AN ASSESSMENT OF KNOWLEDGE AND ATTITUDES OF GENETIC COUNSELING SERVICES IN U.S. HTCs

Hemophilia is a hereditary bleeding disorder which requires lifelong specialized care. A network of Hemophilia Treatment Centers (HTCs) exists to meet the medical needs of patients affected by hemophilia. Genetic counseling services are an integral part of the HTC model of care; however, many HTCs do not have genetic counselors on staff. As a result, the duty to provide these services must fall to other healthcare providers within the HTC. To assess the knowledge and attitudes of these providers we developed a 49 question survey that was distributed electronically to hematologists and nurses at U.S. HTCs. The survey consisted of a three sections: demographic information, knowledge of hemophilia genetics, and attitudes towards genetic services. A total of 111 complete responses were received and analyzed. The average knowledge score among all participants was 74.8% with a total of 81 participants receiving a passing score of 70% or above. Thirty participants scored below 70% in the knowledge section. In general, attitude scores were high indicating that the majority of hematologists and nurses in HTCs feel confident in their ability to provide genetic counseling services. Over 90% of participants reported that they have some form of access to genetic counseling services at their center. Hematologists and nurses practicing in U.S. HTCs demonstrate sufficient knowledge of the genetics of hemophilia, and they generally feel confident in their ability to provide genetic counseling services to their patients. While their knowledge is sufficient, the average knowledge score was lower than 75%. Certain questions covering new genetic technologies and testing practices were more commonly missed than questions asking about more basic aspects of hemophilia genetics, such as inheritance and carrier testing. Finally, many clinics report having access to a counselor, but it is oftentimes a hematologist or nurse who is providing genetic counseling services to patients. Given the inconsistency in knowledge among providers coupled with the high confidence in one’s ability to counsel patients, it leaves room to question whether information about the genetics of hemophilia is being communicated to patients in the most appropriate and accurate manner.

Tailored instructional methods for students with diverse levels of computer knowledge and skills

The purpose of this online course is to ensure new nursing graduate students know how to use computer technologies required to complete academic and research activities. Powerful computers, high speed internet, digitalized resources and databases are widely available in educational institutes. New renovation and updates are being released at faster pace than ever. All these developments are necessary for a student to utilize computer programs and synthesize large amount of data in a limited time for any given academic research project. [See PDF for complete abstract]

Knowledge and Perception of the Role of Targeted Ultrasound in Detecting Down Syndrome Among a High Risk Population

The purpose of this study was to determine the perception and knowledge of targeted ultrasound in women who screen positive for Down syndrome in the first or second trimester, and to assess the perceived detection rate of Down syndrome by targeted ultrasound in this population. While several studies have reported patient perceptions’ of routine ultrasound, no study has specifically examined knowledge regarding the targeted ultrasound and its role in detecting Down syndrome. A targeted ultrasound is a special ultrasound during the second trimester offered to women who may be at a higher-than-average risk of having a baby with some type of birth defect or complication. The purpose of the ultrasound is to evaluate the overall growth and development of the baby as well as screen for birth defects and genetic conditions. Women under the age of 35 referred for an abnormal first or second trimester maternal serum screen to several Houston area clinics were asked to complete a questionnaire to obtain demographic and ultrasound knowledge information as well as assess perceived detection rate of Down syndrome by ultrasound. Seventy-seven women completed the questionnaire and participated in the study. Our findings revealed that women have limited background knowledge about the targeted ultrasound and its role in detecting Down syndrome. These findings are consistent with other studies that have reported a lack of understanding about the purpose of ultrasound examinations. One factor that seems to increase background knowledge about the targeted ultrasound is individuals having a higher level of education. However, most participants regardless of race, education, income, and exposure to targeted ultrasound information did not know the capabilities of a targeted ultrasound. This study confirmed women lack background knowledge about the targeted ultrasound and do not know enough about the technology to form a perception regarding its ability to detect Down syndrome. Additional studies to identify appropriate education techniques are necessary to determine how to best inform our patient population about targeted ultrasound.

