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1.
Cancer ; 128(7): 1381-1391, 2022 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-34890045

RESUMO

BACKGROUND: Enthusiasm for precision oncology may obscure the psychosocial and ethical considerations associated with the implementation of tumor genetic sequencing. METHODS: Patients with advanced cancer undergoing tumor-only genetic sequencing in the National Cancer Institute Molecular Analysis for Therapy Choice (MATCH) trial were randomized to a web-based genetic education intervention or usual care. The primary outcomes were knowledge, anxiety, depression, and cancer-specific distress collected at baseline (T0), posteducation (T1) and after results (T2). Two-sided, 2-sample t tests and univariate and multivariable generalized linear models were used. RESULTS: Five hundred ninety-four patients (80% from NCI Community Oncology Research Program sites) were randomized to the web intervention (n = 293) or usual care (n = 301) before the receipt of results. Patients in the intervention arm had greater increases in knowledge (P for T1-T0 < .0001; P for T2-T0 = .003), but there were no significant differences in distress outcomes. In unadjusted moderator analyses, there was a decrease in cancer-specific distress among women (T0-T1) in the intervention arm but not among men. Patients with lower health literacy in the intervention arm had greater increases in cancer-specific distress and less decline in general anxiety (T0-T1) and greater increases in depression (T0-T2) in comparison with those receiving usual care. CONCLUSIONS: Web-based genetic education before tumor-only sequencing results increases patient understanding and reduces distress in women. Refinements to the intervention could benefit low-literacy groups and men.


Assuntos
Neoplasias , Ansiedade , Feminino , Humanos , Masculino , Oncologia , Neoplasias/genética , Neoplasias/terapia , Medicina de Precisão , Qualidade de Vida
2.
Am J Med Genet A ; 188(7): 1997-2004, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35338572

RESUMO

We sought to understand how the coronavirus disease 2019 (COVID-19) pandemic has affected the well-being, clinical training, and medical education for clinical trainees in medical genetics and genomics residency and fellowship programs. All clinical genetics trainees in the Accreditation Council for Graduate Medical Education (ACGME)-accredited training programs were invited to complete a survey. 31 out of 174 trainees completed the survey. With regards to well-being, 18 trainees reported increased anxiety, 10 had increased depression, 3 increased financial strain, 13 worsening work-life balance, and 13 worsening physical health. There was increased telehealth utilization in both outpatient (3% before the pandemic vs. 67% during the pandemic) and inpatient clinical encounters (0% vs. 29%). The most commonly reported challenges in telehealth use were inadequate physical examination and technical problems during visits. Twenty trainees believed that the pandemic has negatively impacted overall clinical training while none reported a positive impact. We concluded that the COVID-19 pandemic has negatively impacted most clinical genetics trainees in ACGME-accredited training programs. Telehealth has been increasingly used with some challenges. Further studies are needed on how to optimally integrate what we have learned into the training of medical genetics and genomics in the post-pandemic era.


Assuntos
COVID-19 , Genética Médica , Internato e Residência , COVID-19/epidemiologia , Bolsas de Estudo , Genômica , Humanos , Pandemias
3.
Curr Oncol Rep ; 24(6): 733-740, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35303253

RESUMO

PURPOSE OF REVIEW: Individuals carrying germline mutations in BRCA1/2 have unique psychosocial and educational needs that must be met to ensure informed clinical decision-making. In this review, we highlight the strategies used in clinical practice to support patients' needs as well as currently available pre- and post-disclosure support interventions. RECENT FINDINGS: Clinical risk communication is complicated by the uncertainty associated with gene penetrance, inconclusive results, variable effectiveness of surgical and screening interventions, and inadequate awareness of clinical genetics. Interventions to support patients' psychosocial needs, and strategies for effective and scalable clinical risk communication are in routine use and largely effective at meeting patients' needs. Research is underway to develop newer supportive resources; however, the inadequate representation of all mutation carriers persists. Effective clinical risk communication strategies, decision support aids, written educational materials, and supportive psychosocial tools can together have a large impact on meeting BRCA carriers' supportive needs.


