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1.
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.

2.
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
3.
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.

4.
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
5.
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.

6.
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
7.
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.

8.
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.

9.
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
10.
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
11.
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
12.
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
13.
Health Expect ; 25(6): 2937-2949, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36225123

RESUMO

BACKGROUND: Diagnoses of both melanoma and nonmelanoma skin cancers are becoming increasingly common among young adults. Interventions in this population are a priority because they do not consistently follow skin cancer prevention recommendations. OBJECTIVES: The goal of the current study was to examine college students' perspectives on and experience with receiving a skin cancer prevention intervention that provided personalized skin cancer risk feedback in the form of an ultraviolet (UV) photograph, the results of genetic testing for common skin cancer risk variants, and/or general skin cancer prevention education. METHODS: Qualitative interviews were conducted with 38 college students who received a skin cancer prevention intervention. The interview covered students' feelings about their personal skin cancer risk information, the impact of the intervention on their skin cancer risk perceptions, actions or intentions to act with regard to their sun protection practices and feedback for improvement of the intervention content or delivery. RESULTS: Participants reported that different intervention components contributed to increased awareness of their sun protection behaviours, shifts in cognitions about and motivation to implement sun protection strategies and reported changes to their skin cancer prevention strategies. CONCLUSION: Our findings indicate that college students are interested in and responsive to these types of multicomponent skin cancer preventive interventions. Further, students demonstrate some motivation and intentionality toward changing their skin cancer risk behaviour in the short term. PATIENT OR PUBLIC CONTRIBUTION: Participants involved in this study were members of the public (undergraduate students) who were involved in a skin cancer prevention intervention, then participated in semistructured interviews, which provided the data analysed for this study.


Assuntos
Melanoma , Neoplasias Cutâneas , Adulto Jovem , Humanos , Universidades , Neoplasias Cutâneas/prevenção & controle , Melanoma/prevenção & controle , Estudantes , Motivação , Comportamentos Relacionados com a Saúde
14.
J Genet Couns ; 31(2): 470-478, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34570943

RESUMO

Women with a personal history of breast or ovarian cancer who previously had BRCA1/2 testing now have the opportunity for additional genetic risk information through multi-gene panel testing. However, little is known about women's receptivity to further contact and uptake of genetic counseling and updated genetic testing. Utilizing a clinic database to identify potential participants, we prospectively contacted women in the United States with a personal and/or family history of breast or ovarian cancer who had negative BRCA1/2 testing, which was performed primarily between 2011 and 2018. Eligible and interested participants were scheduled for a genetic counseling appointment to discuss updated genetic testing using a multi-gene panel. We attempted to contact 455 participants, screened 203 (45%), and 103 (23%) completed a pre-test genetic counseling visit to discuss updated testing. Of these, 88 participants had updated multi-gene panel testing. Participants had an average age of 59 years, and most (78%) had breast cancer with an average age of 45 at diagnosis. The majority (97%) of participants were white. Of participants who underwent panel testing, 13% (n = 11) had at least one pathogenic variant identified. Most participants (86%) had an out-of-pocket cost of $100 or less for their panel. There is a sizable population of women with a personal and/or family history of breast or ovarian cancer and negative BRCA1/2 test results who would qualify for updated multi-gene panel testing. In our study, 59% of those reached who were eligible completed a pre-test genetic counseling visit. Clinics could consider an outreach program to offer genetic counseling and updated genetic testing. Supports for this type of effort may include coordinators and genetic counseling assistants and an available database with patients' contact information and prior genetic test results. Updated testing allows women more information about their risk and may expand the value of genetic counseling.