Nutrition knowledge and attitudes of physician assistants in Texas

Physician Assistants (PAs) are increasingly assuming more responsibilities as "front-line" health providers due to emphasis on primary care and cost-containment in the rapidly changing health care environment. Nutrition plays an important role in health promotion and disease prevention. Primary care providers, including PAs, have enormous potential as nutrition counselors and advocates. There have been no studies to date that address the PAs' adequacy of nutrition education or their attitudes toward the value of nutrition. Therefore, it was the purpose of the study to determine the nutrition knowledge and attitudes of PAs in Texas.^ All certified physician assistants in Texas were eligible for the study. A mailed survey was sent to 1,482 PAs in Texas with a response rate of 54.2%. The sample utilized for data analysis was 764 PAs.^ The study compared the nutrition knowledge mean scores for PAs who graduated from a PA program greater than 11 years ago with those who graduated less than 11 years ago. The study also examined Texas PAs' attitudes about their nutrition education training, the value of nutrition counseling, and their perceived ability to provide such nutrition counseling. Demographic and practice information was collected from the PAs. Demographically, PAs in Texas were found to be comparable to the national population of PAs surveyed in 1996.^ The overall mean level of nutrition knowledge was 70% correct. The mean level of nutrition knowledge was significantly related to the type of PA program that the PA graduated from (i.e., Certificate only or Master's degree level). No significant relationships were found between the mean nutrition knowledge score and age, year of graduation, length of practice, or the type of nutrition education provided in PA program.^ The majority of the PAs surveyed felt that diet and nutrition has an important role in disease prevention and felt that PA programs should place a greater emphasis on nutrition education. Many PAs surveyed were not satisfied with the amount of nutrition education they had received in their PA education programs and were not confident in their ability to provide nutrition counseling to patients.^ Suggestions are offered for improvement in PA nutrition education in the areas of both nutrition knowledge and patient counseling skills. In addition, this study recommends developing and strengthening partnerships between PAs and nutrition organizations. ^

Health promotion attitudes and practices of Texas nurse practitioners

The purpose of this descriptive cross-sectional survey was to examine the health promotion attitudes and practices of Texas nurse practitioners and to evaluate the applicability of the Theory of Reasoned Action and the Theory of Planned Behavior as a theoretical model to guide nurse practitioner health promotion research. A questionnaire developed to elicit responses regarding demographic information, practice characteristics, behavior, behavior intention, attitudes toward health promotion, subjective norm and perceived behavioral control for health promotion practices was mailed to the home address of 727 Texas nurse practitioners. The majority of the 442 respondents reported positive attitudes toward health promotion. Texas nurse practitioners provide health promotion for more than 50% of their patients. Significant barriers to the provision of health promotion cited by Texas nurse practitioners were lack of time, lack of reimbursement and lack of patient desire to change behavior. The findings of this study support the use of the Theory of Reasoned Action and the Theory of Planned Behavior in nurse practitioner research. ^

An ecologic comparison study of the impact of economic disadvantage on Texas Assessment of Knowledge and Skills performance, graduation rates, and readiness for higher education for students attending public and charter schools in Texas from 2004 to 2006

Purpose. No Child Left Behind aimed to "improve the academic achievement of the disadvantaged." The primary research question considered how academic achievement of those from economic disadvantage compared to those not from disadvantage? ^ Economically disadvantaged students can potentially have added academic disadvantage. Research shows low academic achievement can potentially result in drug abuse, youth violence, and teen pregnancy. ^ Methods. To compare the student populations, measures included TAKS results and academic indicator data collected by the Texas Education Agency. ^ Results. T-test analyses showed a significant difference between the economically and non-economically disadvantaged student populations in meeting the TAKS passing standard, graduation, and preparation for higher education.^ Conclusions. The achievement gap between students remained as indicated by the Texas testing program. More research and time are needed to observe if the desired impact on those from economic disadvantage will be reflected by academic achievement data.^

Influenza vaccination and peoples' knowledge and attitudes towards it: Factors that influenced influenza vaccination during the 2004--2005 influenza vaccine shortage

Influenza and pneumonia together comprise the seventh leading cause of death among adults in the U.S and were responsible for 65,163 deaths in 2003 and an average of 36,000 deaths per year in the United States from 1990 to 1999. Vaccination is efficacious and cost-effective in terms of preventing the infection and reducing both health care costs and productivity losses associated with influenza illness. The vaccine shortage of 2004–2005 resulted in a 39% decrease in the influenza vaccine supplies. During the fall of 2004, we conducted a nationwide, random-digit dialing, telephonic-interview survey of 1,202 adults aged 18 years and older to ascertain influenza vaccine knowledge, attitude and behavior. Of the 1,202 total interviewed subjects, 44.7% had received or intended to receive vaccine at the time of the survey (2004–05) and 39.6% had received the influenza vaccine the previous year (2003–04). Receipt of vaccine increased with previous receipt of the influenza vaccine (OR 13.17, 95% CI 8.65–20.08), increased motivation status (OR 7.58, 95% CI 4.03–14.25), subjective risk status (OR 3.33, 95% CI 2.23–4.97), age (OR 1.83, 95% CI 1.22–2.75) and previous receipt of the pneumococcal vaccine (OR 1.75, 95% CI 1.02–3.0). The influenza vaccine shortage of 2004–05 did not have a negative impact on the vaccination rates of study population. In addition to the increased rates, a large majority of respondents were also aware of the shortage of influenza vaccine during the 2004–05 season, about the indications for receiving the influenza vaccine, about alternative methods to prevent contracting the influenza and increased motivation to receive the vaccine. ^

Physician knowledge and beliefs toward hospice and the effect on hospice referral in El Paso, Texas

