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1.
Cancer Causes Control ; 35(8): 1201-1212, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38700724

RESUMO

PURPOSE: Genetic testing for gene mutations which elevate risk for breast cancer is particularly important for women diagnosed at a young age. Differences remain in access and utilization to testing across social groups, and research on the predictors of interest in genetic testing for women diagnosed at a young age is limited. METHODS: We examined the relationships between subjective social status (SSS) and variables previously identified as possible predictors of genetic testing, including genome sequencing knowledge, genetic worry, cancer worry, health consciousness, decision-making preferences, genetic self-efficacy, genetic-related beliefs, and subjective numeracy, among a cohort of women who were diagnosed with breast cancer at a young age. RESULTS: In this sample (n = 1,076), those who had higher SSS had significantly higher knowledge about the limitations of genome sequencing (Odds Ratio (OR) = 1.11; 95% CI = 1.01-1.21) and significantly higher informational norms (OR = 1.93; 95% CI = 1.19-3.14) than those with lower SSS. Similarly, education (OR = 2.75; 95% CI = 1.79-4.22), health status (OR = 2.18; 95% CI = 1.44-3.31) were significant predictors among higher SSS women compared to lower SSS women in our multivariate analysis. Lower SSS women with low self-reported income (OR = 0.13; 95% CI = 0.08-0.20) had lower odds of genetic testing interest. Our results are consistent with some prior research utilizing proxy indicators for socioeconomic status, but our research adds the importance of using a multidimensional indicator such as SSS to examine cancer and genetic testing predictor outcomes. CONCLUSION: To develop interventions to improve genetic knowledge, researchers should consider the social status and contexts of women diagnosed with breast cancer at a young age (or before 40 years old) to ensure equity in the distribution of genetic testing benefits.


Assuntos
Neoplasias da Mama , Testes Genéticos , Classe Social , Humanos , Feminino , Neoplasias da Mama/genética , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/psicologia , Adulto , Pessoa de Meia-Idade , Conhecimentos, Atitudes e Prática em Saúde , Adulto Jovem , Predisposição Genética para Doença , Tomada de Decisões
2.
J Pediatr ; : 114366, 2024 Oct 18.
Artigo em Inglês | MEDLINE | ID: mdl-39428089

RESUMO

OBJECTIVE: To uncover the values and preferences of the caregivers for children with medical complexity (CMC), using the test case of surgical treatment decision-making for pediatric neuromuscular scoliosis (NMS) that will inform the future development of a decision support tool in this population. STUDY DESIGN: We conducted a qualitative study of semi-structured interviews of English- and Spanish-speaking caregivers of children with NMS from two geographically distinct children's hospitals. We used purposive sampling of language and treatment options selected to capture diverse experiences. Analysis was based on grounded theory with synthesized caregiver values and preferences themes. RESULTS: From 47 participants, we completed 41 interviews (9 in Spanish). Caregivers had a mean age of 43.2 years, were mostly White (66%), and had children with a mean age of 15.6. 64% chose surgery. The following values and preferences were important to many caregivers: reducing scoliosis-related pain, minimizing mobility limitations to optimize socio-emotional quality of life, limiting the impact of comorbidities on overall quality of life, information provided by peer support, the uncertainty of outcomes due to underlying comorbidities, and the uncertainty related to the anticipated progression of their child's scoliosis curve. Caregivers experienced immense uncertainty related to treatment outcomes due to their child's comorbidities. CONCLUSIONS: Caregivers of CMC may benefit from decision support that includes both values clarification exercises to help caregivers identify what of the many possible values and preferences are important to them and novel methods to communicate uncertainty in the care of CMC.

3.
Am J Public Health ; 114(11): 1207-1211, 2024 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-39356994

RESUMO

Interventions designed to address COVID-19 needed to be rapidly scaled up to the population level, and to address health equity by reaching historically marginalized populations most affected by the pandemic (e.g., racial/ethnic minorities and rural and low socioeconomic status populations). From February 2021 to June 2022, SCALE-UP Utah used text messaging interventions to reach 107 846 patients from 28 clinics within seven safety-net health care systems. Interventions provided informational and motivational messaging regarding COVID-19 testing and vaccination, and were developed using extensive community partner input. (Am J Public Health. 2024;114(11):1207-1211. https://doi.org/10.2105/AJPH.2024.307770).