Assuntos
Neoplasias da Mama , Neoplasias Ovarianas , Proteína BRCA1/genética , Proteína BRCA2/genética , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/genética , Feminino , Genes BRCA2 , Aconselhamento Genético , Predisposição Genética para Doença , Testes Genéticos/métodos , Humanos , Pessoa de Meia-Idade , Neoplasias Ovarianas/diagnóstico , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/psicologia
15.
J Genet Couns ; 31(5): 1020-1031, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35906848

RESUMO

Genetic counselors (GCs) have traditionally been trained to adopt a position of equipoise or clinical neutrality. They provide information, answer questions, address barriers, and engage in shared decision-making, but generally, they do not prescribe a genetic test. Historically, GCs have generally been trained not to persuade the ambivalent or resistant patient. More recently, however, there has been discussion regarding when a greater degree of persuasion or directionality may be appropriate within genetic counseling (GC) and what role MI may play in this process. The role for "persuasive GC" is based on the premise that some genetic tests provide actionable information that would clearly benefit patients and families by impacting treatment or surveillance. For other tests, the benefits are less clear as they do not directly impact patient care or the benefits may be more subjective in nature, driven by patient values or psychological needs. For the former, we propose that GCs may adopt a more persuasive clinical approach while for the latter, a more traditional equipoise stance may be more appropriate. We suggest that motivational interviewing (MI) could serve as a unifying counseling model that allows GCs to handle both persuasive and equipoise encounters. For clearly beneficial tests, while directional, the MI encounter can still be non-directive, autonomy-supportive, and patient-centered. MI can also be adapted for equipoise situations, for example, placing less emphasis on eliciting and strengthening change talk as that is more a behavior change strategy than a shared decision-making strategy. The core principles and strategies of MI, such as autonomy support, evocation, open questions, reflective listening, and affirmation would apply to both persuasive and equipoise encounters. Key issues that merit discussion include how best to train GCs both during their initial and post-graduate education.


Assuntos
Entrevista Motivacional , Comunicação , Aconselhamento/educação , Aconselhamento Genético , Humanos , Comunicação Persuasiva
16.
Ann Behav Med ; 55(11): 1048-1061, 2021 10 27.
Artigo em Inglês | MEDLINE | ID: mdl-34297059

RESUMO

BACKGROUND: Precision medicine research depends upon recruiting large and diverse participant cohorts to provide genetic, environmental, and lifestyle data. How prospective participants react to information about this research, including depictions of uncertainty, is not well understood. PURPOSE: The current study examined public responses to precision medicine research, focusing on reactions toward (a) uncertainty about the scientific impact of sharing data for research, and (b) uncertainty about the privacy, security, or intended uses of participant data. METHODS: U.S. adults (N = 674; 51.9% male; 50% non-Hispanic white; Mage = 42.23) participated in an online experimental survey. Participants read a manipulated news article about precision medicine research that conveyed either certainty or uncertainty of each type (scientific, data). Participants then rated their attitudes toward the research, trust in the researchers, and willingness to join a cohort. We tested direct and mediated paths between message condition and outcomes and examined individual characteristics as moderators. RESULTS: Overall attitudes were positive and a majority of participants (65%) reported being somewhat or very likely to participate in precision medicine research if invited. Conveying uncertainty of either type had no overall main effect on outcomes. Instead, those who reported perceiving greater uncertainty had lower attitudes, trust, and willingness to join, while those with more tolerance for uncertainty, support for science, and scientific understanding responded favorably to the scientific uncertainty disclosure. CONCLUSIONS: Findings suggest responses to precision medicine research uncertainty are nuanced and that successful cohort enrollment may be well-supported by a transparent approach to communicating with prospective participants.


