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1.
Direct-to-consumer genetic testing has generated speculation about how customers will interpret results and how these interpretations will influence healthcare use and behavior; however, few empirical data on these topics exist. We conducted an online survey of DTC customers of 23andMe, deCODEme, and Navigenics to begin to address these questions. Random samples of U.S. DTC customers were invited to participate. Survey topics included demographics, perceptions of two sample DTC results, and health behaviors following DTC testing. Of 3,167 DTC customers invited, 33% (n?=?1,048) completed the survey. Forty-three percent of respondents had sought additional information about a health condition tested; 28% had discussed their results with a healthcare professional; and 9% had followed up with additional lab tests. Sixteen percent of respondents had changed a medication or supplement regimen, and one-third said they were being more careful about their diet. Many of these health-related behaviors were significantly associated with responses to a question that asked how participants would perceive their colon cancer risk (as low, moderate, or high) if they received a test result showing an 11% lifetime risk, as compared to 5% risk in the general population. Respondents who would consider themselves to be at high risk for colon cancer were significantly more likely to have sought information about a disease (p?=?0.03), discussed results with a physician (p?=?0.05), changed their diet (p?=?0.02), and started exercising more (p?=?0.01). Participants’ personal health contexts—including personal and family history of disease and quality of self-perceived health—were also associated with health-related behaviors after testing. Subjective interpretations of genetic risk data and personal context appear to be related to health behaviors among DTC customers. Sharing DTC test results with healthcare professionals may add perceived utility to the tests.  相似文献   

2.
HLA molecular typing for celiac disease (CD) is a genetic test with a high negative predictive value. The aim of this study is to explore knowledge of and attitudes towards genetic testing (GT). A 25-item questionnaire was developed by a multidisciplinary team and distributed to members of CD support groups across the United States. Respondents (n?=?1835) were mainly female (88 %), married (76 %), and college-educated (55 %), with a median age range of 31–50 years. Those who were married (82 vs 75 %, p?=?0.002), had children (82 vs 74 %, p?<?0.001), and had pursued education beyond high school (81 vs 68 %, p?=?0.004) were more likely to be aware of the availability of GT. On multivariable analysis, adjusting for age, sex, education, marital status, region of residence, and having children, college-education (OR 2.05, 95 % CI: 1.33–3.16) and having children (OR 1.56, 95 % CI: 1.15–2.11) remained significant predictors of GT awareness. A majority of patients with a personal or family history of CD planned GT for their children, and the most common concerns regarding GT were cost and impact on health care and/or insurance. In conclusion, awareness of GT is high among CD support group members. Efforts should be made to increase knowledge of GT in those with a lower educational level, and healthcare professionals should attempt to address concerns regarding GT cost and the impact of results on health care and insurance status.  相似文献   

3.
Spatial working memory (SWM) is known to be impaired in children with ADHD-CT, whether anxiety is present or not. Yet, it remains unclear whether anxiety disorders add to the SWM impairments evident in ADHD-CT and whether these findings extend into adolescents with ADHD-CT and anxiety. Further, it is not yet known whether children and adolescents with carefully defined anxiety disorders alone, demonstrate SWM deficits. This study explored the association of SWM and its strategy and spatial span components in carefully defined children and adolescents (age 6–16 years) with ADHD-CT alone (N?=?163; 14 % female), ADHD-CT and anxiety (N?=?243; 23 % female), anxiety disorders alone (N?=?69; 25 % female) compared to age- and gender-matched healthy control participants (N?=?116; 19 % female). The relationship between SWM and its strategy and span components and core ADHD-CT symptoms and anxiety symptoms were also examined. There was no evidence of an additive effect of ADHD and anxiety on SWM, strategy and spatial span deficits. But, anxiety disorders alone were associated with impaired SWM and span performance compared to healthy control participants. In contrast, strategy did not differ between children and adolescents with anxiety disorders alone and healthy control participants, suggesting that with anxiety span is the most affected component. Further, these findings were age-independent. This study concurs with and extends current influential models about the cognitive effects of anxiety on performance in the setting of ADHD-CT. Clinical implications and future research directions are discussed.  相似文献   