Assuntos
COVID-19 , Provedores de Redes de Segurança , Humanos , COVID-19/prevenção & controle , COVID-19/epidemiologia , Provedores de Redes de Segurança/organização & administração , SARS-CoV-2 , Envio de Mensagens de Texto , Gestão da Saúde da População , Utah , Vacinas contra COVID-19/administração & dosagem , Pandemias/prevenção & controle , Equidade em Saúde , Teste para COVID-19
4.
Cancer Control ; 31: 10732748241272727, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39420801

RESUMO

BACKGROUND: We examined neighborhood characteristics concerning breast cancer screening annual adherence during the COVID-19 pandemic. METHODS: We analyzed 6673 female patients aged 40 or older at increased inherited cancer risk in 2 large health care systems (NYU Langone Health [NYULH] and the University of Utah Health [UHealth]). Multinomial models were used to identify predictors of mammogram screening groups (non-adherent, pre-pandemic adherent, pandemic period adherent) in comparison to adherent females. Potential determinants included sociodemographic characteristics and neighborhood factors. RESULTS: Comparing each cancer group in reference to the adherent group, a reduced likelihood of being non-adherent was associated with older age (OR: 0.97, 95% CI: 0.95, 0.99), a greater number of relatives with cancer (OR: 0.80, 95% CI: 0.75, 0.86), and being seen at NYULH study site (OR: 0.42, 95% CI: 0.29, 0.60). More relatives with cancer were correlated with a lesser likelihood of being pandemic period adherent (OR: 0.89, 95% CI: 0.81, 0.97). A lower likelihood of being pre-pandemic adherent was seen in areas with less education (OR: 0.77, 95% CI: 0.62, 0.96) and NYULH study site (OR: 0.35, 95% CI: 0.22, 0.55). Finally, greater neighborhood deprivation (OR: 1.47, 95% CI: 1.08, 2.01) was associated with being non-adherent. CONCLUSION: Breast screening during the COVID-19 pandemic was associated with being older, having more relatives with cancer, residing in areas with less educational attainment, and being seen at NYULH; non-adherence was linked with greater neighborhood deprivation. These findings may mitigate risk of clinically important screening delays at times of disruptions in a population at greater risk for breast cancer.


Breast Cancer Screening Adherence in the US During COVID-19: We examined predictors of breast cancer screening adherence during COVID-19 at two large healthcare systems. Adherence was associated with older age, having more relatives with a cancer history, and living in areas with less educational attainment. Nonadherence was associated with greater neighborhood deprivation.


Assuntos
Neoplasias da Mama , COVID-19 , Detecção Precoce de Câncer , Humanos , Feminino , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/genética , COVID-19/epidemiologia , Pessoa de Meia-Idade , Detecção Precoce de Câncer/estatística & dados numéricos , Adulto , Estados Unidos/epidemiologia , Predisposição Genética para Doença , Mamografia/estatística & dados numéricos , Idoso , Cooperação do Paciente/estatística & dados numéricos , SARS-CoV-2 , Fatores de Risco
5.
Ann Behav Med ; 2024 Sep 26.
Artigo em Inglês | MEDLINE | ID: mdl-39417815

