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1.
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.

2.
J Genet Couns ; 2024 Aug 07.
Artigo em Inglês | MEDLINE | ID: mdl-39112416

RESUMO

Men with germline pathogenic variants in BRCA1 or BRCA2 genes are at an increased lifetime risk for developing breast cancer, prostate cancer, and pancreatic cancer. Men report that managing clinical care is challenging because they are under-informed about their cancer risks. As the demand for genetic testing has increased, so too has the need to relay accurate and relatable genetic health information. This research developed and assessed the acceptability and appropriateness of a psychoeducational graphic novel designed for men to improve their cancer risk knowledge, manage their cancer-related uncertainty, and increase their intent to disclose their BRCA1/2 risks to family members and healthcare providers. Through purposive and snowball sampling, men (n = 20) and certified genetic counselors (CGCs; n = 15) participated in semi-structured interviews assessing the acceptability and appropriateness of the graphic novel. Interviews were audio-recorded, transcribed, and thematically analyzed. Both reported that the graphic novel confirmed risk information provided helpful resources, included relatable storylines, and had a unique visual appeal. Some men remained unsure about how to perform recommended screenings and how to talk to family members, particularly children, about BRCA1/2 test results after assessing the graphic novel. CGCs also discussed the helpfulness of the graphic novel for their practice. Given that this psychoeducational graphic novel was appealing to men and CGCs, it shows promise as an acceptable approach that may assist men in managing their cancer risks and communicating their genetic risk information to family members and healthcare providers.

3.
Health Commun ; 36(5): 606-615, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-32122169

RESUMO

Receiving a variant of uncertain significance (VUS) result is quite common for individuals who undergo genetic testing. Because VUS results are often unexpected and necessarily complex, they are challenging for genetic counselors to deliver. The current research sought to examine how three specific message features (risk estimate formats, establishment of a future plan, and linguistic agency), and message receivers' intolerance of uncertainty, influenced the effectiveness of genetic counselors' communication of a VUS result. A series of MANCOVAs and multiple regressions suggested that these message features affected message receivers' perception of a genetic counselor's credibility and receivers' uncertainty appraisal and information-seeking intentions. Specifically, establishing a future plan and assigning agency to a VUS result enhanced perceived counselor credibility. When results were presented in a numeric format, assigning agency to counselors resulted in heightened danger appraisal and greater information-seeking intentions. Individuals' intolerance of uncertainty moderated the association between risk formats and uncertainty appraisal. These results have both theoretical and practical implications for communication of uncertainty in the context of genetic counseling.


Assuntos
Neoplasias da Mama , Conselheiros , Neoplasias da Mama/genética , Comunicação , Feminino , Aconselhamento Genético , Testes Genéticos , Humanos
4.
Health Commun ; 35(13): 1583-1592, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-31423843

RESUMO

Ample research suggests that uncertainty is a major concern for individuals undergoing genetic testing and for genetic mutation carriers, and that their management of uncertainty is largely influenced by healthcare providers, including genetic counselors (GCs). Indeed, uncertainty is inherent in genetic testing results. To help patients grapple with uncertainty, GCs need to effectively manage the uncertainty inherent in genetic testing and communicate it appropriately to patients. The present study aimed to identify GCs' strategies for managing uncertainty and communicating uncertainty to patients. Eighteen GCs participated in five focus group interviews, and the data were analyzed using a grounded theory approach. Findings indicated that GCs used three main strategies to manage uncertainty: becoming lifelong learners, normalizing uncertainty, and seeking social support. To communicate uncertainty to patients, GCs also used three different strategies: engaging in open and honest communication, adapting to patients' needs, and focusing on known information. The implications of these findings for uncertainty theories and for conceptual frameworks of GCs' clinical communication are discussed.


Assuntos
Conselheiros , Comunicação , Aconselhamento Genético , Testes Genéticos , Humanos , Incerteza
5.
Patient Educ Couns ; 130: 108439, 2024 Sep 15.
Artigo em Inglês | MEDLINE | ID: mdl-39303503

RESUMO

OBJECTIVE: Examine decision-making regarding when women would prefer to receive reproductive carrier and cancer predisposition screening and from what clinician. METHODS: 20 women completed in-depth interviews via Zoom exploring their views on the provision of reproductive carrier and cancer predisposition screening. Our analysis identified themes related to what informs women's preferences for when they would like to receive a genetic screening offer and by which clinician. RESULTS: Participants' responses to questions about when they would be interested in receiving genetic screening were best understood through the lens of the Extended Parallel Process Model. Specifically, personal utility of the information, a woman's family health history and cost were key factors in decision-making. Women considered their clinician's knowledge and their trust in and relationship with the clinician when deciding from whom they would prefer to receive an offer of genetic screening. CONCLUSION: OB/GYN clinic patients may accept an offer of genetic screening from a knowledgeable and trusted clinician for carrier and cancer predisposition screening preconceptionally or prenatally. PRACTICE IMPLICATIONS: Integrating genetic reproductive and cancer predisposition screening into the care provided to reproductive age OB/GYN patients may be acceptable to this population.