Assuntos
Medicina de Precisão , Confiança , Adulto , Revelação , Feminino , Humanos , Masculino , Estudos Prospectivos , Incerteza
17.
BMC Health Serv Res ; 21(1): 542, 2021 Jun 02.
Artigo em Inglês | MEDLINE | ID: mdl-34078380

RESUMO

BACKGROUND: Advances in genetics and sequencing technologies are enabling the identification of more individuals with inherited cancer susceptibility who could benefit from tailored screening and prevention recommendations. While cancer family history information is used in primary care settings to identify unaffected patients who could benefit from a cancer genetics evaluation, this information is underutilized. System-level population health management strategies are needed to assist health care systems in identifying patients who may benefit from genetic services. In addition, because of the limited number of trained genetics specialists and increasing patient volume, the development of innovative and sustainable approaches to delivering cancer genetic services is essential. METHODS: We are conducting a randomized controlled trial, entitled Broadening the Reach, Impact, and Delivery of Genetic Services (BRIDGE), to address these needs. The trial is comparing uptake of genetic counseling, uptake of genetic testing, and patient adherence to management recommendations for automated, patient-directed versus enhanced standard of care cancer genetics services delivery models. An algorithm-based system that utilizes structured cancer family history data available in the electronic health record (EHR) is used to identify unaffected patients who receive primary care at the study sites and meet current guidelines for cancer genetic testing. We are enrolling eligible patients at two healthcare systems (University of Utah Health and New York University Langone Health) through outreach to a randomly selected sample of 2780 eligible patients in the two sites, with 1:1 randomization to the genetic services delivery arms within sites. Study outcomes are assessed through genetics clinic records, EHR, and two follow-up questionnaires at 4 weeks and 12 months after last genetic counseling contactpre-test genetic counseling. DISCUSSION: BRIDGE is being conducted in two healthcare systems with different clinical structures and patient populations. Innovative aspects of the trial include a randomized comparison of a chatbot-based genetic services delivery model to standard of care, as well as identification of at-risk individuals through a sustainable EHR-based system. The findings from the BRIDGE trial will advance the state of the science in identification of unaffected patients with inherited cancer susceptibility and delivery of genetic services to those patients. TRIAL REGISTRATION: BRIDGE is registered as NCT03985852 . The trial was registered on June 6, 2019 at clinicaltrials.gov .


Assuntos
Aconselhamento Genético , Neoplasias , Criança , Feminino , Testes Genéticos , Humanos , Recém-Nascido , Neoplasias/genética , Neoplasias/terapia , New York , Gravidez , Atenção Primária à Saúde
18.
J Genet Couns ; 30(3): 911-918, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33142015

RESUMO

Cancer-related genetic testing (hereafter CGT) has transformed cancer prevention, treatment, and care. Researchers debate whether diffusion and use of genetic testing will reduce or widen cancer health disparities through effects on improving or worsening cancer-related mortality, morbidity, and outcomes that disproportionately affect racial and ethnic minority populations. Cancer disparities by race and ethnicity have been associated with social determinants of health and healthcare access and experience. However, little research has explored how communication about CGT may contribute to these disparities. As such, the goal of this study was to characterize the literature published between 2010 and 2017 on communication about CGT among Latinx populations through a secondary analysis of papers identified in a larger scoping review. We found thirteen (2.5%) of 513 papers in the parent scoping review had over 50% Latinx representation; only nine of these (69%) had fully Latinx comprised study cohorts. The majority of the 13 identified studies (n = 9) were conducted to assess knowledge and attitudes regarding CGT. Most studies included services or materials in both Spanish and English. Few studies assessed language preference or acculturation or compared outcomes across sub-ethnicities. We identified opportunities for researchers to explore differences in outcomes by language preference and acculturation, and between sub-ethnicities in future studies. Leveraging a greater understanding of the heterogeneity within the Latinx population will allow genetics researchers and providers to improve utilization of CGT and therein health outcomes to advance health equity.