RESUMO

BACKGROUND: Inaccurate cancer news can have adverse effects on patients and families. One potential way to minimize this is through media literacy training-ideally, training tailored specifically to the evaluation of health-related media coverage. PURPOSE: We test whether an abbreviated health-focused media literacy intervention improves accuracy discernment or sharing discernment for cancer news headlines and also examine how these outcomes compare to the effects of a generic media literacy intervention. METHODS: We employ a survey experiment conducted using a nationally representative sample of Americans (N = 1,200). Respondents were assigned to either a health-focused media literacy intervention, a previously tested generic media literacy intervention, or the control. They were also randomly assigned to rate either perceived accuracy of headlines or sharing intentions. Intervention effects on accurate and inaccurate headline ratings were tested using OLS regressions at the item-response level, with standard errors clustered on the respondent and with headline fixed effects. RESULTS: We find that the health-focused media literacy intervention increased skepticism of both inaccurate (a 5.6% decrease in endorsement, 95% CI [0.1%, 10.7%]) and accurate (a 7.6% decrease, 95% CI [2.4%, 12.8%]) news headlines, and accordingly did not improve discernment between the two. The health-focused media literacy intervention also did not significantly improve sharing discernment. Meanwhile, the generic media literacy intervention had little effect on perceived accuracy outcomes, but did significantly improve sharing discernment. CONCLUSIONS: These results suggest further intervention development and refinement are needed before scaling up similarly targeted health information literacy tools, particularly focusing on building trust in legitimate sources and accurate content.


This study investigated how media literacy training affects people's ability to accurately judge cancer-related news. Specifically, we tested whether health-specific media literacy guidelines could help people better identify accurate versus inaccurate cancer news headlines compared to a set of general media literacy guidelines. Using a survey with 1,200 Americans, participants were divided into three groups: one received health-focused media literacy training, another received general media literacy training, and a third group had no training. Participants were then asked to evaluate or consider sharing a series of accurate and inaccurate news headlines. The study found that the health-focused media literacy training made people more skeptical of both accurate and inaccurate headlines. Meanwhile, the general media literacy guidelines had little effect on perceived accuracy of headlines but did significantly improve the quality of news people said they would share, on average. The findings suggest that more work is needed to improve media literacy programs, especially those focused on health news, to help people trust and recognize accurate information.

6.
J Biomed Inform ; 149: 104568, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38081564

RESUMO

OBJECTIVE: This study aimed to 1) investigate algorithm enhancements for identifying patients eligible for genetic testing of hereditary cancer syndromes using family history data from electronic health records (EHRs); and 2) assess their impact on relative differences across sex, race, ethnicity, and language preference. MATERIALS AND METHODS: The study used EHR data from a tertiary academic medical center. A baseline rule-base algorithm, relying on structured family history data (structured data; SD), was enhanced using a natural language processing (NLP) component and a relaxed criteria algorithm (partial match [PM]). The identification rates and differences were analyzed considering sex, race, ethnicity, and language preference. RESULTS: Among 120,007 patients aged 25-60, detection rate differences were found across all groups using the SD (all P < 0.001). Both enhancements increased identification rates; NLP led to a 1.9 % increase and the relaxed criteria algorithm (PM) led to an 18.5 % increase (both P < 0.001). Combining SD with NLP and PM yielded a 20.4 % increase (P < 0.001). Similar increases were observed within subgroups. Relative differences persisted across most categories for the enhanced algorithms, with disproportionately higher identification of patients who are White, Female, non-Hispanic, and whose preferred language is English. CONCLUSION: Algorithm enhancements increased identification rates for patients eligible for genetic testing of hereditary cancer syndromes, regardless of sex, race, ethnicity, and language preference. However, differences in identification rates persisted, emphasizing the need for additional strategies to reduce disparities such as addressing underlying biases in EHR family health information and selectively applying algorithm enhancements for disadvantaged populations. Systematic assessment of differences in algorithm performance across population subgroups should be incorporated into algorithm development processes.