Assuntos
Adaptação Psicológica , Neoplasias da Mama , Proteína BRCA1/genética , Neoplasias da Mama/genética , Feminino , Humanos , Mutação
4.
J Genet Couns ; 30(6): 1559-1569, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33969574

RESUMO

The advancement of genetic testing technologies has allowed for better diagnosis and management of patients, but also results in more variants of uncertain significance (VUSs) due to the increased number of genes being analyzed. There are more genetic tests available and more providers who do not specialize in genetics ordering genetic testing, but few studies examining how providers who do not specialize in genetics interpret VUSs. This study surveyed pediatric providers at a midwestern pediatric care center who do not specialize in genetics about their understanding of a mock genetic test report with a VUS result and whether their understanding of the result was associated with experience ordering genetic tests. Participants' preferences about content of the report and steps taken to understand the result were also examined. Of the 51 participants, 33% correctly answered both knowledge questions about the VUS result: one asking them to interpret the result and one asking them how they would explain the result to the patient. There was no association between answering both knowledge questions correctly and types of previous genetic tests ordered (p > .1 for 8 types of genetic tests), having received a genetic test report with a VUS result (p = .58), having referred patients to a genetics professional (p = .74), or feeling comfortable discussing a positive, negative, or VUS genetic test result (p > .4). This suggests that having previous experience ordering genetic tests does not contribute to the participants' knowledge about a variant of uncertain significance. Most participants reported that the amount of information in each section of the mock report was adequate. Participants were likely to reference multiple resources to better understand a VUS result, including published literature (82%), gene-specific databases (67%), and colleagues (63%). While these results cannot be generalized to all institutions, institutions can use the two knowledge questions to determine participants' understanding of genetic test results. This will help healthcare institutions determine methods that will best aide their providers who order genetic testing but do not specialize in genetics in learning more about the genetic testing process and better utilize results to improve patient care.


Assuntos
Testes Genéticos , Conhecimento , Criança , Predisposição Genética para Doença , Testes Genéticos/métodos , Humanos
5.
BMC Nurs ; 20(1): 31, 2021 Feb 12.
Artigo em Inglês | MEDLINE | ID: mdl-33579269

RESUMO

BACKGROUND: As human genetics knowledge develops, public genetic literacy needs to be increased, though the educational capacity for this purpose has not yet been fully developed. Under this circumstance, the daily work of public health nurses can be viewed as an opportunity to enhance public genetic literacy. However, in Japan, there is not only a lack of public knowledge of human genomics but also a lack of public health nurses' recognition about genomic literacy. A short-term education program was implemented as a pilot study. This study aimed to examine the effectiveness of the program to support public health nurses' activity aimed at promoting health services-related genetic literacy. METHODS: The genetics education program was implemented in December 2019, in Kagoshima, Japan. Twenty-three public health nurses cooperated with the research. The program was composed of a case study on consultation, a lecture on hereditary diseases, and a discussion on the role of public health nurses. Familial hypercholesterolemia was used as the topic of the case study. We evaluated scores for cognition, affect, and psychomotor characteristics related to their learning goals before and after the program using Wilcoxon signed-rank tests. Answers in the consultation were qualitatively analyzed. RESULTS: The mean cognitive score, capturing provision of explanations of hereditary disease, was 6.3 before the program but increased significantly to 9.3 after the program (p < 0.001). For the affective score, the goal of which was deepening interest in human genetics, the mean score increased significantly from 8.5 before to 11.0 after (p < 0.001). For the psychomotor score, addressing the need for genetic consultation, the mean score increased significantly from 4.4 before to 8.1 after (p < 0.001). Prominent themes extracted from descriptions on the worksheet post training included, "providing advice and accurate information on genetic disorders" and "referral to a specialized organization." CONCLUSIONS: Our findings indicated that this education program helps public health nurses be positively involved in human genetic disorders. Thus, they may connect to their local community to provide accurate genetics knowledge and advice for health management and promoting genetic literacy.

