Cancer genetic counseling: communication and counselees' post-visit satisfaction, cognitions, anxiety, and needs fulfillment.
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ABSTRACT:
SUBMITTER: Pieterse AH
PROVIDER: S-EPMC1915655 | biostudies-other | 2007 Feb
REPOSITORIES: biostudies-other
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Project description:As genetics and genomics become part of mainstream medicine, these advances have the potential to either reduce or exacerbate health disparities. Relatively, little research has explored the quality of genetic counseling communication experienced by limited English proficiency patients, especially Chinese Americans. We observed and audio recorded genetic counseling appointments (n =?40) of low-income, limited English-proficient Chinese patients (n =?25) and conducted post-visit interviews (n =?17) using stimulated recall to examine patient understanding of the communication. Standard techniques based in grounded theory, including iterative data review and multiple coders, were used to analyze observation fieldnotes and interview transcripts and to identify these themes: (1) strong beliefs in environmental causes of cancer and skepticism about genetic causes, (2) willingness to undergo genetic testing despite skepticism of hereditary cause of cancer, (3) misunderstanding of key information needed to make informed decisions about testing and screening/prevention options, (4) variable quality of medical interpretation, and (5) selective family communication about cancer and genetic counseling and testing. Together, these themes describe substantial gaps in communication and identify the need for genetic counseling techniques and skills that enable counselors to communicate more effectively across language, literacy, and culture. Understanding the mechanisms of inheritance and the implications of genetic test results can be challenging for anyone, and it is exceptionally daunting for those who have limited English proficiency and/or low literacy. For Chinese immigrant patients to reap the full benefits of genetic counseling and testing, effective communication is essential. Research on interventions to improve communication is needed to ensure that disparities do not widen as genomic medicine reaches a more diverse population.
| S-EPMC6002298 | biostudies-literature
Project description:BackgroundWhile genetic counseling has expanded globally, Mexico has not adopted it as a separate profession. Given the rapid expansion of genetic and genomic services, understanding the current genetic counseling landscape in Mexico is crucial to improving healthcare outcomes.MethodsOur needs assessment strategy has two components. First, we gathered quantitative data about genetics education and medical geneticists' geographic distribution through an exhaustive compilation of available information across several medical schools and public databases. Second, we conducted semi-structured interviews of 19 key-informants from 10 Mexican states remotely with digital recording and transcription.ResultsAcross 32 states, ~54% of enrolled medical students receive no medical genetics training, and only Mexico City averages at least one medical geneticist per 100,000 people. Barriers to genetic counseling services include: geographic distribution of medical geneticists, lack of access to diagnostic tools, patient health literacy and cultural beliefs, and education in medical genetics/genetic counseling. Participants reported generally positive attitudes towards a genetic counseling profession; concerns regarding a current shortage of available jobs for medical geneticists persisted.ConclusionTo create a foundation that can support a genetic counseling profession in Mexico, the clinical significance of medical genetics must be promoted nationwide. Potential approaches include: requiring medical genetics coursework, developing community genetics services, and increasing jobs for medical geneticists.
| S-EPMC6503023 | biostudies-literature
Project description:The purpose of this pilot study was to describe communication practices during hereditary breast cancer genetic counseling (GC) with low-income immigrant Latina patients in a public hospital setting. We utilized qualitative ethnographic methods, including direct observation of GC appointments with Latina patients at a public hospital offering free GC and BRCA testing and in-depth qualitative interviews with patients after they had received their BRCA genetic test results. Twenty-five patients participated; 20 were observed during genetic counseling appointments, and ten participated in interviews after BRCA testing with six participating in both observations and an interview. Analyses of qualitative data from observation field notes and interviews identified both strengths and limitations of current communication practices within the following themes: (1) family health history communication, (2) education regarding genes and genetics and patient information needs, (3) the purpose of the genetic test, (4) genetic test results and cancer risk, (5) building rapport and providing support, and (6) medical interpretation for monolingual Spanish speakers. As access to cancer GC expands in the public safety net settings and for the diverse populations they serve, it is critical to ensure effective communication in order for patients, whether or not they have a BRCA mutation, to understand the nature of their cancer risk and recommended methods of screening and prevention. Intervention strategies that address both structural constraints and patient-provider communication are needed to improve GC communication with immigrant Latinas, especially monolingual Spanish speakers.
