RESUMO
AIMS: Type 1 diabetes is associated with significant morbidity, with an increasing risk of acute diabetes-related complications in adolescence and emerging adulthood. Purposeful transition from paediatric to adult-oriented care could mitigate this risk but is often lacking. Detailed understanding of the perspectives of adolescents in their final year of paediatric care is essential to inform delivery of transition care programs. METHODS: We conducted semi-structured interviews with adolescents (aged 17 years) with type 1 diabetes at an academic institution from April 2017 to May 2018. Participants were recruited through convenience sampling. Sixty-one interviews were transcribed for analysis. Coding followed the principles of thematic analysis. RESULTS: Thirty-six percent of participants were male, and participants were from diverse socioeconomic backgrounds. We found three overarching themes in our analysis: first, difficulties navigating changing relationships with parents and healthcare teams; second, the need to increase type 1 diabetes self-management and differing comfort levels based on age of diagnosis; and third, perceived responsibilities for transition care preparation (for both the paediatric team and adolescents themselves) focused not only on type 1 diabetes-specific skills but also on healthcare system structures. CONCLUSIONS: Our findings suggest that novel transition programs addressing changing inter-personal relationships, disease-specific self-management (adapted for age of diagnosis), and healthcare system navigation, supported by parents and peers, may be needed to improve transition care for adolescents with type 1 diabetes.
Assuntos
Diabetes Mellitus Tipo 1 , Transição para Assistência do Adulto , Adolescente , Adulto , Criança , Diabetes Mellitus Tipo 1/terapia , Feminino , Humanos , Masculino , Relações Pais-Filho , Pais , Pesquisa QualitativaRESUMO
Many professional societies and research studies recommend complete vaccination before pediatric solid organ transplantation. Nevertheless, incompletely vaccinated children often receive transplants. As the number of parents refusing to vaccinate children for nonmedical reasons increases, pediatric transplantation programs face difficult listing decisions. Given the importance of psychosocial criteria in listing decisions, this study explores how parental refusal of vaccination affects those listing decisions. Surveys were emailed to individuals at 195 pediatric solid organ transplantation programs in the United States, with a 71% response rate. Forty-four respondents (39%) reported that their programs have had cases involving parental refusal of vaccination. In response to hypothetical scenarios, 93 respondents (82%) would list a child not vaccinated for medical reasons, whereas only 54 respondents (47%) would list a child whose parents refused vaccination. Only five respondents (4%) reported that their programs had written policies regarding parental refusal of vaccination. These data reveal inconsistencies across pediatric transplantation programs regarding how parental refusal of vaccination affects listing decisions and raise the issue of whether and how the reason for incomplete vaccination should be factored into listing decisions. We recommend further discussion and the development of written guidelines to unify programs' assessments of incompletely vaccinated pediatric transplantation candidates.
Assuntos
Pais/psicologia , Recusa de Participação , Obtenção de Tecidos e Órgãos/estatística & dados numéricos , Transplante , Vacinação/estatística & dados numéricos , Criança , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Programas de Imunização/estatística & dados numéricos , Inquéritos e Questionários , Obtenção de Tecidos e Órgãos/normas , Transplante/normas , Estados UnidosRESUMO
OBJECTIVE: In Canada, few studies have addressed health inequalities in type 1 diabetes (T1D) outcomes. In this study, we examined the relationship between socioeconomic status (SES) and glycemic management in children with T1D and determine whether technology use (insulin pumps or continuous glucose monitoring [CGM]), diabetes-related physician visits, and depressive symptoms modified the association. METHODS: This work was a retrospective cohort study using the Montréal Children's Hospital Pediatric Diabetes Database of children 0 to 18 years old, diagnosed with T1D for ≥1 year, and with a hospital visit between November 2019 and October 2020. Main exposure was SES measured by the Material and Social Deprivation Index (least, moderately, or most deprived). We determined the association between SES and mean glycated hemoglobin (A1C; main outcome) in the year after the index visit using multivariable linear regression, adjusting for age, sex, diabetes duration, technology use, diabetes-related physician visits, and depressive symptoms (subgroup). We examined interaction terms for technology use, diabetes-related physician visits, and depressive symptoms. RESULTS: The study cohort included 306 children (mean age 13.6 years, mean A1C 8.5%). Children in the most-deprived compared with least-deprived quintiles had higher mean A1C; effect modification was significant with CGM only. Children not using CGM in the most-deprived compared with least-deprived quintiles had higher mean A1C (0.52%; 95% confidence interval, 0.14% to 0.86%), whereas the association was not significant for children using CGM. CONCLUSIONS: Lower SES was associated with higher A1C; these disparities were not observed among CGM users. Further research is required to determine strategies to promote CGM access among children of lower SES in the Canadian health-care context.