6.
Cardiol Young ; 30(2): 219-226, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31983361

RESUMO

Congenital heart defects (CHDs) occur in 8 of 1000 live-born children, making them common birth defects in the adolescent population. CHDs may have single gene, chromosomal, or multifactorial causes. Despite evidence that patients with CHD want information on heritability and genetics, no studies have investigated the interest or knowledge base in the adolescent population. This information is necessary as patients in adolescence take greater ownership of their health care and discuss reproductive risks with their physicians. The objectives of this survey-based study were to determine adolescents' recall of their own heart condition, to assess patient and parent perception of the genetic contribution to the adolescent's CHD, and to obtain information about the preferred method(s) for education. The results show that adolescent patients had good recall of their type of CHD. Less than half of adolescents and parents believed their CHD had a genetic basis or was heritable; however, adolescents with a positive family history of CHD were more likely to believe that their condition was genetic (p = 0.0005). The majority of patients were interested in receiving additional genetics education and preferred education in-person and in consultation with both parents and a physician. The adolescents who felt most competent to have discussions with their doctors regarding potential causes of their heart defect previously had a school science course which covered topics in genetics. These results provide insight into adolescents' perceptions and understanding about their CHD and genetic risk and may inform the creation and provision of additional genetic education.


Assuntos
Predisposição Genética para Doença , Conhecimentos, Atitudes e Prática em Saúde , Cardiopatias Congênitas , Pais , Adolescente , Feminino , Humanos , Indiana , Masculino , Relações Pais-Filho , Fatores de Risco , Inquéritos e Questionários
7.
J Genet Couns ; 27(4): 968-977, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29280038

RESUMO

The number of disorders for which genetic testing is available has increased nearly 500% in the past 15 years. Access to genetic tests and services often hinges on physicians' ability to identify patients at risk for genetic disease and provide appropriate testing and counseling or refer to genetic specialists. Recent research demonstrates the need for referrals to genetic specialists by showing that many physicians lack skills required to perform appropriate genetic services, such as making proper risk assessments, providing genetic counseling, ordering genetic testing and interpreting results. However, little research exists on physicians' awareness and utilization of genetic services. In this study, an electronic survey evaluating practicing physicians' awareness of, utilization of and perceived barriers to genetic services in Texas, and interest in learning more about genetics and genetic services was distributed via state physician organizations. Of the 157 participants, approximately half reported they were moderately or very aware of genetic testing and services in their area. Very few reported awareness of telemedicine services. Over two-thirds reported never or rarely referring to genetic counselors or other genetic specialists, despite 75% reporting they had noticed an increased impact of genetics on their field and 61% reporting they had discussed genetics more in their day-to-day practice in the last 5-10 years. Only 20% reported genetics was very integral to their specialty. Over three-fourths of all participants indicated interest in learning more about genetics, genetic testing, and genetic services. Among the most frequently chosen barriers to genetic counselors were awareness-related barriers such as not knowing how to refer to a genetic counselor. Responses to many items varied significantly by medical specialty. The results identify a need to increase awareness of genetic services and referral logistics. Specific findings can help direct outreach efforts to educate clinicians, such as developing clinically meaningful, specialty-specific educational objectives.


Assuntos
Conscientização , Testes Genéticos , Padrões de Prática Médica , Adulto , Feminino , Aconselhamento Genético , Serviços em Genética , Humanos , Masculino , Pessoa de Meia-Idade , Médicos/psicologia , Encaminhamento e Consulta , Medição de Risco , Sociedades Médicas , Inquéritos e Questionários , Texas
8.
Nurs Health Sci ; 19(1): 66-74, 2017 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-27510609

RESUMO

Recent advances in genomics and related technologies have the potential to improve health care throughout the world. In this cross-sectional study, we examine genetics education, knowledge, and genetics-related experiences among the nurses and physicians who provide primary care in a Brazilian city. Fifty-four healthcare professionals from family health units participated in the study (response rate: 90%). Data were collected using a structured 36-item questionnaire divided into five axes: sociodemographic data and academic background; genetics education; genetics knowledge; genetics-related experiences in family practice; and knowledge regarding the National Policy for Comprehensive Care in Clinical Genetics in the Unified Health System. Although most participants (85.2%) acknowledged receiving some genetic content during their undergraduate education, the majority (77.8%) advised that they did not feel prepared to deliver genomics-based health care in primary care. The results suggest that nurses and physicians often lack the knowledge to provide genomics-based health care in primary care. Therefore, continuing education in genetics/genomics should be provided to primary healthcare professionals in order to enhance family practice and compliance with national policies.