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Project description:We investigated whether disclosure of coronary heart disease (CHD) genetic risk influences perceived personal control (PPC) and genetic counseling satisfaction (GCS). Participants (n = 207, age: 45-65 years) were randomized to receive estimated 10-year risk of CHD based on a conventional risk score (CRS) with or without a genetic risk score (GRS). Risk estimates were disclosed by a genetic counselor who also reviewed how GRS altered risk in those randomized to CRS+GRS. Each participant subsequently met with a physician and then completed surveys to assess PPC and GCS. Participants who received CRS+GRS had higher PPC than those who received CRS alone although the absolute difference was small (25.2 ± 2.7 vs 24.1 ± 3.8, p = 0.04). A greater proportion of CRS+GRS participants had higher GCS scores (17.3 ± 5.3 vs 15.9 ± 6.3, p = 0.06). In the CRS+GRS group, PPC and GCS scores were not correlated with GRS. Within both groups, PPC and GCS scores were similar in patients with or without family history (p = NS). In conclusion, patients who received their genetic risk of CHD had higher PPC and tended to have higher GCS. Our findings suggest that disclosure of genetic risk of CHD together with conventional risk estimates is appreciated by patients. Whether this results in improved outcomes needs additional investigation.
| S-EPMC6685535 | biostudies-literature
Project description:We know little about patient-physician communication during visits to discuss diagnosis and treatment of prostate cancer.To examine the overall visit structure and how patients and physicians transition between communication activities during visits in which patients received new prostate cancer diagnoses.Forty veterans and 18 urologists at one VA medical centre.We coded 40 transcripts to identify major communication activities during visits and used empiric discourse analysis to analyse transitions between activities.We identified five communication activities that occurred in the following typical sequence: 'diagnosis delivery', 'risk classification', 'options talk', 'decision talk' and 'next steps'. The first two activities were typically brief and involved minimal patient participation. Options talk was typically the longest activity; physicians explicitly announced the beginning of options talk and framed it as their professional responsibility. Some patients were unsure of the purpose of visit and/or who should make treatment decisions.Visits to deliver the diagnosis of early stage prostate cancer follow a regular sequence of communication activities. Physicians focus on discussing treatment options and devote comparatively little time and attention to discussing the new cancer diagnosis. Towards the goal of promoting patient-centred communication, physicians should consider eliciting patient reactions after diagnosis delivery and explaining the decision-making process before describing treatment options.
| S-EPMC4370798 | biostudies-other
Project description:The objective of this study was to identify how features of Alzheimer's disease (AD) genetic risk disclosure communication relate to patient and visit companion satisfaction. We conducted secondary analyses of 79 session recordings from the fourth REVEAL Study, a randomized-controlled trial of AD genetic risk disclosure among patients with mild cognitive impairment. Patient and companion satisfaction were ascertained from postdisclosure surveys. The Roter Interaction Analysis System (RIAS) was used to code triadic communication between the counselor, patient, and companion. High satisfaction was evident for 24% of patients (N = 19) and 48% of companions (N = 38). Multivariate logistic regressions showed that high patient satisfaction was associated with patients' expression of emotions (OR = 1.1, 95% CI: 1.0-1.1) and companions' questions about psychosocial and lifestyle topics (OR = 1.8, 95% CI: 1.1-2.8). High companion satisfaction was positively related to the RIAS overall patient-centeredness score for the session (OR = 4.0, 95% CI: 1.0-15.6) (all p-values <0.05). Communication predictors of patient and companion satisfaction reflect specific or summary indicators of patient-centeredness. Findings also suggest that visit companions positively influence patient satisfaction. The study results support the growing literature and policy attention directed toward delivering family-centered care.