4.
This study’s purpose was to measure clergy’s counseling, referral, and supportive activities for those with depression. Among a Minnesota sample (n?=?367), nearly 80 % (n?=?284) reported counseling their members (mean of 10.25 h/month), with 25 % providing mental health counseling (mean of 2.76 h/month). Ninety-one percent (n?=?336) reported ability to recognize depression, and 64 % (n?=?236) reported moderate to high ability in effectively counseling those with depression. Age, past academic counseling coursework/certification, hours of counseling, and number of individuals counseled were significant predictors of clergy’s self-efficacy in counseling for depression. A mean of 6.14 individuals approached clergy for depression-related help; clergy reported a mean of 3.86 referrals for mental health care. Nearly 90 % stated that one of the roles of the clergy is to provide mental health education.  相似文献   

5.
Using cell-free DNA in maternal serum to detect fetal aneuploidy has been shown to have high sensitivity and specificity. The purpose of this study was to assess attitudes and knowledge of Maternal-Fetal Medicine (MFM) fellows regarding noninvasive prenatal testing (NIPT). A 13 question survey was sent via listserv to US-based MFM fellows. One hundred sixteen fellows responded, a 42.3 % response rate, with >75 % reporting they are comfortable ordering NIPT. Most (82 %) preferred that a patient discuss options with a provider or genetic counselor. Three common methods used to learn about NIPT were: formal educational activities (n?=?78, 69 %), self-review of the literature (n?=?76, 67 %), and discussions with peers (n?=?73, 65 %). On questions related to trisomy 21, accuracy was >70 %. However, accuracy was lower regarding use in twin pregnancies (42 %) and monosomy X screening (50 %).  相似文献   

6.
A major goal of predictive genetic testing is to alert people to their risk before illness onset; however, little is known about how risk perceptions change following genetic testing and whether information is recalled accurately over time. In the United States, a CDKN2A/p16 mutation confers 76 % lifetime risk of melanoma. Following genetic counseling and test reporting, subjective risk estimates and recall of counselor-provided risk estimates were assessed 5 times over the next 2 years among 60 adult members of 2 extended CDKN2A/p16 kindreds. No sustained changes from baseline in risk perceptions were reported. Unaffected carriers (n?=?15) consistently reported significantly lower subjective risk estimates (46 %) than they were actually given (76 %, p?<?0.001) or recalled having been given (60 %, p?<?0.001). Noncarriers’ (n?=?27) risk estimates decreased following results disclosure, but rebounded, with both subjective and recalled estimates subsequently exceeding what they were told by the counselor (both ps?<?0.001). Affected carriers’ (n?=?18) risk estimates for developing a new melanoma corresponded well to counselor-provided information (p?=?0.362). For all 3 patient groups, results were consistent across multiple risk measures and remained similar when demographic, phenotypic, and baseline behavioral contributors to melanoma risk were statistically controlled. These findings are consistent with other studies of risk perception, but additional studies of more diverse populations are needed to understand the reasons behind both the persistence of initial risk estimates and their divergence from information provided by the counselor during genetic counseling. Additionally, determining whether holding subjective risk perceptions that differ from counselor-provided information ultimately affects adherence to management recommendations will help guide the presentation of risk information in genetic counseling practice.  相似文献   

7.
The purpose of this study was to assess primary care physicians’ awareness, experience, opinions and preparedness to answer patients’ questions regarding direct-to-consumer (DTC) genetic testing. An anonymous survey was mailed to 2,402 family and internal medicine providers in North Carolina. Of the 382 respondents, 38.7% (n = 148) were aware of and 15% (n = 59) felt prepared to answer questions about DTC genetic tests. Respondents aged 50 or older were more likely to be aware of DTC genetic testing than those less than 40 years old (OR = 2.42). Male providers were more likely to feel prepared to answer questions than female providers (OR = 2.65). Among respondents who reportedly were aware, family practitioners were more likely than internists (OR = 3.30) to think DTC testing was clinically useful, and 18.9% had patients ask questions or bring in test results. The small percent of physicians who were aware of DTC genetic testing or felt prepared to answer questions about it suggests that education of providers will be necessary if testing becomes more widespread.  相似文献   