Assuntos
Algoritmos , Síndromes Neoplásicas Hereditárias , Humanos , Feminino , Testes Genéticos , Registros Eletrônicos de Saúde , Processamento de Linguagem Natural
7.
Health Expect ; 27(4): e14143, 2024 08.
Artigo em Inglês | MEDLINE | ID: mdl-38992907

RESUMO

BACKGROUND: Individuals with high risk for lung cancer may benefit from lung cancer screening, but there are associated risks as well as benefits. Shared decision-making (SDM) tools with personalized information may provide key support for patients. Understanding patient perspectives on educational tools to facilitate SDM for lung cancer screening may support tool development. AIM: This study aimed to explore patient perspectives related to a SDM tool for lung cancer screening using a qualitative approach. METHODS: We elicited patient perspectives by showing a provider-facing SDM tool. Focus group interviews that ranged in duration from 1.5 to 2 h were conducted with 23 individuals with high risk for lung cancer. Data were interpreted inductively using thematic analysis to identify patients' thoughts on and desires for a patient-facing SDM tool. RESULTS: The findings highlight that patients would like to have educational information related to lung cancer screening. We identified several key themes to be considered in the future development of patient-facing tools: barriers to acceptance, preference against screening and seeking empowerment. One further theme illustrated effects of patient-provider relationship as a limitation to meeting lung cancer screening information needs. Participants also noted several suggestions for the design of technology decision aids. CONCLUSION: These findings suggest that patients desire additional information on lung cancer screening in advance of clinical visits. However, there are several issues that must be considered in the design and development of technology to meet the information needs of patients for lung cancer screening decisions. PATIENT OR PUBLIC CONTRIBUTION: Patients, service users, caregivers or members of the public were not involved in the study design, conduct, analysis or interpretation of the data. However, clinical experts in health communication provided detailed feedback on the study protocol, including the focus group approach. The study findings contribute to a better understanding of patient expectations for lung cancer screening decisions and may inform future development of tools for SDM.


Assuntos
Tomada de Decisão Compartilhada , Detecção Precoce de Câncer , Grupos Focais , Neoplasias Pulmonares , Participação do Paciente , Pesquisa Qualitativa , Humanos , Neoplasias Pulmonares/diagnóstico , Detecção Precoce de Câncer/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Idoso
8.
J Genet Couns ; 33(1): 15-27, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37950577

RESUMO

Standardized patients and/or role-playing are commonly used for practicing genetic counseling (GC) skills. Use of digital simulation, incorporating gamification elements, would require fewer resources to sustain than standardized patients. This manuscript reports steps taken and the lessons learned from creating a digital "Choose your own adventure" simulation in which students select preferred dialog for a genetic counselor who is seeing an adult patient to discuss genetic testing for the known pathogenic variant that caused familial adenomatous polyposis (FAP) in their father. The case has three endings, one of which is attained by selecting options that are mostly consistent with motivational interviewing counseling techniques. We conducted a preliminary evaluation of our beta version among nine GC students and one educator using a survey to assess acceptability and appropriateness as well as to elicit open-ended feedback. All participants agreed or strongly agreed with statements indicating the case was acceptable, appropriate, and fun. Users particularly appreciated the immediate feedback given throughout the case simulation. Many users wanted more options to select from and listed various other recommendations, including several which would require substantial resources to implement.


Assuntos
Conselheiros , Entrevista Motivacional , Adulto , Humanos , Aconselhamento Genético , Entrevista Motivacional/métodos , Aconselhamento/educação , Testes Genéticos
9.
J Genet Couns ; 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38962909

RESUMO

Cascade testing is an imperative process to engage Lynch syndrome patients' at-risk relatives in early cancer risk reduction interventions. How genetic counselors communicate about cascade testing is crucial to patients' intentions of and actual involvement in family communication. Based on data from 20 interviews with genetic counselors, this qualitative study examined their perceptions of barriers and facilitators of offering cascade testing to at-risk relatives and the specific communication strategies they use to discuss cascade testing with patients. We identified patient-level, genetic counselor-level, and system-level barriers and facilitators of having discussions with Lynch syndrome patients about cascade testing. The qualitative data also revealed four prominent communication strategies that genetic counselors use for such discussions: build rapport, reframe the benefits of family communication, adapt communication, and provide various resources. These findings highlight genetic counselors' needs of practical and structural support to facilitate their communication about cascade testing, especially when patients are hesitant or lack resources or skills to notify at-risk relatives about cascade testing.

