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1.
Telemed J E Health ; 2024 Jun 25.
Artigo em Inglês | MEDLINE | ID: mdl-38916876

RESUMO

Background: The COVID-19 pandemic accelerated the formal integration of telehealth into education curricula and training programs, prompting the need to reevaluate the current landscape and inform a research agenda. We developed a survey to assess telehealth education and training curriculum, competencies, certification, and research across pediatric medical centers. Methods: Questions were derived from a previously published national survey and de novo. The survey was distributed across national pediatric professional associations. Results: In total, 32 respondents representing medical centers (86.5%) were providing telehealth education and/or training. Most were internally developed didactic (78.6%) and experiential (64.3%) curricula. Respondents who included education and/or training in telehealth research protocols and conducted telehealth research (74%) reported mandatory or optional training in tele-research. A form of certification was preferred by most organizations (>60%). Conclusion: Telehealth education and training are key factors within current and future service development, provision, and research to demonstrate competencies and positively impact patient care.

2.
Artigo em Inglês | MEDLINE | ID: mdl-38558292

RESUMO

OBJECTIVE: Musculoskeletal ultrasound (MSUS) is widely used in adult rheumatology practice for diagnosis of arthritis and procedural guidance; however, it is not yet common practice in pediatric rheumatology. MSUS is advantageous to the pediatric population because it lacks radiation and eliminates need for sedation. This study aims to assess interest in, access to, and barriers to MSUS training in pediatric rheumatology fellowship programs in North America. METHODS: A survey was developed by pediatric rheumatology providers with experience in medical and/or MSUS education and distributed via REDCap anonymously in March 2022 (Supplementary Material). Eligible participants included current and recently graduated (<1 year) pediatric rheumatology fellows at a North American program. Descriptive statistics and bivariate analyses using design-based Pearson chi-squared tests were performed. RESULTS: Overall response rate was 78% (88/113), and 75% reported some form of MSUS training during fellowship. Only 36% indicated their program had a formal MSUS curriculum. Of those with MSUS training, 23% reported adult-only MSUS education. Eighty-four percent felt MSUS would be beneficial to their career. Major barriers to MSUS training included lack of MSUS-trained faculty, lack of time, and lack of hands-on MSUS sessions. Those who had access to MSUS training were significantly more interested in MSUS than those without (P = 0.0036). CONCLUSION: This study demonstrates that North American pediatric rheumatology fellows have a strong interest in learning MSUS, but they face significant challenges in accessing MSUS training (lack of MSUS-trained faculty, time, and access to hands-on training). MSUS should be incorporated into fellowship curriculum; however, implementation remains a challenge.

3.
Pediatr Res ; 95(3): 775-784, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37454186

RESUMO

BACKGROUND: The COVID-19 pandemic affected home and work routines, which may exacerbate existing academic professional disparities. Objectives were to describe the impact of the pandemic on pediatric faculty's work productivity, identify groups at risk for widening inequities, and explore mitigation strategies. METHODS: A cross-sectional study of faculty members was conducted at nine U.S. pediatric departments. Responses were analyzed by demographics, academic rank, and change in home caregiving responsibility. RESULTS: Of 5791 pediatric faculty members eligible, 1504 (26%) completed the survey. The majority were female (64%), over 40 years old (60%), and assistant professors (47%). Only 7% faculty identified as underrepresented in medicine. Overall 41% reported an increase in caregiving during the pandemic. When comparing clinical, administrative, research, and teaching activities, faculty reported worse 1-year outlook for research activities. Faculty with increased caregiving responsibilities were more likely to report concerns over delayed promotion and less likely to have a favorable outlook regarding clinical and research efforts. Participants identified preferred strategies to mitigate challenges. CONCLUSIONS: The COVID-19 pandemic negatively impacted pediatric faculty productivity with the greatest effects on those with increased caregiving responsibilities. COVID-19 was particularly disruptive to research outlook. Mitigation strategies are needed to minimize the long-term impacts on academic pediatric careers. IMPACT: The COVID-19 pandemic most negatively impacted work productivity of academic pediatric faculty with caregiving responsibilities. COVID-19 was particularly disruptive to short-term (1-year) research outlook among pediatric faculty. Faculty identified mitigation strategies to minimize the long-term impacts of the pandemic on academic pediatric career pathways.