Assuntos
Competência Clínica/normas , Genética/educação , Conhecimentos, Atitudes e Prática em Saúde , Atenção Primária à Saúde/métodos , Adulto , Brasil , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros/normas , Médicos/normas , Atenção Primária à Saúde/normas , Inquéritos e Questionários
9.
J Adv Nurs ; 72(6): 1430-40, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26073718

RESUMO

AIMS: To gain an in-depth understanding of the perceptions of young adults with sickle cell disease and sickle cell trait about parenthood and participating in the CHOICES randomized controlled trial that used computer-based, educational programmes. BACKGROUND: In the USA, there is insufficient education to assure that all young adults with sickle cell disease or sickle cell trait understand genetic inheritance risks and reproductive options to make informed reproductive decisions. To address this educational need, we developed a computer-based, multimedia program (CHOICES) and reformatted usual care into a computer-based (e-Book) program. We then conducted a two-year randomized controlled trial that included a qualitative component that would deepen understanding of young adults' perceptions of parenthood and use of computer-based, educational programmes. DESIGN: A qualitative descriptive approach completed after a randomized controlled trial. METHODS: Sixty-eight men and women of childbearing age participated in semi-structured interviews at the completion of the randomized controlled trial from 2012-2013. Thematic content analysis guided the qualitative description. RESULTS/FINDINGS: Three main themes were identified: (1) increasing knowledge and new ways of thinking and behaving; (2) rethinking parenting plans; and (3) appraising the program design and delivery. Most participants reported increased knowledge and rethinking of their parenting plans and were supportive of computer-based learning. Some participants expressed difficulty in determining individual transmission risks. CONCLUSION: Participants perceived the computer programs as beneficial to their learning. Future development of an Internet-based educational programme is warranted, with emphasis on providing tailored education or memory boosters about individual transmission risks.


Assuntos
Anemia Falciforme , Comportamento de Escolha , Educação de Pacientes como Assunto , Traço Falciforme , Adulto , Feminino , Humanos , Masculino , Multimídia , Percepção , Interface Usuário-Computador , Adulto Jovem
10.
Am J Med Genet C Semin Med Genet ; 166C(4): 370-80, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25424610

RESUMO

The syndromal and genetic biology reported and reviewed herein can be studied, analyzed and reported by any "GP" with the required gifts, enthusiasm, drive, and ability to work with collaborators of goodwill at University centers near or far; and most importantly, to continue lifelong education and retraining. Beginning individually in rural Boulder, MT in 1947 it was possible to train in phenotype analysis with methods available to any GP, somewhat later to enlist collaborators at the Universities of Wisconsin and Washington, and finally to establish a genetic services program at a regional medical center (Shodair Children's Hospital in Helena) with fiscal support from the State Legislature amending and extending the prior Newborn Screening Act of Montana. With such financial stability it was possible to attract another physician, genetic counselors and a cytogeneticist to the Shodair Program. This genetic center now has expanded to a staff of 22 with advanced capabilities in cytogenetics, biochemistry and molecular biology (q.v. Elias in this issue). In these past 50 years then I have seen the Montana Genetics Program grow from humble rural beginnings to the amazing center it is now providing statewide outreach services, genetic education and the most advanced diagnostics and research. Now, it may not be inappropriate for me to recommend the Montana model for implementation in other genetically underserved regions throughout the United States.