| S-EPMC6452435 | biostudies-literature
Project description:Conceptual frameworks bring together existing theories and models in order to identify, consolidate, and fill in gaps between theory, practice, and evidence. Given the vast number of possible outcomes that could be studied in genetic counseling, a framework for organizing outcomes and postulating relationships between communication services and genetic counseling outcomes was sought. Through an iterative approach involving literature review, thematic analysis, and consolidation, outcomes and processes were categorized to create and define components of a conceptual framework. The final product, "Framework for Outcomes of Clinical commUnication Services" (FOCUS) contains the following domains: communication strategy; communication process measures; patient care experience, patient changes, patient health; and family changes. A website was created to allow easier access and ongoing modifications to the framework. In addition, a step-by-step guide and two examples were created to show flexibility in how the framework can be used. FOCUS may help in conceptualizing, organizing and summarizing outcomes research related to risk communication and counseling in genetic service delivery as well as other healthcare settings.
| S-EPMC5796847 | biostudies-literature
Project description:Background: There is a bidirectional relationship between blood pressure variability (BPV) and anxiety, but few studies have examined the gender- and age-specific effects of visit-to-visit BPV on incident anxiety. We examined the predictive value of BPV for the incidence of anxiety in a family clinic cohort. Methods: Consecutive patients with a first attendance to family medicine clinics in Hong Kong between January 1, 2000, and December 31, 2002, with at least three blood pressure measurements available thereafter were included. The primary endpoint was incident anxiety as identified by ICD-9 coding. Results: This study included 48,023 (50% males) patients with a median follow-up of 224 [interquartile range (IQR): 217-229] months. Females were more likely to develop incident anxiety compared to males (incidence rate: 7 vs. 2%), as were patients of older age. Significant univariate predictors were female gender, older age, preexisting cardiovascular diseases, respiratory diseases, diabetes mellitus, hypertension, and gastrointestinal diseases, various laboratory examinations, and the number of blood pressure measurements. Higher baseline, maximum, minimum, standard deviation (SD), coefficient of variation (CV), and variability score of diastolic blood pressure significantly predicted incident anxiety, as did all systolic blood pressure measures [baseline, latest, maximum, minimum, mean, median, variance, SD, root mean square (RMS), CV, and variability score]. Conclusions: The relationships between longer-term visit-to-visit BPV and incident anxiety were identified. Female and older patients with higher blood pressure and higher BPV were at the highest risks of incident anxiety.
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Project description:ObjectiveThis study describes the most common cancer-related health information needs among rural cancer survivors and characteristics associated with reporting more information needs.MethodsRural breast, prostate, and colorectal cancer survivors, two to five years post-diagnosis, identified from an institutional cancer registry, completed a mailed/telephone-administered survey. Respondents were asked about 23 health information needs in eight domains (tests and treatment, side effects and symptoms, health promotion, fertility, interpersonal, occupational, emotional, and insurance). Poisson regression models were used to assess relationships between number of health information needs and demographic and cancer characteristics.ResultsParticipants (n = 170) reported an average of four health information needs, with the most common domains being: side effects and symptoms (58 %), health promotion (54 %), and tests and treatment (41 %). Participants who were younger (compared to 5-year increase, rate ratio [RR] = 1.11, 95 % CI = 1.02-1.21), ethnic minority (RR = 1.89, 95 % CI = 1.17-3.06), less educated (RR = 1.49, 95 % CI = 1.00-2.23), and financially stressed (RR = 1.87, 95 % CI = 1.25-2.81) had a greater number of information needs.ConclusionsYounger, ethnic minority, less educated, and financially strained rural survivors have the greatest need for informational support.Practice implicationsThe provision of health information for rural cancer survivors should consider type of cancer, treatments received, and sociocultural differences to tailor information provided.
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Project description:Discernment counseling is designed to help couples considering divorce arrive at a greater sense of clarity and confidence in their decision making about the future of their marriage. Possible outcomes include making no change to the marriage, divorcing, or attempting reconciliation through couples therapy. To date, no research has been done on whether or not discernment counseling helps couples who decide to divorce with their post-divorce family life (i.e., coparenting). We surveyed 11 people (from male-female couples) and conducted in-depth interviews with eight who had undergone discernment counseling and subsequently divorced to see what impact discernment counseling had on their post-divorce coparenting relationship. We analyzed the data from a phenomenological perspective. Respondents described their discernment counseling experience as helpful for achieving clarity and honesty in the divorce decision-making process, they shared their appreciation for the structure of the intervention, and indicated that it led to a greater coparental cooperation post-divorce.
| S-EPMC7894569 | biostudies-literature