Assuntos
COVID-19 , Pandemias , Humanos , Masculino , Feminino , Criança , Adulto , Estudos Transversais , Docentes de Medicina , Instituições Acadêmicas
4.
Am J Med Qual ; 38(5): 245-254, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37678302

RESUMO

Diagnostic error remains understudied and underaddressed despite causing significant morbidity and mortality. One barrier to addressing this issue remains provider discomfort. Survey studies have shown significantly more discomfort among providers in discussing diagnostic error compared with other forms of error. Whether the comfort in discussing diagnostic error differs depending on practice setting has not been previously studied. The objective of this study was to assess differences in provider willingness to discuss diagnostic error in the inpatient versus outpatient setting. A multicenter survey was sent out to 3881 providers between May and June 2018. This survey was designed to assess comfort level of discussing diagnostic error and looking at barriers to discussing diagnostic error. Forty-three percent versus 22% of inpatient versus outpatient providers (P = 0.004) were comfortable discussing short-term diagnostic error publicly. Similarly, 76% versus 60% of inpatient versus outpatient providers (P = 0.010) were comfortable discussing short-term diagnostic error privately. A higher percentage of inpatient (64%) compared with outpatient providers (46%) (P = 0.043) were comfortable discussing long-term diagnostic error privately. Forty percent versus 24% of inpatient versus outpatient providers (P = 0.018) were comfortable discussing long-term error publicly. No difference in barriers cited depending on practice setting. Inpatient providers are more comfortable discussing diagnostic error than their outpatient counterparts. More study is needed to determine the etiology of this discrepancy and to develop strategies to increase outpatient provider comfort.


Assuntos
Pacientes Internados , Pacientes Ambulatoriais , Humanos , Criança , Inquéritos e Questionários , Erros de Diagnóstico
5.
Epilepsy Res ; 197: 107231, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37751639

RESUMO

BACKGROUND: CDKL5 Deficiency Disorder (CDD) is a severe X-linked developmental and epileptic encephalopathy. Existing developmental outcome measures have floor effects and cannot capture incremental changes in symptoms. We modified the caregiver portion of a CDD clinical severity assessment (CCSA) and assessed content and response-process validity. METHODS: We conducted cognitive interviews with 15 parent caregivers of 1-39-year-old children with CDD. Caregivers discussed their understanding and concerns regarding appropriateness of both questions and answer options. Item wording and questionnaire structure were adjusted iteratively to ensure questions were understood as intended. RESULTS: The CCSA was refined during three rounds of cognitive interviews into two measures: (1) the CDD Developmental Questionnaire - Caregiver (CDQ-Caregiver) focused on developmental skills, and (2) the CDD Clinical Severity Assessment - Caregiver (CCSA-Caregiver) focused on symptom severity. Branching logic was used to ensure questions were age and skill appropriate. Initial pilot data (n = 11) suggested no floor effects. CONCLUSIONS: This study modified the caregiver portion of the initial CCSA and provided evidence for its content and response process validity.