8.
This study explores neurologists’ and psychiatrists’ knowledge, attitudes, and practices concerning genetic tests. Psychiatrists (n?=?5,316) and neurologists (n?=?2,167) on the American Medical Association master list who had agreed to receive surveys were sent an email link to a survey about their attitudes and practices regarding genetic testing; 372 psychiatrists and 163 neurologists responded. A higher proportion of neurologists (74 %) than psychiatrists (14 %) who responded to the survey had ordered genetic testing in the past 6 months. Overall, most respondents thought that genetic tests should be performed more frequently, but almost half believed genetic tests could harm patients psychologically and considered legal protections inadequate. Almost half of neurologists (49 %) and over 75 % of psychiatrists did not have a genetics professional to whom to refer patients; those who had ordered genetic tests were more likely than those who did not do so to have access to a genetic counselor. Of respondents, 10 % had received patient requests not to document genetic information and 15 % had received inquiries about direct-to-consumer genetic testing. Neurologists reported themselves to be relatively more experienced and knowledgeable about genetics than psychiatrists. These data, the first to examine several important issues concerning knowledge, attitudes and behaviors of neurologists and psychiatrists regarding genetic tests, have important implications for future practice, research, and education.  相似文献   

9.
To increase accessibility to genetics services for low-urgency patients seeking Ashkenazi Jewish (AJ) carrier screening, we designed an interactive computer (IC) module that provides pre-test genetics education and allows genetics professionals to order the test without meeting the patients beforehand. We compared this module with in-person genetic counseling (GC) using a randomized trial. AJ individuals were randomized to undergo genetics education via the IC module (n = 26) or GC (n = 28). We compared post-interventional genetics knowledge, perceived genetic risk, and anxiety between the two groups, after accounting for pre-interventional scores, using ANCOVA. Wilcoxon Rank-Sum test was used to compare post-interventional satisfaction. Post-interventional genetics knowledge, risk perception, or anxiety were not significantly different between the two groups after accounting for baseline scores (p = 0.50–0.54), although the data are inconclusive regarding the module’s non-inferiority at a 5% margin. Post-intervention satisfaction scores were generally higher in the GC group than the IC module group. Our IC module has the potential to improve access to clinical genetics services for patients and staff, but it is not suitable for all AJ patients and cannot completely replace the benefits of in-person consultations.  相似文献   

10.
The primary aims of this study were to: (a) examine child perceptions of overprotection; and (b) explore how these perceptions relate to child health and adjustment. Children with a prior diagnosis of cancer (n = 205) and children without a history of serious illness (n = 76) reported on parental overprotective and caring behaviors. Children with cancer were recruited from one of four strata based on the elapsed time since their cancer diagnosis (1–6 months; 6–24 months; 2–5 years; >5 years) Children also reported on symptoms of depression, anxiety, and posttraumatic stress. Children with cancer did not differ from healthy children in their perceptions of parental care or overprotection. Child distress was more strongly related to perceptions of care and overprotection than child’s health status. Children with cancer do not report their parents approach to care and protection differently than children without a cancer history. These findings mirror prior research examining parental perceptions of overprotection and suggest that, despite the challenges of parenting a child with serious illness, parental protection is not significantly altered.  相似文献   