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Diabetes Mellitus Tipo 1 , Humanos , Criança , Adolescente , Recém-Nascido , Lactente , Pré-Escolar , Diabetes Mellitus Tipo 1/epidemiologia , Diabetes Mellitus Tipo 1/terapia , Diabetes Mellitus Tipo 1/diagnóstico , Hemoglobinas Glicadas , Glicemia , Estudos Retrospectivos , Disparidades Socioeconômicas em Saúde , Automonitorização da Glicemia , Canadá/epidemiologiaRESUMO
Importance: Insulin pumps improve glycemic control and quality of life in children with type 1 diabetes (T1D). Canada's provinces have implemented universal pediatric programs to improve access. However, these programs provide differing financial coverage, allowing for unique cross-jurisdictional comparisons. Objective: To evaluate possible socioeconomic status (SES) disparities in pump uptake in Québec, where pumps are fully funded, with those in Manitoba, where pumps are partially funded. Design, Setting, and Participants: Using health administrative databases and a clinical registry, parallel, population-based cohort studies of children with diabetes were conducted from April 1, 2011, in Québec, and April 1, 2012, in Manitoba, until March 31, 2017. In analysis conducted from July 1, 2019, to November 30, 2021, multivariable Cox proportional hazards regression models were applied to study the association between pump uptake and SES, defined using validated area-based material and social deprivation indices. Children aged 1 to 17 years with T1D were identified using a validated definition in administrative data (Québec) and a clinical registry (Manitoba). Those using pumps before the initiation of provincial programs were excluded. Exposures: Socioeconomic status. Main Outcomes and Measures: Insulin pump uptake. Results: A total of 2919 children with T1D were identified in Québec: 1550 male (53.1%), mean (SD) age at diagnosis, 8.3 (4.4) years, and 1067 (36.6%) were using a pump. In Manitoba, 636 children were identified: 364 male (57.2%), mean (SD) age at diagnosis, 8.8 (4.4) years, and 106 (16.7%) were using a pump. In Québec, the mean age at diagnosis of T1D was lower in children using the pump compared with those not using a pump (7.6 [4.1] vs 8.7 [4.5] years); sex distribution was similar (562 [52.7%] vs 988 [53.3%] male). No differences in mean (SD) age at diagnosis (8.8 [4.4] vs 8.8 [4.3] years) or sex (57 [53.8%] vs 307 [57.9%] male) were noted in both groups in Manitoba. Increasing material deprivation was associated with decreased pump uptake in both Québec (adjusted hazard ratio [aHR] 0.89; 95% CI, 0.85-0.93) and Manitoba (aHR, 0.70; 95% CI, 0.60-0.82). Inclusion of ethnic concentration did not change this association. Socioeconomic disparities in pump uptake were greater in Manitoba than Québec (P = .006 by t test; Cochran Q, 8.15; P = .004; I2 = 87.7%; 95% CI, 52.5%-96.8%). Conclusions and Relevance: The results of this study suggest that the program of full coverage for pumps available in Québec partially mitigates observed SES disparities in uptake and may be a model to improve access for all children with T1D.
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Diabetes Mellitus Tipo 1 , Canadá/epidemiologia , Criança , Diabetes Mellitus Tipo 1/tratamento farmacológico , Diabetes Mellitus Tipo 1/epidemiologia , Feminino , Humanos , Insulina/uso terapêutico , Masculino , Qualidade de Vida , Classe SocialRESUMO
PURPOSE: Medical schools are being approached by direct-to-consumer genotyping companies about genotyping faculty or trainees as a method to "teach" them about the potential implications of genotyping. In thinking about the future incorporation of genotyping into a graduate level genetics course, the purpose of this study was 2-fold: first, to assess knowledge, attitudes, and beliefs of students toward personal genomics as it related to themselves as both as customers and future physicians and as it related to consumers at large, and second, to determine the impact of the course (as taught without genotyping) on knowledge, attitudes, and beliefs. METHODS: We surveyed first-year medical students and graduate students before and after a core genetics course. RESULTS: After the course, students were less likely to believe that genotyping information would be useful to physicians, patients, or consumers; genotyping would provide information to improve their own personal health; or personal genomic testing services are diagnostic of medical conditions. They were more likely to answer knowledge questions accurately after the course but still had difficulty with clinical interpretation. Despite these changes, a slight majority of students were, and remained, interested in undergoing genotyping themselves. Of note, the number who believed genotyping "would help them understand genetic concepts better than someone else's data" decreased. General curiosity was the most commonly chosen reason for interest in undergoing genotyping, and approximately 50% of respondents expressed concern about confidentiality of results. CONCLUSIONS: In conclusion, even without the genotyping process, an educational program about genotyping increased knowledge, particularly about the clinical limitations of genotyping, but student interest in genotyping did not significantly change. Institutions thinking about offering genotyping to their students as part of a learning experience should consider the pros and cons of doing so.