Assuntos
Etnicidade , Neoplasias , Comunicação , Testes Genéticos , Humanos , Grupos Minoritários , Neoplasias/genética
19.
J Health Commun ; 26(8): 576-585, 2021 08 03.
Artigo em Inglês | MEDLINE | ID: mdl-34612176

RESUMO

Family communication about skin cancer risk may motivate protective behaviors. However, it is unclear how widespread such communication might be. In this study, we describe prevalence and patterns (across environmental, personal, and behavioral factors) of family communication about skin cancer across N = 600 diverse (79% female, 48% Hispanic, 44% non-Hispanic White) primary care patients from Albuquerque, New Mexico, a geographical location with year-round sun exposure. Over half reported discussing general cancer (77%) and skin cancer risks (66%) with their families. The most frequent target of skin cancer risk communication included doctors (54%), followed by friends/coworkers (49%), spouse/partner (43%), other family members (38%), sisters (36%), mothers (36%), daughters (33%), sons (32%), father (24%), and brothers (22%). On average, participants reported having talked to three family members about skin cancer risks. The most frequently discussed content of skin cancer risk communication was the use of sun protection (89%), followed by the personal risk of skin cancer (68%), who had skin cancer in the family (60%), family risk of skin cancer (59%), time of sun exposure (57%), and skin cancer screening (57%). A family or personal history of cancer, higher perceived risk, higher health literacy, being non-Hispanic, having higher education or income, and proactive sun protective behavior were associated with greater family communication about general cancer and skin cancer risks. These study findings have implications for interventions that encourage discussions about skin cancer risk, sun protection, and skin cancer screening that lead to adoption of sun-safe behaviors.


Assuntos
Neoplasias Cutâneas , Protetores Solares , Comunicação , Feminino , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Hispânico ou Latino , Humanos , Masculino , Neoplasias Cutâneas/prevenção & controle
20.
J Med Internet Res ; 23(11): e29447, 2021 11 18.
Artigo em Inglês | MEDLINE | ID: mdl-34792472

RESUMO

BACKGROUND: Cancer genetic testing to assess an individual's cancer risk and to enable genomics-informed cancer treatment has grown exponentially in the past decade. Because of this continued growth and a shortage of health care workers, there is a need for automated strategies that provide high-quality genetics services to patients to reduce the clinical demand for genetics providers. Conversational agents have shown promise in managing mental health, pain, and other chronic conditions and are increasingly being used in cancer genetic services. However, research on how patients interact with these agents to satisfy their information needs is limited. OBJECTIVE: Our primary aim is to assess user interactions with a conversational agent for pretest genetics education. METHODS: We conducted a feasibility study of user interactions with a conversational agent who delivers pretest genetics education to primary care patients without cancer who are eligible for cancer genetic evaluation. The conversational agent provided scripted content similar to that delivered in a pretest genetic counseling visit for cancer genetic testing. Outside of a core set of information delivered to all patients, users were able to navigate within the chat to request additional content in their areas of interest. An artificial intelligence-based preprogrammed library was also established to allow users to ask open-ended questions to the conversational agent. Transcripts of the interactions were recorded. Here, we describe the information selected, time spent to complete the chat, and use of the open-ended question feature. Descriptive statistics were used for quantitative measures, and thematic analyses were used for qualitative responses. RESULTS: We invited 103 patients to participate, of which 88.3% (91/103) were offered access to the conversational agent, 39% (36/91) started the chat, and 32% (30/91) completed the chat. Most users who completed the chat indicated that they wanted to continue with genetic testing (21/30, 70%), few were unsure (9/30, 30%), and no patient declined to move forward with testing. Those who decided to test spent an average of 10 (SD 2.57) minutes on the chat, selected an average of 1.87 (SD 1.2) additional pieces of information, and generally did not ask open-ended questions. Those who were unsure spent 4 more minutes on average (mean 14.1, SD 7.41; P=.03) on the chat, selected an average of 3.67 (SD 2.9) additional pieces of information, and asked at least one open-ended question. CONCLUSIONS: The pretest chat provided enough information for most patients to decide on cancer genetic testing, as indicated by the small number of open-ended questions. A subset of participants were still unsure about receiving genetic testing and may require additional education or interpersonal support before making a testing decision. Conversational agents have the potential to become a scalable alternative for pretest genetics education, reducing the clinical demand on genetics providers.


Assuntos
Inteligência Artificial , Comunicação , Doença Crônica , Aconselhamento Genético , Humanos , Saúde Mental
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