11.
Advances in genetics are changing cancer care and requiring institutions to maximize the unique skills of genetics professionals. The identification of genetic syndromes is vital for prevention and management of families with high cancer risks. Despite this, high risk individuals who qualify are often not referred. Genetic counselors could review oncology charts to improve identification. A genetics assessment tool developed by NCI Community Cancer Centers Program was used to perform self-assessment of the genetics program. A weekly report of all new oncology patients was provided to a genetic counselor for chart review. In 2010, 58 % of all eligible patients (n?=?152) were offered a genetics evaluation. In 2011 this improved to 70 % (n?=?167), which was a statistically significant difference, X 2(1)?=?5.13, p?=?0.02. By cancer site, ovarian cancer referrals also showed statistically significant improvement, X 2(1)?=?6.36, p?=?0.01. Breast and colon referrals were improved but not significant. Over 10 months, 129 patients were identified through the chart review program. Three were confirmed to have a genetic mutation for a hereditary cancer syndrome. An average week included review of 73 charts for 10 medical oncologists, 4 radiation oncologists, and 4 pediatric oncologists which generated 60–80 min of work for the genetic counselor. This program improved patient identification and quality, and allowed physicians to become more aware of opportunities for genetic counseling and more patients to receive genetic counseling and testing.  相似文献   

12.
Use of apolipoprotein E genotyping to personalize the risk of a poor recovery after traumatic brain injury is complicated by the potential for genetic discrimination and the potential to reveal an increased risk for late onset Alzheimer’s disease. We developed a survey to gauge interest in testing among athletes participating in National Collegiate Athletic Association programs. Eight hundred and forty seven student-athletes were surveyed to determine their interest in genetic testing, their willingness to share the results of testing with parents, coaches and physicians, their concerns about privacy and/or discrimination, and their interest in genetic counseling. Nearly three quarters of respondents expressed some level of interest in testing, with the largest number describing themselves as ‘possibly interested’ (54.9 %, n = 463) and a smaller number describing themselves as ‘very interested’ (18.9 %, n = 159). Most student-athletes said that receiving secondary information about their risk for late-onset Alzheimer’s disease made them more likely to test (50.6 %, n = 426) rather than less likely to test (12.4 %, n = 104). Student-athletes were open to apolipoprotein E genotyping and willing to share test results with their parents, coaches and physicians. They did not anticipate that test results would impact their behavior or ability to play. Testing programs may be welcome but should provide clear information as to risks and benefits.  相似文献   

13.
Genetic counseling can result in better outcomes when clients understand what to expect, and at least theoretically, at some point in their lifespan, anyone could be referred for or benefit from genetic counseling. Thus, in order to identify (and ultimately address) issues around awareness of genetic counseling and perceptions of its purpose, we surveyed the Canadian general population. We acquired 1,000 telephone numbers corresponding to a demographically representative sample of Canada from Survey Sampling International, and invited individuals to participate in a telephone-based survey. We administered a purpose-designed survey (in either French or English) comprising questions regarding: demographics, whether or not the individual had heard of genetic counseling, and 15 Likert scale-rated (strongly disagree—strongly agree) items about the possible purposes of genetic counseling. Responses to these 15 items were used to generate a total “knowledge score”. Of the 1,000 numbers, n?=?372 could not be reached, and the survey was successfully administered to n?=?188 individuals (response rate 30 %). Most respondents (n?=?129, 69 %) had not heard of genetic counseling, and substantial proportions thought that genetic counseling aims to prevent genetic diseases and abnormalities, help couples have children with desirable characteristics, and help people to understand their ancestry. These data could be used to inform the strategy for development of future awareness efforts, and as a baseline from which to measure their effects.  相似文献   

14.
The primary purpose of the current study was to test a model examining the process by which parent dispositional mindfulness relates to youth psychopathology through mindful parenting and parenting practices. The universality of the model across youth at three developmental stages was examined: young childhood (3–7 years; n?=?210), middle childhood (8–12 years; n?=?200), and adolescence (13–17 years; n?=?205). Overall, participants were 615 parents (55 % female) and one of their 3-to-17 year old children (45 % female). Parents reported on their dispositional mindfulness, mindful parenting, positive and negative parenting practices and their child’s or adolescent’s internalizing and externalizing problems. Consistent findings across all three developmental stages indicated that higher levels of parent dispositional mindfulness were indirectly related to lower levels of youth internalizing and externalizing problems through higher levels of mindful parenting and lower levels of negative parenting practices. Replication of these findings across families with children at different developmental stages lends support to the generalizability of the model.  相似文献   