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Privacidade Genética/psicologia , Genômica , Conhecimentos, Atitudes e Prática em Saúde , Estudantes de Medicina/psicologia , Adulto , Feminino , Testes Genéticos/psicologia , Genética Médica/educação , Humanos , Masculino , Inquéritos e Questionários , Adulto JovemRESUMO
Although simple febrile seizures are relatively common and benign in toddlers, it is important to rule out any underlying critical disease that necessitates further intervention and treatment. Thyroid storm, the extreme manifestation of hyperthyroidism, is relatively rare and not often considered in the differential diagnosis of a febrile seizure despite its high mortality rate. Here, we report 1 of the youngest patients with thyroid storm, who initially presented with a febrile seizure. After reevaluation, the 2-year-9-month-old patient was discovered to have thyromegaly, which led to recognition that her persistent tachycardia and widened pulse pressure were likely signs of thyrotoxicosis. Laboratory results were consistent with primary hyperthyroidism due to Graves' disease. Thyroid storm was then diagnosed on the basis of clinical features including gastrointestinal and central nervous system disturbances. Treatment with methimazole, propranolol, hydrocortisone, and Lugol's iodine solution was used. This medication regimen was safe and effective with restoration of a euthyroid state after 2 months and no recurrence of seizures. Improved awareness of hyperthyroidism and thyroid storm can lead to prompt diagnosis and treatment of this endocrine emergency, thus reducing mortality and morbidity. Pediatricians should consider this diagnosis in children with febrile seizures and suggestive vital signs and physical examination findings.
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Doença de Graves/complicações , Convulsões Febris/etiologia , Taquicardia/etiologia , Crise Tireóidea/complicações , Pré-Escolar , Feminino , Doença de Graves/diagnóstico , Humanos , Hidrocortisona/uso terapêutico , Hipertensão/etiologia , Iodetos/uso terapêutico , Metimazol/uso terapêutico , Propranolol/uso terapêutico , Crise Tireóidea/diagnóstico , Crise Tireóidea/tratamento farmacológicoRESUMO
BACKGROUND: The Accreditation Council for Graduate Medical Education (ACGME) Clinical Learning Environment Review (CLER) program focuses on aspects of the graduate medical education learning environment, such as patient safety. Data from CLER site visits reveal that many resident physicians do not receive adequate training on patient safety. OBJECTIVE: We evaluated a pediatric resident-led safety council as a method to meet CLER Pathways to Excellence patient safety objectives. METHODS: The Duke Pediatric Residency Safety Council (PRSC) created an infrastructure for residents to participate in department safety efforts, review safety events, and act as leaders for safety initiatives. Annual surveys were distributed to graduate medical education trainees through the institution's patient safety center and the PRSC. Survey results of safety attitudes were compared over time within the pediatrics program and between pediatrics and nonpediatrics trainees at the institution. Resident-submitted safety reports were tracked through an institutional safety event repository. RESULTS: From 2013 to 2017, the percentage of residents who strongly agreed that they could submit a safety report doubled (from 35% [6 of 17] to 73% [22 of 30], P = .011). The average number of safety reports submitted by a pediatrics resident per year did not significantly change during this period (from 3.0 to 3.8, P = .11). In 2017, 90% of pediatrics residents (27 of 30) agreed or strongly agreed that their concerns would be addressed if they entered a safety report. CONCLUSIONS: The council addressed 5 of the 7 CLER Pathways to Excellence in patient safety.
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Educação de Pós-Graduação em Medicina/métodos , Internato e Residência , Segurança do Paciente , Centros Médicos Acadêmicos , Humanos , Aprendizagem , North Carolina , Pediatria/educação , Gestão da Segurança , Inquéritos e QuestionáriosRESUMO
BACKGROUND: As part of an empirical study investigating how life scientists think about ethical and societal implications of their work, and about life science research in general, we sought to elucidate barriers that scientists might face in considering such implications. METHOD: Between 2005 and 2007, we conducted a study consisting of phone interviews, focus groups, and a national survey of life scientists at biomedical research institutions. The study population included graduate students, postdoctoral fellows, faculty, clinical instructors, and research staff. We analyzed data through qualitative and quantitative methods. RESULTS: In analyzing the data, we found that life scientists do, in fact, face barriers to considering ethical and societal implications of research. We categorized these barriers as falling into four broad domains: (1) lack of awareness of ethical and societal implications; (2) lack of relevance of such concerns to their specific research; (3) self-confidence in their ability to resolve such concerns; and (4) aspects of the daily practice of science itself. CONCLUSIONS: Life science researchers experience elements inherent in their training and in the conduct of science as barriers to thinking about ethical and societal implications related to their work. These findings suggest areas in which research ethics educators, bioethicists, and the scientific community can focus their efforts to improve social and ethical accountability in research.