Assuntos
Anormalidades Congênitas/diagnóstico , Anormalidades Congênitas/genética , Doenças Genéticas Inatas/diagnóstico , Doenças Genéticas Inatas/genética , Pesquisa , Serviços de Saúde Rural , Anormalidades Congênitas/história , Doenças Genéticas Inatas/história , História do Século XX , História do Século XXI , Humanos , Montana , Pesquisa/história , Síndrome
11.
Health Educ Behav ; : 10901981241266849, 2024 Jul 30.
Artigo em Inglês | MEDLINE | ID: mdl-39081055

RESUMO

Elective genetic testing (EGT) programs that provide pharmacogenomic information to guide medication management and screen for medically actionable disease predispositions are emerging in a number of health systems. Primary care providers (PCPs) are at the forefront of test initiation, patient education, and management of EGT results. However, little research has examined the experiences of PCPs in health systems offering clinical EGT. We conducted semi-structured interviews, a sub-study of the larger mixed-methods Imagenetics Initiative, with 16 PCPs at a health system in the Midwest with a clinical EGT program supported by provider education, automated clinical decision support, and enhanced access to genetic specialists. The purpose of these interviews was to understand perceptions about the benefits and barriers of implementing EGT in clinical practice. Thematic analysis indicated that EGT is conceptualized similar to traditional diagnostic services. PCPs were generally favorable toward EGT; however, targeted education did not dispel misconceptions about the goals, results, and limitations of EGT. Most PCPs endorsed the potential utility of EGT. Pharmacogenomic profiling was seen as having more immediate impact for patients than screening for monogenic disease risks. PCPs reported that they weighed discussions about EGT against time limitations and the need to prioritize patients' existing health concerns. Regardless of their education levels and familiarity with genetics, PCPs desired additional educational resources and greater access to genetic specialists. Our study provides unique insight into PCPs' experiences with clinical EGT in health systems that have adopted EGT and highlights the practical challenges and potential opportunities of EGT integration.

12.
J Community Genet ; 2024 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-39120782

RESUMO

Individualised treatment, including genetic services, calls for an increased role of primary healthcare practitioners (pHCPs) in diagnosing and caring for individuals with genetic conditions. PHCPs' genetics knowledge and practices must be current to ensure adequate care. A scoping review was conducted to explore peer-reviewed articles on the knowledge, attitudes, and practices (KAPs) of pHCPs concerning genetics, genetic testing, and genetic services. English-language human genetics/genomics articles published between January 1990 and April 2022 in low- and middle-income countries (LMICs) were included. Twenty-eight articles from 16 LMICs in five World Health Organisation (WHO)-defined regions met the inclusion criteria and showed a steady increase in publications, with varied contributions by region. The Eastern Mediterranean Region (EMR) contributed the most articles (n = 8), while the Western Pacific Region (WPR) had the least (n = 2). Brazil published the most articles (n = 6), while ten countries contributed one article each. Fifteen articles included knowledge, 19 included attitudes towards genetics, and eight included genetic practices. The findings indicate that pHCPs in LMICs lack knowledge of genetics and its applications despite their positive outlook towards genetic services. Barriers such as limited resources, financial constraints, and cultural or religious beliefs hinder access to genetic services. Enhancing pHCPs' genetics education is vital for improving care for those affected by genetic conditions. The scarcity of literature in LMICs emphasises the need for research on educational interventions to improve patient outcomes and family support.

13.
J Community Genet ; 14(2): 163-174, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36449144

RESUMO

In Japan, cancer education has been initiated with children as a measure against cancer. Cancer genome medicine, which is a social implementation, includes aspects of genetic medicine. For this reason, it is assumed that content related to "genetics" is also necessary in cancer education. To investigate the actual situation regarding the teaching of genetics in cancer education, we conducted a questionnaire survey of schoolteachers involved in cancer education; these schoolteachers belonged to the model school of the Cancer Education Comprehensive Support Project. Regarding genetic content, we asked questions related to two aspects: "the molecular genetic mechanisms of cancer" and "the phenomenon of sharing cancer in the family." The results showed that about 60% of the teachers had experience teaching content related to the molecular genetic mechanisms of cancer and the phenomenon of sharing cancer in the family. While many teachers felt that teaching genetics in cancer education was necessary, they also felt that there were difficulties in doing so: 65.2% for content related to the molecular genetic mechanisms of cancer and 70.8% for that related to the phenomenon of sharing cancer in the family. It is important to properly treat cancer as a genetic disease, and it is necessary to examine government curriculum guidelines and establish a collaborative system among other subjects. In addition, the involvement of specialists in genetic medicine and psychosocial support is expected to improve teachers' genetic literacy as well as to communicate with students with consideration for their family history.