15.
Three experiments reported here uniquely test the effectiveness of warm versus competent advertising strategy as a function of congruence with other elements of the advertising context. These are product involvement (Experiment 1, n = 96), consumers’ smartphone anxiety (Experiment 2, n = 60), or self-versus other-profitability (Experiment 3, n = 100). As expected, the “golden quadrant” (optimum warmth and competence for advertising effectiveness) does shift: Competence is more important for high-involving products, but warmth wins for highly anxious participants or when the highly involving service is accompanied by people-focused appeals. An expansion of the stereotype content model is discussed in the context of the congruity principle.  相似文献   

16.
Many questions remain concerning whether, when, and how physicians order genetic tests, and what factors are involved in their decisions. We surveyed 220 internists from two academic medical centers about their utilization of genetic testing. Rates of genetic utilizations varied widely by disease. Respondents were most likely to have ordered tests for Factor V Leiden (16.8 %), followed by Breast/Ovarian Cancer (15.0 %). In the past 6 months, 65 % had counseled patients on genetic issues, 44 % had ordered genetic tests, 38.5 % had referred patients to a genetic counselor or geneticist, and 27.5 % had received ads from commercial labs for genetic testing. Only 4.5 % had tried to hide or disguise genetic information, and <2 % have had patients report genetic discrimination. Only 53.4 % knew of a geneticist/genetic counselor to whom to refer patients. Most rated their knowledge as very/somewhat poor concerning genetics (73.7 %) and guidelines for genetic testing (87.1 %). Most felt needs for more training on when to order tests (79 %), and how to counsel patients (82 %), interpret results (77.3 %), and maintain privacy (80.6 %). Physicians were more likely to have ordered a genetic test if patients inquired about genetic testing (p?<?.001), and if physicians had a geneticist/genetic counselor to whom to refer patients (p?<?.002), had referred patients to a geneticist/genetic counselor in the past 6 months, had more comfort counseling patients about testing (p?<?.019), counseled patients about genetics, larger practices (p?<?.032), fewer African-American patients (p?<?.027), and patients who had reported genetic discrimination (p?<?.044). In a multiple logistic regression, ordering a genetic test was associated with patients inquiring about testing, having referred patients to a geneticist/genetic counselor and knowing how to order tests. These data suggest that physicians recognize their knowledge deficits, and are interested in training. These findings have important implications for future medical practice, research, and education.  相似文献   

17.
A lack of perceived control over anxiety-related situations is theorized to be characteristic of anxiety disorders in children and adolescents. In the current study we tested several theoretical predictions and developmental variation with the Dutch translation of the Anxiety Control Questionnaire for Children (ACQ-C). The theoretical factor structure of anxiety control was tested using Confirmatory Factor Analysis (CFA) in 548 non-referred children (8–18 years old, M?=?12.5 years; 50.7 % girls). The incremental predictive validity of perceived control for anxiety status was assessed using logistic regression in 141 clinically anxious children (age M?=?12.6 years; 56.7 % girls) and 298 non-referred non-anxious children (age M?=?12.6 years; 52.7 % girls). CFA showed that both a one-factor model and two-factor model (perceived control over internal reactions and external events) fit well. The one-factor model proved invariant across age and gender. Internal consistency was excellent (Cronbach’s α?=?.93). Two-month test-retest reliability was adequate. The ACQ-C was able to incrementally predict diagnostic status, even after controlling for age, gender and self-reported anxiety symptoms. Finally, both younger children and girls reported less perceived control, independent of anxiety level. Findings advance the understanding of the psychometric properties of the ACQ-C, the role of control in childhood anxiety and point to the potential utility of the ACQ-C in both clinical and community samples. The Dutch translation of the ACQ-C demonstrated sound psychometric properties.  相似文献   