Assuntos
Síndromes Epilépticas , Espasmos Infantis , Criança , Humanos , Lactente , Pré-Escolar , Adolescente , Adulto Jovem , Adulto , Cuidadores/psicologia , Espasmos Infantis/diagnóstico , Espasmos Infantis/genética , Síndromes Epilépticas/diagnóstico , Síndromes Epilépticas/genética , Inquéritos e Questionários , Proteínas Serina-Treonina Quinases/genética
6.
Int J Pediatr Otorhinolaryngol ; 172: 111693, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37579520

RESUMO

OBJECTIVES: The goal of this study was to assess the feasibility of the implementation of a mentoring network program based on expressed interest and the diverse composition of the otitis media research community in order to address attrition of the scientific workforce. METHODS: An online survey was sent to basic, translational, and clinical researchers with a known interest in otitis media. RESULTS: Of 509 eligible participants, 119 (23.4%) responded to the survey. Survey respondents had a diverse background by completed education, current job description, and membership in an underrepresented group in science. Most faculty respondents (76.4%) were willing to participate in the proposed program as mentors and faculty lecturers, or had early-career researchers or trainees in their research group who were willing to participate as mentees in the mentoring network. Scientific and non-scientific topics for inclusion in the training program were ranked, with immunology and inflammation, microbiology, science leadership and collaboration, mentoring, and grantsmanship as main foci of interest among respondents. CONCLUSION: Our survey results showed enthusiastic participation among responding otitis media researchers, indicating the feasibility of implementing a mentoring network program that will address workforce attrition, particularly among underrepresented groups in science.


Assuntos
Tutoria , Otite Média , Humanos , Tutoria/métodos , Mentores , Estudos de Viabilidade , Docentes
7.
Pediatrics ; 152(3)2023 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-37584105

RESUMO

BACKGROUND: Although significant research is devoted to transitions of care at discharge, few measures assess the quality of transitions into the hospital. Our objective was to develop a caregiver-reported quality measure to evaluate the pediatric hospital admission experience. METHODS: Measure development included: (1) adapting items from existing instruments; (2) an expert-consensus process to prioritize survey items; (3) cognitive pretesting with caregivers (n = 16); and (4) pilot testing revised items (n = 27). Subsequently, the survey was administered to caregivers at 2 children's hospitals and 1 general hospital from February 2020 through November 2021. Item reduction statistics and exploratory factor analysis were performed followed by confirmatory factor analysis. Domain scores were calculated using a top-box approach. Known-group validity and indices of model fit were evaluated. RESULTS: The initial survey included 25 items completed by 910 caregivers. Following item reduction and the exploratory factor analysis, 14 items were mapped to 4 domains: (1) Patient and Family Engagement, (2) Information Sharing, (3) Effectiveness of Care Delivery, and (4) Timeliness of Care. The confirmatory factor analysis and validity testing supported the factor structure. Domain scores ranged from 49% (95% confidence interval, 46-53) for Timelines of Care to 81% (95% confidence interval, 65-84) for Patient and Family Engagement, with significant differences between general and children's hospitals in Information Sharing and Effectiveness of Care Delivery. CONCLUSIONS: A 4-domain caregiver-reported hospital admission experience measure demonstrated acceptable validity and psychometric properties across children's and general hospitals. This measure can be used to evaluate the quality of transitions into the hospital and to focus quality improvement efforts.


Assuntos
Hospitalização , Alta do Paciente , Criança , Humanos , Inquéritos e Questionários , Cuidadores/psicologia , Melhoria de Qualidade , Psicometria , Reprodutibilidade dos Testes
8.
Pediatr Cardiol ; 2023 Jun 21.
Artigo em Inglês | MEDLINE | ID: mdl-37344559

RESUMO

Modern consensus panel guidelines recommend restriction from most organized sports for patients with moderate or severe aortic stenosis (AS). However, there is little published data on how frequently physicians deviate from guidelines, how well patients adhere to exercise restrictions, or the effect of restriction on patient-reported quality of life. In this study, we surveyed 93 subjects with AS and their cardiologists regarding participation in organized sports, physical activity, weightlifting, and exercise restriction. Subjects completed the pediatric quality of life inventory (PedsQL) and the pediatric cardiac quality of life inventory (PCQLI). We found that subjects with severe AS (n = 3) were commonly, but not universally, restricted from organized sports (n = 2, 66%). Subjects with moderate AS (n = 40) were rarely restricted from organized sports (n = 6, 17%). No physician-specific characteristics were associated with increased likelihood of recommending exercise restriction. Subjects were more likely to be restricted if they were older (16 years vs. 13 years, p 0.02) and had moderate versus mild AS (p 0.013). PCQLI scores for teens and young adults with AS (age 13-25) were lower than a comparison group of patients with mild congenital heart disease. For all age groups, the PedsQL social functioning score was lower for subjects with exercise restriction (p 0.052). In summary, cardiologists apply consensus guidelines leniently when restricting patients with moderate/severe AS from organized sports and weightlifting. Patients with AS routinely adhere to exercise restriction recommendations. Children and young adults with AS and exercise restriction have lower QOL scores in the social functioning domain.