14.
Urol Clin North Am ; 48(3): 311-322, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34210487

RESUMO

Germline testing for prostate cancer (PCA) is revolutionizing PCA care. Two PARP inhibitors are FDA approved for men with metastatic, castration-resistant disease after progression on first-line therapies. In the screening setting, genetic test results may inform initiation and screening strategies. For men with early-stage disease, literature is emerging on the possible role of germline testing in active surveillance discussions. As such, urologists and oncologists must gain working knowledge of the principles and practice of germline testing and hereditary cancer implications for responsible implementation. Here the authors outline key learning areas and practice strategies for responsible dissemination of PCA germline testing.


Assuntos
Testes Genéticos/normas , Fidelidade a Diretrizes , Pessoal de Saúde/educação , Neoplasias da Próstata/genética , Aconselhamento Genético , Mutação em Linhagem Germinativa , Humanos , Consentimento Livre e Esclarecido , Masculino , Medicina de Precisão
15.
Eur J Med Genet ; 64(1): 104119, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33285312

RESUMO

PURPOSE: Genetic research, via the mainstream media, presents the public with novel, profound findings almost on a daily basis. However, it is not clear how much laypeople understand these presentations and how they integrate such new findings into their knowledge base. Genetic knowledge (GK), existing causal beliefs, and genetic essentialist tendencies (GET) have been implicated in such processes; the current study assesses the relationships between these elements and how brief presentations of media releases of scientific findings about genetics are consumed and affect the readers. METHODS: An Australian national survey of GK, GET, and existing causal beliefs about health phenomena (heart disease and obesity) was conducted. Participants were also exposed to news headlines that offered genetic and non-genetic partial explanations of the same health phenomena and reported their evaluations of these headlines, as well as the effects of the headlines on their personal understanding of the health phenomena. RESULTS: GK was negatively-associated with GET. Whereas GK did not directly predict the evaluation and effects of the genetic headlines, GET did. GK predicted the effects of the headlines indirectly via GET and via GET and existing causal beliefs. CONCLUSION: GET seem to predict unwarranted effects of exposure to news headlines about genetic science, whereas GK seems to indirectly mitigate the same unwarranted effects.


Assuntos
Compreensão , Genética/educação , Letramento em Saúde , Atitude , Austrália , Viés , Predisposição Genética para Doença/psicologia , Humanos , Meios de Comunicação de Massa , Inquéritos e Questionários
16.
Front Genet ; 12: 793834, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-35082836

RESUMO

Introduction: In this study we aimed to perform the first research on the current state of compulsory basic and clinical courses in genetics for medical students offered at medical faculties in six Balkan countries with Slavic languages (Bosnia and Herzegovina, Croatia, Montenegro, North Macedonia, Serbia, and Slovenia). Materials and Methods: The study was conducted from June to September 2021. One representative from each country was invited to collect and interpret the data for all medical faculties in their respective country. All representatives filled a questionnaire, which consisted of two sets of questions. The first set of questions was factual and contained specific questions about medical faculties and design of compulsory courses, whereas the second set of questions was more subjective and inquired the opinion of the representatives about mandatory education in clinical medical genetics in their countries and internationally. In addition, full course syllabi were analysed for course aims, learning outcomes, course content, methods for student evaluation and literature. Results: Detailed analysis was performed for a total of 22 medical faculties in Bosnia and Herzegovina (6), Croatia (4), Montenegro (1), North Macedonia (3), Serbia (6), and Slovenia (2). All but the two medical faculties in Slovenia offer either compulsory courses in basic education in human genetics (16 faculties/courses) or clinical education in medical genetics (3 faculties/courses). On the other hand, only the medical faculty in Montenegro offers both types of education, including one course in basic education in human genetics and one in clinical education in medical genetics. Most of the basic courses in human genetics have similar aims, learning outcomes and content. Conversely, clinical courses in medical genetics are similar concerning study year position, number of contact hours, ECTS (European Credit Transfer and Accumulation System) and contents, but vary considerably regarding aims, learning outcomes, ratio of types of classes, teaching methods and student evaluation. Conclusion: Our results emphasise the need for future collaboration in reaching a consensus on medical genetics education in Balkan countries with Slavic languages. Further research warrants the analysis of performance of basic courses, as well as introducing clinical courses in medical genetics to higher years of study across Balkan countries.

