal and individual. Equitable diabetes technology access was an important policy-level theme. The insurance-level theme had multiple subthemes which predominantly carried a negative valence. Participants also emphasized the psychosocial burden of cost specifically identifying diabetes costs to their families, the guilt of diabetes related costs, and frustration in the time and involvement required to ensure insurance coverage. CONCLUSION: We found broad consensus in how cost is experienced by stakeholder groups. Cost considerations for diabetes technology uptake extended beyond finances to include time, cost to society, morality and interpersonal relationships. Cost also reflected an important moral principle tied to the shared desire for equitable access to diabetes technology. Knowledge of these considerations can help clinicians and researchers promote equitable device uptake while anticipating barriers for all persons living with type 1 diabetes and their families.
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Efeitos Psicossociais da Doença , Diabetes Mellitus Tipo 1/economia , Diabetes Mellitus Tipo 1/psicologia , Família/psicologia , Custos de Cuidados de Saúde , Sistemas de Infusão de Insulina/economia , Tomada de Decisões , Diabetes Mellitus Tipo 1/terapia , Frustração , Cobertura do Seguro , Relações Interpessoais , Pesquisa QualitativaRESUMO
This study assessed parental reactions to the report of elevated depressive symptoms in a sample of 29 youth with type 1 diabetes (ages 8-17 years; 48% female) who scored ≥15 on the Center for Epidemiologic Studies Depression Scale for Children (CES-DC). We also assessed parental depressive symptoms and how the presence of such symptoms was linked to parental reactions to the report of a positive screening score in their children and subsequent acceptance of a mental health referral. Mental health professionals contacted parents to discuss elevated scores and offer a mental health referral. Two coders reviewed the documentation of phone contacts made by mental health professionals and categorized parental responses to their child's elevated CES-DC score and the disposition plan. Youth and parent depressive symptoms were modestly correlated (r = 0.21, P = .01). About half (55%, 16/29) of parents were unaware of their child's depressive symptoms. Only 14% (4/29) of youth were already receiving mental health care while 28% (8/29) of parents accepted a referral. Parents with depressive symptoms were frequently unaware of their child's symptoms. Findings provide insight into parental reactions to learning of their child's depressive symptoms and highlight the need for more research on parental mood and reactions to their child's positive screen for depressive symptoms, as a potential barrier to mental health referral acceptance.
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Depressão/diagnóstico , Depressão/psicologia , Diabetes Mellitus Tipo 1/psicologia , Pais/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Adolescente , Criança , Estudos de Coortes , Depressão/etiologia , Diabetes Mellitus Tipo 1/terapia , Feminino , Humanos , Masculino , Relações Pais-Filho , Encaminhamento e ConsultaRESUMO
BACKGROUND: As new diabetes technologies improve to better manage glucose levels, users' priorities for future technologies may shift to prioritize burden reduction and ease of use. We used qualitative methods to explore youth and parent desired features of an "ideal" artificial pancreas (AP) system. METHODS: We conducted semi-structured interviews with 39 youth, ages 10-25 years, and 44 parents. Interviews were audio-recorded, transcribed, and coded using thematic analysis. RESULTS: Youth (79% female, 82% non-Hispanic white) were (M ± SD) ages 17.0 ± 4.7 years, with diabetes for 9.4 ± 4.9 years, and HbA1c of 8.4 ± 1.1%; 79% were pump-treated and 82% used CGM. Of parents, 91% were mothers and 86% were non-Hispanic white. Participants suggested various ways in which an ideal AP system could reduce physical and emotional burdens of diabetes. Physical burdens could be reduced by lessening user responsibilities to manage glucose for food and exercise, and wear or carry devices. Emotional burden could be reduced by mitigating negative emotional reactions to sound and frequency of alerts, while increasing feelings of normalcy. Youth and parents differed in their suggestions to reduce emotional burden. Participants suggested features that would improve glycemia, but nearly always in the context of how the feature would directly reduce their diabetes-specific burden. CONCLUSIONS: Although participants expressed interest in improving glucose levels, the pervasive desire among suggested features of an ideal AP system was to minimize the burden of diabetes. Understanding and addressing users' priorities to reduce physical and emotional burden will be necessary to enhance uptake and maintain use of future AP systems.