6.
Womens Health Rep (New Rochelle) ; 5(1): 624-631, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39391787

RESUMO

Introduction: Lifestyle change programs (LCPs) are effective in helping people adopt healthy lifestyles and maintain healthy weight for disease prevention. LCPs are known to be underutilized, but the nuances surrounding women's interest in using these programs for disease prevention need to be further explored so that enrollment and retention in these programs can be improved. Methods: The purpose of this study was to explore women's interest in and knowledge of LCPs and identify their motivators and barriers to joining these types of programs through a survey. The survey was administered both online and in person. The survey had 22 questions and included demographics, medical and family history, knowledge and interest in LCPs, and barriers and motivators to participating in LCPs. Results: Participants in this study included 1,606 women from 40 to 74 years of age. We found that respondents had limited knowledge about the benefits of LCPs in reducing risks of specific diseases, such as breast cancer and osteoarthritis. Respondents reported low-to-moderate interest in LCPs. We found that their interest in these programs was negatively associated with their weekly physical activity and positively associated with their body mass index (BMI) and the number of reported barriers to joining LCPs. The most common barriers cited were cost, location, time, and too many meetings. In addition, we found that respondents who had or were unsure about their family history of diabetes were more interested in LCPs compared with individuals who had no family history of diabetes. We did not find significant differences in respondent interest in LCPs across ethnicity. Conclusions: Our study suggests that specific barriers to LCPs-including women's knowledge of such programs-will need to be addressed before enrollment and retention in LCPs are increased.

7.
JAMA Netw Open ; 7(9): e2432143, 2024 Sep 03.
Artigo em Inglês | MEDLINE | ID: mdl-39250153

RESUMO

Importance: Increasing numbers of unaffected individuals could benefit from genetic evaluation for inherited cancer susceptibility. Automated conversational agents (ie, chatbots) are being developed for cancer genetics contexts; however, randomized comparisons with standard of care (SOC) are needed. Objective: To examine whether chatbot and SOC approaches are equivalent in completion of pretest cancer genetic services and genetic testing. Design, Setting, and Participants: This equivalence trial (Broadening the Reach, Impact, and Delivery of Genetic Services [BRIDGE] randomized clinical trial) was conducted between August 15, 2020, and August 31, 2023, at 2 US health care systems (University of Utah Health and NYU Langone Health). Participants were aged 25 to 60 years, had had a primary care visit in the previous 3 years, were eligible for cancer genetic evaluation, were English or Spanish speaking, had no prior cancer diagnosis other than nonmelanoma skin cancer, had no prior cancer genetic counseling or testing, and had an electronic patient portal account. Intervention: Participants were randomized 1:1 at the patient level to the study groups at each site. In the chatbot intervention group, patients were invited in a patient portal outreach message to complete a pretest genetics education chat. In the enhanced SOC control group, patients were invited to complete an SOC pretest appointment with a certified genetic counselor. Main Outcomes and Measures: Primary outcomes were completion of pretest cancer genetic services (ie, pretest genetics education chat or pretest genetic counseling appointment) and completion of genetic testing. Equivalence hypothesis testing was used to compare the study groups. Results: This study included 3073 patients (1554 in the chatbot group and 1519 in the enhanced SOC control group). Their mean (SD) age at outreach was 43.8 (9.9) years, and most (2233 of 3063 [72.9%]) were women. A total of 204 patients (7.3%) were Black, 317 (11.4%) were Latinx, and 2094 (75.0%) were White. The estimated percentage point difference for completion of pretest cancer genetic services between groups was 2.0 (95% CI, -1.1 to 5.0). The estimated percentage point difference for completion of genetic testing was -1.3 (95% CI, -3.7 to 1.1). Analyses suggested equivalence in the primary outcomes. Conclusions and Relevance: The findings of the BRIDGE equivalence trial support the use of chatbot approaches to offer cancer genetic services. Chatbot tools can be a key component of sustainable and scalable population health management strategies to enhance access to cancer genetic services. Trial Registration: ClinicalTrials.gov Identifier: NCT03985852.