10.
J Genet Couns ; 2024 Oct 27.
Artigo em Inglês | MEDLINE | ID: mdl-39462976

RESUMO

Some genetic counselors (GCs) may find theories, models, and frameworks (TMFs) useful in clinical skills selection and when reflecting on or evaluating genetic counseling practice. This paper aims to demonstrate how TMFs can be used to postulate how different skills may impact patients'/clients' decisions, behaviors, and outcomes and consider how multiple TMFs can inform the use of various skills or strategies to achieve different goals. Additionally, we provide examples of TMFs that may help GCs in nonclinical aspects of their work, such as implementing and evaluating new interventions or service delivery models. To guide the selection of appropriate TMFs, we provide a set of questions to consider and include examples of skills and approaches that align with different TMFs. While TMFs provide a structured approach and valuable guidance that may help advance genetic counseling practice, they have certain limitations. Additional research is necessary to determine the effectiveness of using TMFs to guide clinical practice and improve patient/client outcomes.

11.
J Surg Res ; 281: 155-163, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36155272

RESUMO

INTRODUCTION: Successful recovery after surgery is complex and highly individual. Rural patients encounter greater barriers to successful surgical recovery than urban patients due to varying healthcare and community factors. Although studies have previously examined the recovery process, rural patients' experiences with recovery have not been well-studied. The rural socioecological context can provide insights into potential barriers or facilitators to rural patient recovery after surgery. METHODS: We conducted semi-structured qualitative interviews with a purposeful sample of 30 adult general surgery patients from rural areas in the Mountain West region of the United States. We used the socioecological framework to analyze their responses. Interviews focused on rural participants' experiences accessing healthcare and the impact of family and community support during postoperative recovery. Interviews were transcribed verbatim and coded using content and thematic analysis. RESULTS: All participants commented on the quality of their rural healthcare systems and its influence on postoperative care. Some enjoyed the trust developed through long-standing relationships with providers in their communities. However, participants described community providers' lack of money, equipment, and/or knowledge as barriers to care. Following surgery, participants recognized that there are advantages and disadvantages to receiving family and community support. Some participants worried about being stigmatized or judged by their community. CONCLUSIONS: Future interventions aimed at improving access to and recovery from surgery for rural patients should take into account the unique perspectives of rural patients. Addressing the socioecological factors surrounding rural surgery patients, such as healthcare, family, and community resources, will be key to improving postoperative recovery.


Assuntos
Acessibilidade aos Serviços de Saúde , População Rural , Adulto , Humanos , Pesquisa Qualitativa
12.
J Genet Couns ; 2023 Jul 08.
Artigo em Inglês | MEDLINE | ID: mdl-37421231

RESUMO

Genetic testing (GT) has become ubiquitous in the United States, either in clinical or direct-to-consumer markets. White and English-speaking populations have primarily benefited from this new technology, leaving other groups, like Hispanic populations, behind. Explanations for this disparity has cited a lack of awareness and knowledge of genetic testing purposes. Science communication from English-language media play an important role in setting initial attitudes and influencing decision-making for audiences. However, Spanish-language media have virtually no research published on documented potential effects for GT utilization despite the continued growth of Hispanic Spanish-speaking groups in the United States. Thus, this study characterized coverage of GT from two of the most prominent US Spanish-language media outlets, Telemundo and Univision. Over a 12-year time period, we identified 235 written articles of GT, mainly focusing on forensics applications, followed by gossip and health. There were 292 sources referenced across all 235 articles drawing from governmental agencies or officials, other news agencies, and medical institutions or officials. The findings suggest that coverage of GT among Spanish-language news outlets is limited. When Spanish-language news outlets do cover GT, they focus on aspects of intrigue or entertainment more than demystifying and explaining GT. Stories tend to cite other published articles, with author attribution often missing, leading to questions of comfort of Spanish-media to cover these topics. Further, the publishing process may lead to confusion of the purpose of genetic testing for health purposes and may bias Spanish-speaking groups towards genetic testing for health purposes. Thus, reconciliation and education initiatives around genetic testing purposes are needed for Spanish-speaking communities from not only media, but also genetics providers and institutions.