9.
Health Expect ; 26(4): 1524-1535, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37062887

RESUMO

INTRODUCTION: Technological improvements alone have not led to the integration of genomic medicine across a broad range of diseases and populations. For genomic medicine to be successfully implemented across specialties and conditions, the challenges patients and caregivers experience need to be identified using a multi-faceted understanding of the context in which these obstacles occur and how they are experienced. Individuals affected by rare conditions, like Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), express numerous challenges with accessing genomic medicine. Many patients living with rare diseases seek information and find comfort in online health communities. METHODS: Social media conversations facilitated through online health communities are windows into patients' and caregivers' authentic experiences. To date, no other study has examined genomic medicine barriers by analysing the content of social media posts, yet the novel methodological approach of social media listening permits the analysis of virtual, organic conversations about lived experiences. RESULTS/CONCLUSIONS: Using a modified social-ecological model, this study found that social-structural and interpersonal barriers most frequently impede access to genomic medicine for patients and caregivers living with EDS and HSD. PATIENT OR PUBLIC CONTRIBUTION: Data were retrieved through social media conversations facilitated through publicly accessible health communities through Inspire, an online health community. Social media listening permits the analysis of virtual, organic conversations about lived experiences.


Assuntos
Síndrome de Ehlers-Danlos , Mídias Sociais , Humanos , Medicina Genômica , Síndrome de Ehlers-Danlos/genética
10.
Hosp Pediatr ; 13(5): 416-437, 2023 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-37078243

RESUMO

OBJECTIVES: Pediatric Hospital Medicine fellowship programs need to abide by Accreditation Council for Graduate Medical Education requirements regarding communication and supervision. Effective communication is critical for safe patient care, yet no prior research has explored optimal communication practices between residents, fellows, and attending hospitalists. Our objective is to explore communication preferences among pediatric senior residents (SRs), Pediatric Hospital Medicine fellows, and hospitalists on an inpatient team during clinical decision-making. METHODS: We conducted a cross-sectional survey study at 6 institutions nationwide. We developed 3 complementary surveys adapted from prior research, 1 for each population: 200 hospitalists, 20 fellows, and 380 SRs. The instruments included questions about communication preferences between the SR, fellow, and hospitalist during clinical scenarios. We calculated univariate descriptive statistics and examined paired differences in percent agreement using χ2 tests, accounting for clustering by institution. RESULTS: Response rates were: 53% hospitalists; 100% fellows; 39% SRs. Communication preferences varied based on role, scenario, and time of day. For most situations, hospitalists preferred more communication with the fellow overnight and when a patient or family is upset than expressed by fellows (P < .01). Hospitalists also desired more communication between the SR and fellow for an upset patient or family than SRs (P < .01), but all respondents agreed the SR should call the fellow for adverse events. More fellows and hospitalists felt that the SR should contact the fellow before placing a consult compared with SRs (95%, 86% vs 64%). CONCLUSIONS: Hospitalists, fellows, and SRs may have differing preferences regarding communication, impacting supervision, autonomy, and patient safety. Training programs should consider such perspectives when creating expectations and communication guidelines.