Assuntos
Neoplasias , Padrão de Cuidado , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Adulto , Neoplasias/genética , Neoplasias/terapia , Serviços em Genética/estatística & dados numéricos , Aconselhamento Genético/métodos , Testes Genéticos/métodos , Testes Genéticos/estatística & dados numéricos , Predisposição Genética para Doença
8.
Vaccines (Basel) ; 11(2)2023 Jan 31.
Artigo em Inglês | MEDLINE | ID: mdl-36851201

RESUMO

As China launches its second COVID-19 booster campaign and races to bring new vaccine technologies to protect against severe COVID-19 infections, there is limited research on how Chinese residents search for vaccine-related information. This study examined the factors influencing Chinese residents' information-seeking behaviors regarding COVID-19 boosters with a sample of 616 respondents with a mean age of 31.53 from a research panel. Structural equation modeling was used to report factors that influenced respondents' seeking intent. The results indicated that seeking-related subjective norms (ß = -0.55, p < 0.001), negative affect (ß = 0.08, p < 0.05), positive affect (ß = 0.18, p < 0.001), and perceived knowledge insufficiency (ß = 0.10, p < 0.001) are strong predictors of one's seeking intent. We also discovered that there was an inverse relationship between risk perception and positive affect (ß = -0.55, p < 0.001) and between negative and positive affect (ß = -0.19, p < 0.01), while all measurements were either directly or indirectly related to information-seeking intent. A few more indirect but important relationships were also included in our discussion. In conclusion, the present study helps understand what motivates Chinese residents to seek COVID-19 booster information when limited information is available.

9.
Patient Educ Couns ; 110: 107653, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36807127

RESUMO

OBJECTIVE: To determine the mismatch of desired support versus support received and to evaluate the impact of these mismatches on health outcomes of people with diabetes. METHODS: This cross-sectional study is a secondary data analysis of medical record and survey data of participants with Type 1 and Type 2 diabetes from a diabetes care and education program. Biophysical metrics included HbA1c, body mass index, systolic blood pressure, diastolic blood pressure, triglycerides, and high- and low-density lipoproteins. Psychosocial and self-care survey outcomes included diabetes distress, diabetes self-care, and diabetes self-efficacy. Support mismatch was a difference score (support desired-support received). Descriptive statistics were computed for demographics, clinical characteristics, and primary outcomes. Multiple linear regressions were computed. RESULTS: The percentage of participants experiencing support mismatch (surplus/deficits) across six domains was: 15%/27% (foot care), 22%/24% (take medicine), 24%/23% (test blood sugar), 21%/29% (physical activity), and 18%/34% (follow meal plan). Greater support deficits were associated with higher triglyceride levels, increased diabetes distress, and lower diabetes self-efficacy. CONCLUSIONS: Findings indicate that greater support deficits can be a risk factor for some poorer physical and psychosocial health outcomes. PRACTICE IMPLICATIONS: Interventions to facilitate functional supportive behaviors are an avenue for future research and clinical practice.


Assuntos
Diabetes Mellitus Tipo 2 , Humanos , Diabetes Mellitus Tipo 2/psicologia , Amigos , Estudos Transversais , Fatores de Risco , Glicemia
10.
Patient Educ Couns ; 114: 107792, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37201301

RESUMO

OBJECTIVES: To assess demographic, structural, and psychological predictors of risk-increasing and risk-decreasing behaviors METHODS: This study used data from an online longitudinal, three-wave COVID-19 survey (12/20-03/21) regarding the behaviors, attitudes, and experiences of US Veteran (n = 584) and non-Veteran (n = 346) adults. RESULTS: Inability to get groceries delivered emerged as the strongest predictor of more frequent risk-increasing behavior across all timepoints. Other consistent predictors of more frequent risk-increasing behavior and less frequent mask wearing included less worry about getting COVID-19, disbelief in science, belief in COVID-19 conspiracies, and negative perceptions of the state response. No demographic factor consistently predicted risk-increasing behavior or mask wearing, though different demographic predictors emerged for more frequent risk-increasing behaviors (e.g., lower health literacy) and mask-wearing (e.g., older age and urban residence) at certain timepoints. The most frequently endorsed reasons for having contact with others concerned health-related (food, medical care, and exercise) and social needs (seeing friends/family and boredom). CONCLUSIONS: These findings highlight key individual-level determinants of risk-increasing behaviors and mask wearing which encompass demographic, structural, and psychological factors. PRACTICE IMPLICATIONS: Findings can support public health experts and health communicators promote engagement with risk-reducing behaviors and address key barriers to engaging in these behaviors.