13.
J Genet Couns ; 2023 Sep 25.
Artigo em Inglês | MEDLINE | ID: mdl-37746670

RESUMO

Contracting is a skill used by genetic counselors (GCs) to establish a shared vision for the session. Ensuring that patients and GCs are aligned on expectations for the encounter allows GCs to meet patient needs and support patient autonomy. Although contracting is described in the practice-based competencies (PBCs), the process has not been systematically observed in practice. We sought to further elucidate the skills used for contracting within genetic counseling sessions through directed content analysis of transcripts from 148 simulated prenatal and cancer genetic counseling sessions. An a priori codebook and rating scale were developed based on four contracting sample skills described in the PBCs: (a) describing the genetic counseling process, (b) eliciting client concerns, (c) applying client concerns to a session agenda, (d) modifying the agenda in response to emerging concerns. The rating scale described the quality of each skill on a 4-point scale of "absent," "minimal," "adequate," and "excellent." The codebook and rating scale were pilot tested with 40% of transcripts (n = 60). Three authors independently coded and rated the final 60% of transcripts (n = 88), resolving discrepancies via a consensus process. We found that the four PBC skills were present in most sessions (88%-98%), and on average, GCs received "adequate" scores on all four skills. We also identified three additional components of contracting not described in the PBCs: assessing whether client concerns were met, inviting to interrupt, and providing opportunity for partner concerns. This study represents the first attempt to evaluate GC performance of a PBC during a genetic counseling session. Our findings demonstrate that the PBC sample contracting skills reflect practice and suggest that they can be used in assessment of the genetic counseling contracting process. This type of analysis could be adapted in the future to provide support for other standards of practice in the genetic counseling field.

14.
J Genet Couns ; 32(4): 812-822, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36872475

RESUMO

Non-invasive prenatal screening (NIPS) using cell-free DNA is a screening test for fetal aneuploidy offered by a variety of prenatal healthcare providers. Guidelines for genetic screening consistently recommend that providers facilitate informed choices, which have been associated with better psychological and clinical outcomes than uninformed choices. The multidimensional measure of informed choice (MMIC) is a widely used and theory-based measure that combines knowledge, values, and behavior to classify decisions as either informed or uniformed. We implemented a previously validated version of the MMIC for women offered NIPS to describe the choices made by women receiving prenatal care at the Vanderbilt University Medical Center. The survey included the Ottawa Decisional Conflict scale, an outcome measure used for validation of choice categorization. We found that most women (87%) made an informed choice about NIPS. Of the women categorized as uninformed, 67% had insufficient knowledge, and 33% had an attitude discordant with their decision. The vast majority of respondents (92.5%) underwent NIPS and had a positive attitude toward screening (94.3%). Ethnicity (p = 0.04) and education (p = 0.01) were found to be significantly associated with informed choice. Decisional conflict was extremely low among all participants, with only 5.6% of all participants demonstrating any form of decisional conflict, and all being categorized as having made an informed choice. This study suggests that pre-test counseling by a genetic counselor results in high rates of informed choice and low-decisional conflict amongst women offered NIPS by genetic counselors, though more research is required to determine if rates of informed choice remain high when NIPS is offered by other prenatal providers.


Assuntos
Testes Genéticos , Cuidado Pré-Natal , Gravidez , Humanos , Feminino , Aneuploidia , Escolaridade , Diagnóstico Pré-Natal/psicologia
15.
J Genet Couns ; 32(3): 685-697, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36806333