18.
This study investigated parenting behaviors of mothers and fathers of clinically anxious preschool children (with or without depressive comorbidity) and healthy comparison children. Studies assessing children from early school age onwards have found that parental control, rejection, and inconsistent discipline are associated with the presence of children’s internalizing symptoms/disorders. Despite the scarcity of studies investigating these associations at preschool age, we assumed that findings with older children would also apply to children in this age group. In a cross-sectional study we assessed N = 176 children of preschool age (M = 5; 2 years) and both of their parents. A diagnostic interview (Preschool Age Psychiatric Assessment) was conducted to determine children’s psychiatric diagnoses, yielding the following results: a group of n = 67 children with pure anxiety disorders (AD group), a group of n = 38 children with anxiety disorders with depressive comorbidity (AD/DC group), and a comparison group of n = 71 children without psychiatric disorders. Both parents completed the German extended version of the Alabama Parenting Questionnaire. We evaluated maternal depressive symptoms and children’s temperament as further correlates. All variables that differed significantly between groups were entered into multinomial logistic regression analyses to test which variables predict group membership. When comparing each of the two anxiety groups with the comparison group we obtained the following results: (1) Inconsistent paternal discipline and maternal depressive symptoms increased and children’s positive affectivity decreased the probability of children of being in the AD group rather than in the comparison group. (2) Maternal overinvolvement, maternal depressive symptoms and children’s negative affectivity increased and children’s positive affectivity decreased the probability of children of belonging to the AD/DC group rather than to the comparison group. When comparing the two anxiety groups with each other, we found that inconsistent paternal discipline increased and children’s negative affectivity decreased the probability of children of being in the AD group rather than in the AD/DC group. The results suggest that paternal parenting behaviors show different associations with internalizing disorders at preschool age than maternal parenting behaviors. This underlines the importance of including fathers in the prevention and treatment of internalizing disorders at preschool age.  相似文献   

19.
Pregnant women undergoing prenatal genetic testing should receive genetic counseling so they can make informed decisions. We examined the current state of providing genetic counseling in Japan to pregnant women before they elected amniocentesis for prenatal diagnosis of chromosome abnormalities and after test results were completed, and explored the opportunity for expanding access to certified genetic counselors (CGC) at clinical practices offering amniocentesis. An anonymous survey was mailed to the 298 hospitals that referred amniotic fluid specimens to LabCorp Japan in 2009. Most genetic counseling was provided by the obstetrician alone; 73.8 % (76/103) of pre-amniocentesis, 82.5 % (85/103) if normal results, and 49.4 % (44/89) if abnormal results. Respondents spent limited time in genetic counseling; 57.3 % spent <10 min for pre-amniocentesis, 88.3 % spent <10 min for normal results, and 54.0 % spent <20 min for abnormal results. While 45.8 % indicated that CGC do not have an essential role in clinical practice, responses that supported employment of CGC were more likely to come from hospitals that submitted more than ten specimens annually (p?<?0.0001), university hospitals (p?<?0.0001), and MD geneticists (p?=?0.020). Currently, there is limited genetic counseling available in Japan. This indicates there are opportunities for the employment of CGC to improve the quality of genetic counseling.  相似文献   

20.
Primary care medical providers (PCPs) have become de facto providers of services for the management of both mental and chronic illnesses. Although some reports suggest that PCPs favor having Behavioral Health colleagues provide behavioral health services in primary care, others demonstrate this view is necessarily not universal. We examined attitudes regarding behavioral health services among PCPs in practices that offer such services via onsite behavioral health providers (n = 31) and those that do not (n = 62). We compared referral rates and perceived need for and helpfulness of behavioral health colleagues in treating mental health/behavioral medicine issues. In both samples, perceived need was variable (5?C100%), as were PCPs?? views of their own competence in mental health/behavioral medicine diagnosis and treatment. Interestingly, neither sample rated perceived access to behavioral health providers exceptionally high. Referral rates and views about the helpfulness of behavioral health services, except in relation to depression and anxiety, were lower than expected. These results suggest a need for increased collaboration with and education of PCPs about the roles and skills of behavioral health professionals.  相似文献   

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