Assuntos
COVID-19 , Letramento em Saúde , Adulto , Humanos , COVID-19/epidemiologia , COVID-19/prevenção & controle , Assunção de Riscos , Exercício Físico , Amigos
11.
PEC Innov ; 2: 100128, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37214524

RESUMO

Objective: To examine cognitive, relational, and social predictors of interest in and timing preference for cancer predisposition testing (CPT) and expanded carrier screening (ECS) offered in routine gynecologic care for women of reproductive age. Methods: Women between 20 and 35 years old who were currently pregnant or had a prior pregnancy (N = 351) completed an online survey. Bivariate and multivariable analyses were used to identify significant predictors of women's interest in and timing preference for CPT and ECS. Results: Most respondents reported high interest in CPT and ECS and preferred to have them when planning for a pregnancy. Perceived importance of genetic information and negative attitude towards uncertainty predicted interest in CPT and ECS in multivariable models. Genetic knowledge predicted preference for CPT or ECS when planning for a pregnancy. Conclusion: Educational and decision support tools should be developed to enhance women's knowledge and awareness of CPT and ECS and to provide them with strategies to manage uncertainty. Innovation: We examined women's timing preference for CPT and ECS and the impact of partner support and trust with gynecologist. A context-specific attitudes toward uncertainty scale was used to investigate women's particular perceptions of uncertainty in genetic testing.

12.
MDM Policy Pract ; 8(1): 23814683231178033, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38178866

RESUMO

Introduction: Decision aids (DAs) are helpful instruments used to support shared decision making (SDM). Patients with atrial fibrillation (AF) face complex decisions regarding stroke prevention strategies. While a few DAs have been made for AF stroke prevention, an encounter DA (EDA) and patient DA (PDA) have not been created to be used in conjunction with each other before. Design: Using iterative user-centered design, we developed 2 DAs for anticoagulation choice and stroke prevention in AF. Prototypes were created, and we elicited feedback from patients and experts via observations of encounters, usability testing, and semistructured interviews. Results: User testing was done with 33 experts (in AF and SDM) and 51 patients from 6 institutions. The EDA and PDA underwent 1 and 4 major iterations, respectively. Major differences between the DAs included AF pathophysiology and a preparation to meet with the clinician in the PDA as well as different language throughout. Content areas included personalized stroke risk, differences between anticoagulants, and risks of bleeding. Based on user feedback, developers 1) addressed feelings of isolation with AF, 2) improved navigation options, 3) modified content and flow for users new to AF and those experienced with AF, 4) updated stroke risk pictographs, and 5) added structure to the preparation for decision making in the PDA. Limitations: These DAs focus only on anticoagulation for stroke prevention and are online, which may limit participation for those less comfortable with technology. Conclusions: Designing complementary DAs for use in tandem or separately is a new method to support SDM between patients and clinicians. Extensive user testing is essential to creating high-quality tools that best meet the needs of those using them. Highlights: First-time complementary encounter and patient decision aids have been designed to work together or separately.User feedback led to greater structure and different experiences for patients naïve or experienced with anticoagulants in patient decision aids.Online tools allow for easier dissemination, use in telehealth visits, and updating as new evidence comes out.

13.
J Fluency Disord ; 65: 105778, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32736162

RESUMO

People who stutter (PWS) suffer from stereotypes portraying them as timid and anxious, which may affect their relationships and careers. One of the mechanisms for this stereotyping is the anchoring and adjustment heuristic, whereby individuals make judgements about PWS by using previous experiences for the initial judgement and then adjust accordingly. In the current study (n = 309) we replicate previous findings that individuals stereotype PWS by anchoring to experiences with episodic stuttering and adjusting toward typical non-stuttering individuals, although insufficiently. We extend this finding by testing whether trait perspective-taking and need for cognition moderate this relationship. The results show that trait perspective-taking decreases stereotyping of non-PWS, while having no effect on PWS stereotyping. However, need for cognition exhibited no consistent moderating effect on stereotyping.


Assuntos
Ansiedade/psicologia , Cognição/fisiologia , Estereotipagem , Gagueira/psicologia , Adolescente , Adulto , Idoso , Ansiedade/patologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Gagueira/patologia
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