RESUMO

We defined orienting language in genetic counseling sessions as 'language intended to direct focus to a particular aspect of the counseling process; a physical, emotional, or cognitive space; or an outcome'. This is a concept expanding on the idea of 'orientation' statements in the genetic counseling literature. We propose that orienting language is an important component of effective communication in the genetic counseling process. Our goals were to document the presence of orienting language in genetic counseling sessions with practicing genetic counselors and simulated clients, categorize types of orienting language, and evaluate the purpose of this language. A sample of Genetic Counseling Video Project videotape transcripts was evaluated through consensus coding for orienting language. Orienting language was found to be abundant in the dataset evaluated. Each excerpt was coded for orienting language Strategies and Purpose. The six categories of Strategy codes identified were Logical Consistency, Providing Context, Guidance, Structuring the Session, Anchoring, and Procedural. The six categories of Purpose codes were Counselee Understanding, Guidance, Engagement, Promoting Effective Counselor/Counselee Interactions, Counselee Adaptation, and Relationship Building. Results support our expanded definition of orienting language, which was similar in both cancer and prenatal specialties and across years of counselor experience. Orienting language acts as a series of signposts to help clients navigate the sometimes complex and unfamiliar territory of a genetic counseling session. The introduction of this term into the genetic counseling literature allows its use by genetic counselors to be further evaluated and potentially incorporated into genetic counselor training.


Assuntos
Conselheiros , Neoplasias , Feminino , Gravidez , Humanos , Aconselhamento Genético/psicologia , Aconselhamento , Idioma , Emoções , Neoplasias/genética
16.
Hered Cancer Clin Pract ; 21(1): 28, 2023 Dec 19.
Artigo em Inglês | MEDLINE | ID: mdl-38115072

RESUMO

BACKGROUND: Lynch Syndrome is among the most common hereditary cancer syndromes and requires ongoing cancer surveillance, repeated screenings and potential risk-reducing surgeries. Despite the importance of continued surveillance, there is limited understanding of patient experiences after initial testing and counseling, the barriers or facilitators they experience adhering to recommendations, and how they want to receive information over time. METHODS: A cross-sectional, observational study was conducted among 127 probands and family members who had received genetic testing for Lynch Syndrome. We conducted semi-structured interviews to determine proband and family member experiences after receiving genetic testing results including their surveillance and screening practices, information needs, and interactions with health care providers. Both closed-ended and open-ended data were collected and analyzed. RESULTS: Both probands (96.9%) and family members (76.8%) received recommendations for follow-up screening and all probands (100%) and most family members (98.2%) who tested positive had completed at least one screening. Facilitators to screening included receiving screening procedure reminders and the ease of making screening and surveillance appointments. Insurance coverage to pay for screenings was a frequent concern especially for those under 50 years of age. Participants commented that their primary care providers were often not knowledgeable about Lynch Syndrome and surveillance recommendations; this presented a hardship in navigating ongoing surveillance and updated information. Participants preferred information from a knowledgeable health care provider or a trusted internet source over social media or support groups. CONCLUSIONS: Probands and family members receiving genetic testing for Lynch Syndrome generally adhered to initial screening and surveillance recommendations. However, factors such as insurance coverage and difficulty finding a knowledgeable healthcare provider presented barriers to receiving recommended follow-up care. There is an opportunity to improve care through better transitions in care, procedures to keep primary care providers informed of surveillance guidelines, and practices so that patients receive reminders and facilitated appointment setting for ongoing screening and surveillance at the time they are due.

17.
Health Commun ; 38(11): 2441-2449, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-35582752

RESUMO

Research on previvors, individuals with a genetic predisposition to develop hereditary breast and ovarian cancer but who have not yet been diagnosed with breast or other cancers, examines online information gathering and community support to alleviate uncertainty. However, research exploring online content published by previvors themselves is limited. We examined content published to Instagram and TikTok to explore how breast cancer previvors discussed their lived experience which included, but was not limited to, genetic testing, diagnosis with a BRCA1/2 pathogenic (i.e. risk-increasing) variant, the decision to undergo preventative measures like surgery and/or reconstruction, and how they cope after diagnosis and surgical procedures. In the findings, we explicate how many previvors feel a responsibility to share their authentic experience on social media in order to help others and mitigate their own feelings of uncertainty. This study offers a snapshot of how women are sharing breast cancer previvorship and building social connections with each other online.