Assuntos
Médicos Hospitalares , Medicina , Humanos , Criança , Hospitais Pediátricos , Estudos Transversais , Comunicação , Bolsas de Estudo
12.
J Interprof Care ; 37(1): 100-108, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-34915788

RESUMO

Building the next generation of telehealth enabled professionals requires a mixture of team-based, interprofessional practice with novel technologies that connect providers and patients. Effective telehealth education is critical for the development of multidisciplinary training curricula to ensure workforce preparedness. In this study, we evaluated the impact of a formal telehealth education curriculum for interprofessional students through an online elective. Over 12 semesters, 170 students self-selected to enroll in the 3-credit hour interprofessional elective and took part in structured didactic, experiential and interprofessional learning opportunities. Mixed-method assessments show significant knowledge and confidence gains with students reflecting on their roles as future healthcare providers. The results from five years' worth of course data shows not only an opportunity to advance the individual knowledge of trainees, but a larger movement to facilitate changes in practice toward population health goals. Recent global health events have further highlighted the need for a rapid response to public health emergencies by highly trained provider teams who are able to utilize technology as the cornerstone for the continuity of care.


Assuntos
Relações Interprofissionais , Telemedicina , Humanos , Currículo , Pessoal de Saúde/educação , Estudos Interdisciplinares , Telemedicina/métodos
13.
Artigo em Inglês | MEDLINE | ID: mdl-36483407

RESUMO

Using a mixed-methods approach, we assessed the effect of the coronavirus disease 2019 (COVID-19) pandemic on antimicrobial stewardship programs (ASPs) in Colorado hospitals. ASP leaders reported decreased time and resources, reduced rigor of stewardship interventions, inability to complete new initiatives, and interpersonal challenges. Stewardship activities may be threatened during times of acute resource pressure.

14.
J Clin Microbiol ; 60(11): e0093022, 2022 Nov 16.
Artigo em Inglês | MEDLINE | ID: mdl-36218349

RESUMO

Endotracheal aspirate cultures (EACs) help diagnose lower respiratory tract infections in mechanically ventilated patients but are limited by contamination with normal microbiota and variation in laboratory reporting. Increased use of EACs is associated with increased antimicrobial prescribing, but the impact of microbiology reporting on prescribing practices is unclear. This study was a retrospective analysis of EACs from mechanically ventilated patients at Children's Hospital Colorado (CHCO) admitted between 1 January 2019 and 31 December 2019. Chart review was performed to collect all culture and Gram stain components, as well as antibiotic use directed to organisms in culture. Reporting concordance was determined for each organism using American Society for Microbiology guidelines. Days of therapy were calculated for overreported and guideline-concordant organisms. A multivariable model was used to assess the relationship between organism reporting and total days of therapy. Overall, 448 patients with 827 EACs were included in this study. Among patients with tracheostomy, 25 (8%) organisms reported from EACs were overreported and contributed 48 days of excess therapy, while 227 (29%) organisms from the EACs of endotracheally intubated patients were overreported, contributing 472 excess days of therapy. After adjustment, organism overreporting was associated with a >2-fold-higher rate of antimicrobial therapy than guideline-concordant reporting (incident rate ratio [IRR], 2.83; 95% confidence interval [CI], 1.23, 6.53; P < 0.05). Overreported organisms from respiratory cultures contribute to excess antimicrobial therapy exposure in mechanically ventilated patients. Microbiology laboratories have an opportunity to mitigate antimicrobial overuse through standardized reporting practices.


Assuntos
Respiração Artificial , Infecções Respiratórias , Humanos , Criança , Estudos Retrospectivos , Antibacterianos/uso terapêutico , Infecções Respiratórias/tratamento farmacológico
16.
Nurs Forum ; 57(6): 1536-1544, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-36316158