17.
SAGE Open Med ; 8: 2050312120960656, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33014373

RESUMO

OBJECTIVES: Creating a diverse and inclusive symbiotic society is specified in the sustainable development goals. In a symbiotic society, support for those who need, it is called "reasonable support." However, it is unclear in the classroom that many children understand "reasonable" as a consideration to support children with special needs. The aim of this study is to identify the actual understanding of junior high school students and the challenges related to genetic diversity through school health teachers in readiness for developing a symbiotic society. METHODS: A focus group interview was conducted for five school health teachers working in public junior high schools to identify the perspectives of their feeling about the current understanding of children in regard to genetics and diversity. Participants were recruited who agreed to engage voluntarily in this research. A qualitative descriptive design was used in this study. RESULTS: The results of the analysis revealed three categories consisting of 67 codes and 10 subcategories. Three categories were identified: I-understanding the heterogeneity and diversity of children's ambivalent minds; II-limitation of school health teachers' involvement in genetics and diversity-related issues; and III-importance for children to understand heterogeneity and diversity to build life skills. CONCLUSIONS: School health teachers remarked on the limitations of learning and teaching genetics and diversity. They paid attention to the flexibility of a child. It suggests that the purpose of genetic education is to develop children's life skills with the flexibility to live in the future. There is a need to consider new genetic education for school health teachers and students to learn about diversity.

18.
Front Genet ; 10: 712, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31428139

RESUMO

To study and improve the competences of health-care workers in the domain of genetics, attention needs to be paid to attitudes, activities, knowledge, and changes in performance. Three decades of research on genetic education for non-genetic-experts in Amsterdam are summarized, including both local and international collaborative efforts. Evidence shows that assessment of learners' needs and the definition of competences have driven slow but gradual improvement in genetics competence among non-geneticists. Attitudes and behavior are mainly influenced by face-to-face training. eLearning modules can serve to increase knowledge in a large number of participants in a rapidly changing field. Materials developed for accredited courses will sometimes be used for reference or just in time learning. Taking a theoretically informed evaluation approach, it has been possible to demonstrate satisfaction, improved knowledge, and self-reported behavioral change, although measuring effects on health-care practice and population health remains challenging. A flexible approach is needed to serve learners' needs in a field with many upcoming challenges.

19.
J Community Genet ; 10(1): 51-60, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-29508367

RESUMO

Healthcare disparities exist in the provision of cancer genetic services including genetic counseling and testing related to BRCA1/2 mutations. To address this in a community health setting a screening tool was created to identify high-risk women. This study evaluates the implementation of the tool and identifies opportunities for improved cancer genetic screening, including regular clinician education. A mixed-method approach was used to evaluate clinician utilization of the screening tool at Planned Parenthood affiliates. Novel surveys that evaluated acceptance and implementation were administered to clinicians (n = 14) and semi-structured interviews (n = 6) were used to explore clinicians' perspectives and identify gaps in its utilization. Educational modules that addressed gaps were developed, implemented, and evaluated using a post-education survey (n = 8). Clinicians reported confidence in administering and interpreting the screening tool, but reported less confidence in their knowledge of cancer genetics and ability to connect clients with genetic counseling and testing (p = .003). Educational modules resulted in significant gains in clinician knowledge on genetic topics (p < .05) and increased self-reported confidence in connecting clients with genetic services. The modules reinforced the belief that genetic testing is beneficial for patients at increased risk (p = .001) and is important to inform subsequent medical management (p = .027). While building community clinicians' capacity to connect clients with genetic services is crucial, it is challenged by knowledge and confidence gaps in discussions of genetic services with clients. Consistent genetic-focused education with non-genetic clinicians can improve confidence and knowledge, enabling a more effective screening program in community health settings.

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