Assuntos
Neoplasias da Mama , Mídias Sociais , Feminino , Humanos , Proteína BRCA1/genética , Neoplasias da Mama/diagnóstico , Proteína BRCA2/genética , Testes Genéticos , Predisposição Genética para Doença
18.
Health Commun ; 38(14): 3252-3263, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36415031

RESUMO

This case study focuses on a video telehealth consult to discuss genetic testing results. Participants include a Genetic Counselor (GC) and a Patient (P) previously diagnosed with ovarian cancer who is currently undergoing chemotherapy treatments. Utilizing conversation analysis (CA), attention is first given to a series of interactional dilemmas as GC delivers and P responds to negative, uncertain, and complex test results. Specific findings address practices employed by GC to structure the encounter and establish authority, impacts on P's participation and understandings, recurring and at times problematic orientations to "negative" findings, and inherent ambiguities faced by GC and P when attempting to discern good and bad news. Close examination of these moments provides a unique opportunity to identify, describe, and explain genetic counseling as a co-produced, interactional achievement. These findings are then integrated with patient's post-counseling survey (susceptibility, anxiety, uncertainty, fear, and hope), including reported experiences which broaden understandings of the interactional environment. Specific recommendations are raised for improving counseling skills, enhancing patients' understandings, and building therapeutic alliances addressing both patients' emotional circumstances and the complexities of genetic test results.


Assuntos
Aconselhamento Genético , Telemedicina , Humanos , Incerteza , Aconselhamento , Comunicação
19.
J Cancer Educ ; 38(3): 1059-1065, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36306029

RESUMO

Skin cancer has become increasingly common among young adults; however, this population does not consistently adhere to recommended methods for preventing the disease. Interventions in college settings have relied on appearance-focused appeals and have not been able to examine the cumulative effect of multiple behavior change and skin cancer risk communication strategies. The goal of the current study was to examine the unique and combined impacts of personalized ultraviolet (UV) radiation photographs, genetic testing for skin cancer risk, and general skin cancer prevention education. Participants were randomly assigned to one of four conditions: (1) skin cancer prevention education, (2) education + UV photo, (3) education + genetic testing, and (4) education + UV photo + genetic testing. Self-reported sun protection, tanning, and sunburn were assessed at baseline, immediately post-intervention, and 1 month post-intervention. The findings indicated benefits of the interventions to skin cancer prevention behaviors in the overall sample; however, the combined (UV photo + genetic testing) intervention had the most consistent positive effects on behaviors. Intervention effects were distinct across seasons. These results suggest that interventions containing multiple skin cancer risk communication strategies hold promise in benefitting health-promoting behavior changes in an at-risk, young adult population.Trial Registration Number: NCT03979872; Registered 6/5/2019.


Assuntos
Neoplasias Cutâneas , Queimadura Solar , Humanos , Adulto Jovem , Queimadura Solar/prevenção & controle , Raios Ultravioleta/efeitos adversos , Educação em Saúde/métodos , Comportamentos Relacionados com a Saúde , Neoplasias Cutâneas/genética , Neoplasias Cutâneas/prevenção & controle , Fotografação , Protetores Solares/uso terapêutico
20.
Am J Hum Genet ; 104(2): 193-196, 2019 02 07.
Artigo em Inglês | MEDLINE | ID: mdl-30735659

RESUMO

Clinical genetics and genomics will exert their greatest population impact by leveraging the rich knowledge of human behavior that is central to the discipline of behavioral medicine. We contend that more concerted efforts are needed to integrate these fields synergistically, and accordingly, we consider barriers and potential actions to hasten such integration.


Assuntos
Pesquisa Comportamental/métodos , Pesquisa Comportamental/organização & administração , Aconselhamento Genético/psicologia , Genética Médica/métodos , Genética Médica/organização & administração , Genômica/métodos , Genômica/organização & administração , Adesão à Medicação/psicologia , Feminino , Humanos , Adesão à Medicação/estatística & dados numéricos , Medicina de Precisão/psicologia , Saúde Pública/métodos
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