Assuntos
Efeitos Psicossociais da Doença , Diabetes Mellitus Tipo 1/tratamento farmacológico , Diabetes Mellitus Tipo 1/psicologia , Pâncreas Artificial , Pais , Preferência do Paciente/psicologia , Adolescente , Criança , Emoções , Feminino , Hemoglobinas Glicadas/análise , Controle Glicêmico , Humanos , Hipoglicemiantes/administração & dosagem , Insulina/administração & dosagem , Sistemas de Infusão de Insulina , Masculino , Preferência do Paciente/estatística & dados numéricos , Qualidade de Vida , Adulto JovemRESUMO
PURPOSE: Type 1 diabetes (T1D) is one of the most complex and demanding chronic diseases in adolescents. Given the detrimental impact of problems with executive function (EF; the ability to initiate, plan, and monitor behavior) on health outcomes in adolescents with T1D, most studies have examined common diabetes-specific outcomes related to self-management and glycemic control. This study aims to investigate the impact of executive dysfunction on health-related quality of life (HRQoL; an individual's perceived impact of illness and treatment on daily functioning) in adolescents with T1D from a multi-informant perspective. METHODS: In this cross-sectional study, 169 adolescents (mean ± SD age 15.9 ± 1.3 years) and their parents reported on adolescent EF and HRQoL (assessed by the BRIEF and PedsQL, respectively). Parent-youth interview and chart review provided demographic and clinical characteristics. Statistical analyses encompassed bivariate correlations, t-tests, chi-squared tests, and multivariable analyses. RESULTS: Adolescent self-reports and parent proxy-reports identified 13% and 32% of adolescents, respectively, as having executive dysfunction. Poorer adolescent EF was associated with poorer adolescent HRQoL by both adolescent self-report and parent proxy-report, respectively. In significant multivariable models, adjusted for adolescent age, sex, diabetes duration, and glycemic control, 21% and 24% of the variance in adolescent self-reported and parent proxy-reported HRQoL were explained by adolescent self-reported and parent proxy-reported executive dysfunction. A significant interaction of sex with adolescent self-report of executive dysfunction indicated that executive dysfunction had a greater negative impact on HRQoL in females than males (p < .01). CONCLUSIONS: Findings suggest that the impact of EF problems in adolescents with T1D goes beyond diabetes-specific outcomes and focuses attention on the need to evaluate and preserve HRQoL.
Assuntos
Disfunção Cognitiva/etiologia , Diabetes Mellitus Tipo 1/epidemiologia , Função Executiva/fisiologia , Adolescente , Estudos Transversais , Diabetes Mellitus Tipo 1/psicologia , Feminino , Humanos , Masculino , Qualidade de Vida/psicologia , Caracteres SexuaisRESUMO
AIMS: Conversations about diabetes complications with adolescents and parents can be difficult and emotionally charged. To better inform conversations between providers and families, we sought adolescent and parent perspectives regarding their knowledge of long-term complications (LTCs), where they receive this information, and what they would like to learn from clinicians. METHODS: Adolescents with type 1 diabetes and parents of adolescents with type 1 diabetes participated in semistructured interviews querying knowledge of LTCs, sources of information, and preferred ways for providers to discuss LTCs. Interview transcripts were coded and categorized into central themes by content analysis. RESULTS: Participants included 22 adolescents (17.4 ± 1.7 years of age, diabetes duration 9.7 ± 4.0 years) and 25 parents (41-60 years of age, 84% mothers). Five themes related to complications were identified: 1) "Limited Adolescent Knowledge of Complications," 2) "Discussing Complications Is Important but Not Now or Not for Me," 3) "Outside Sources Overestimate Risk," 4) "Avoid Scare Tactics" and 5) "Emphasize Prevention." Adolescent and parent perspectives were similar, although parents showed greater understanding of complications. CONCLUSION: When discussing complications, individualized, factual, positive, and prevention-focused conversations may be better received by adolescents with type 1 diabetes and their families.