RESUMO

AIM: To analyze the concept of systems of communication in school nurse-led care coordination to develop an operational definition that will inform intervention development. BACKGROUND: Communication has been identified as an essential attribute in care coordination. However, previous concept analyses of care coordination did not clearly define systems of communication or consider the context of school-based care coordination. Defining and conceptualizing systems of communication has important implications for improving school nurse-led care coordination. METHODS: Concept analysis was conducted using Walker and Avant's eight-step concept analysis method. The literature was searched to identify supporting literature that was analyzed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist. RESULTS: Systems of communication in school nurse-led care coordination can be defined as systems wherein care team members, led by the school nurse, collaborate by communicating information and knowledge through an individualized healthcare plan that is student/family-centered and shared through information systems. Attributes require developing an individual health plan that incorporates care coordination needs, information sharing with student/family consent, and a clear delineation of team member roles. Consequences include student/family outcomes, team member knowledge, and efficiency and accuracy of information. CONCLUSIONS: Concept clarification and a synthesized definition allow for more effective measurement development for effective communication in school nurse-led care coordination. Students with healthcare needs in the school environment require systems of communication that efficiently work toward school nurse-led care coordination that addresses the student's health and academic outcomes.


Assuntos
Papel do Profissional de Enfermagem , Enfermeiras e Enfermeiros , Humanos , Comunicação , Instituições Acadêmicas
17.
Acad Pediatr ; 22(5): 858-866, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35318160

RESUMO

OBJECTIVE: To describe supervision preferences among pediatric hospitalists, Pediatric Hospital Medicine (PHM) fellows, and senior residents (SRs), and to better define the ideal role of a PHM fellow. METHODS: We conducted a cross-sectional survey study at 6 institutions nationwide. We developed 3 complementary surveys, one for each population (hospitalists, fellows, SRs). We calculated univariate descriptive and bivariate statistics for categorical variables using Chi-square tests with the Rao-Scott correction to account for clustering by institution. RESULTS: Survey respondents included 106 of 200 hospitalists (53%), all 20 fellows (100%), and 149 of 380 SRs (39%). Most hospitalists and all fellows preferred the supervising hospitalist to have 3+ years of experience or be fellowship-trained. Nearly all fellows preferred the attending round in-person providing progressive independence; while hospitalists and SRs desired greater attending presence on rounds. Hospitalists and fellows wanted more frequent communication when the attending does not round with the team, and more hospitalists desired at least 2 points of contact regardless of attending presence on rounds. Fifty-five percent of SRs reported experiencing much less/less autonomy when on with a fellow than when supervised by a hospitalist only. Regarding the fellow's role, most participants agreed SRs should lead rounds and contact the fellow first with questions. The majority agreed teaching should be a shared responsibility but lacked consensus about how to provide feedback. CONCLUSIONS: Study results reveal preferences about supervising fellows in this new subspecialty. Hospitalists, fellows, and SRs may have differing opinions regarding workflow, communication, and teaching, impacting team leadership and autonomy.


Assuntos
Medicina Hospitalar , Médicos Hospitalares , Criança , Estudos Transversais , Bolsas de Estudo , Médicos Hospitalares/educação , Hospitais Pediátricos , Humanos
18.
Pediatr Cardiol ; 43(4): 744-755, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34854941

RESUMO

Children with heart disease often experience symptoms and medically intense end-of-life care. Our study explored bereaved parents' perceptions of a "good death" via a mail survey to 128 parents of children with heart disease who died in two centers. Parental perceptions of end-of-life circumstances were assessed by closed-ended questions including level of agreement with the question: "would you say your child experienced a good death?" and open-ended comments were contributed. Medical therapies at end-of-life and mode of death were retrieved through chart review. Of 50 responding parents, 44 (response rate: 34%) responded to the "good death" question; 16 (36%) agreed strongly, 15 (34%) agreed somewhat, and 30% disagreed (somewhat: 7, 16%; strongly: 6, 14%). Half the children were on mechanical support and 84% intubated at death. Of children with cardiopulmonary resuscitation (CPR) at end-of-life, 71% of parents disagreed with the "good death" question compared with 22% of parents whose child died following discontinuation of life-sustaining therapy or comfort measures (OR 9.1, 95% CI 1.3, 48.9, p < 0.01). Parent-reported circumstances associated with disagreement with the "good death" question included cure-oriented goals-of-care (OR 16.6, 95% CI 3.0, 87.8, p < 0.001), lack of advance care planning (ACP) (OR 12.4 95% CI 2.1, 65.3 p < 0.002), surprise regarding timing of death (OR 11.7, 95% CI 2.6, 53.4 p < 0.002), and experience of pain (OR 42.1, 95% CI 2.3, 773.7 p < 0.02). Despite high medical intensity, many bereaved parents of children with cardiac disease agree a "good death" was experienced. A "good death" was associated with greater preparedness, ACP, non-cure-oriented goals-of-care, pain control, and CPR avoidance.


Assuntos
Cardiopatias , Assistência Terminal , Criança , Morte , Humanos , Dor , Pais
19.
J Genet Couns ; 31(2): 447-458, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34665896

RESUMO

The public health impact of genomic screening can be enhanced by cascade testing. However, cascade testing depends on communication of results to family members. While the barriers and facilitators of family communication have been researched following clinical genetic testing, the factors impacting the dissemination of genomic screening results are unknown. Using the pragmatic Electronic Medical Records and Genomics Network-3 (eMERGE-3) study, we explored the reported sharing practices of participants who underwent genomic screening across the United States. Six eMERGE-3 sites returned genomic screening results for mostly dominant medically actionable disorders and surveyed adult participants regarding communication of results with first-degree relatives. Across the sites, 279 participants completed a 1-month and/or 6-month post-results survey. By 6 months, only 34% of the 156 respondents shared their results with all first-degree relatives and 4% did not share with any. Over a third (39%) first-degree relatives were not notified of the results. Half (53%) of participants who received their results from a genetics provider shared them with all first-degree relatives compared with 11% of participants who received their results from a non-genetics provider. The most frequent reasons for sharing were a feeling of obligation (72%) and that the information could help family members make medical decisions (72%). The most common reasons indicated for not sharing were that the family members were too young (38%), or they were not in contact (25%) or not close to them (25%). These data indicate that the professional returning the results may impact sharing patterns, suggesting that there is a need to continue to educate healthcare providers regarding approaches to facilitate sharing of genetic results within families. Finally, these data suggest that interventions to increase sharing may be universally effective regardless of the origin of the genetic result.


Assuntos
Família , Genômica , Comunicação , Testes Genéticos/métodos , Humanos , Inquéritos e Questionários , Estados Unidos
20.
Telemed J E Health ; 28(8): 1178-1185, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34967677

RESUMO

Background: The COVID-19 pandemic accelerated the development of telehealth services and thus the need for telehealth education and training to support rapid implementation at scale. A national survey evaluating the current state of the telehealth landscape was deployed to organizational representatives, and included questions related to education and training. Materials and Methods: In the summer of 2020, 71 survey participants (31.8%) completed an online survey seeking to determine the utilization of telehealth services across institutional types and locations. This included data collected to specifically compare the rates and types of formal telehealth education provided before and during the pandemic. Results: Thirty percent of organizations reported no telehealth training before COVID-19, with those in suburban/rural settings significantly less likely to provide any training (55% vs. 82%) compared with urban. Pandemic-related training changes applied to 78% of organizations, with more change happening to those without any training before COVID-19 (95%). Generally, organizations offering training before the pandemic reported deploying COVID-19-related telehealth services, while a higher percentage of those without any training beforehand reported that they either did not plan on providing these services or were in the early planning stages. Discussion: Telehealth education is moving from elective to essential based on the need to prepare and certify the workforce to support high-quality telehealth services. Conclusions: As telehealth continues to evolve to meet the future health care service needs of patients and providers, education and training will advance to meet the needs of everyday clinical encounters and broader public health initiatives.


Assuntos
COVID-19 , Telemedicina , COVID-19/epidemiologia , Humanos , Pandemias , População Rural
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