Hospice care has existed in the United States for over 20 years yet referral rates to hospice services are still well under the 180 days allowed by the Medicare Hospice Benefit. The average length of stay in El Paso is 56.8. ^ The aim of this study was to ascertain physician’s knowledge and attitudes towards hospice referral in the El Paso County. Particular issues to be addressed were: Physician’s knowledge of patient’s eligibility criteria and perception of the type of services provided by hospice. Other issues included, physician’s comfort level and willingness to determine terminal diagnosis and to discuss hospice services. Furthermore, physician’s perceptions of barriers to hospice referrals and how those perceptions differ between physicians who refer as compared to those who do not refer. ^ There were seven hypothesis tested to determine physicians knowledge and perceptions of hospice services. Using a mail-survey developed by Ogle, Mavis and Wang, this study surveyed 165 cardiologists, pediatric cardiologists, gastroenterologists, pulmonologists, neurologists, nephrologists, family practice, internists, oncologists, and pediatric oncologists. A t-test was used to test a comparison of means of categorical associations for all hypotheses. The data in the current study however, did not support the hypotheses tested. ^ Results indicated that physicians (52%) are knowledgeable with the eligibility criteria for hospice and that 95% are knowledgeable of the services hospice offers. Research findings appear to indicate physicians are not the hindering factor when making referrals to hospice. Physicians (46%) felt that one of the strongest barriers to hospice referrals is the patient/family unwillingness to accept hospice services. This offers an opportunity for future research in patients/families behavioral attitudes and beliefs toward death and dying issues and their perception of hospice services. ^

Social cognitive theory and factors associated with Mexican-American parents' beliefs, attitudes and practices regarding communication with their adolescent children about sex

Latinos have the highest teen birth rate nationally. Cameron County, Texas is primarily Latino (Mexican-American). This mixed-method study (n=43) examines Mexican-American parents of adolescents' beliefs, attitudes and practices regarding communication with their adolescent children about sex. Social Cognitive Theory (SCT) constructs self-efficacy, behavioral determinism, environment, outcome expectations and reciprocal determinism can be influences on frequency and quality of parent-adolescent sex communication.^ This study describes Mexican-American parents' of adolescents recollections of their own experiences associated with learning about sexuality. It also examines the attitudes and practices regarding communication about sex and the self-efficacy and behavioral capability of participants to teach their adolescent children about sex and sexually transmitted infections. ^ Negative childhood experiences (shame, lies and trauma) of the parents in this study played a key role in terms of their desire to communicate more comprehensively about sexuality with their own children than did their parents. While participants' reported low self-efficacy and behavioral capability to communicate with their adolescent children about sex, they reported relatively high frequency and quality of communication, with 75% of participants receiving a high quality score and over 44% reporting frequent communication with their adolescent children about sex. A Chi square analysis and Fisher's Exact Score revealed no association between acculturation status, gender or having a child who has mothered/fathered a baby and the frequency or quality of communication about sex with adolescent children. Study participants also gave specific recommendations for method, content and setting of sex education for their children and themselves. Promotora delivery of information and education in a comfortable, culturally appropriate neighborhood setting, as well as parent –child learning sessions were identified as possible approaches to address improve self-efficacy and behavioral capability of parents communicating with their adolescent children about sex.^ The results of this analysis provide public health practitioners and interested community entities data to identify and develop interventions that use a theoretical, evidence-based framework for culturally appropriate interventions to encourage and equip Mexican-American parents to effectively communicate with their adolescent children about sexuality, and ultimately to address the high rates of teen pregnancy in this U.S.-Mexico border community. ^

Mexican Americans' awareness, knowledge, and beliefs of hypertension

Cardiovascular disease (CVD) is the number one cause of death for people in Texas as well as Mexico. The progressive morbidity and mortality of CVD can be prevented initially and controlled through regular health screenings or visits to the physician where health markers such as hypertension can be detected and treated. Yet, many people go unaware of existing hypertension not only due to lack of access to health care but to their own personal beliefs, ideas, or perceived barriers that prevent them from seeking preventative health care. ^ The main purpose of this study was to evaluate whether individuals of Mexican origin, who have some form of medical coverage, posses more knowledge, more perceived severity, less perceived barriers, and greater self-efficacy in regards to hypertension than those individuals who have no medical coverage. This was done by addressing the following specific aims: 1.To evaluate the association between individuals who have health care coverage and those who do not have health care coverage in regards to their beliefs of hypertension; 2. To evaluate if there exists a variation among the respondents demographic data and their beliefs of hypertension. ^ The total number of respondents were 150; with 75 being from Cuidad Juarez, and 75 being from El Paso, Texas. The results indicated that the individuals with some form of medical coverage perceived themselves to be more susceptible to suffering a cardiac event or developing heart disease than those who had no form of medical coverage. The individuals with some form of health care coverage also found themselves having less perceived barriers than those who had no health care coverage. The level of education seemed to have some association with individuals perceiving themselves as being susceptible to experiencing a cardiac event if they do not control their hypertension. Regarding self-efficacy, or the self-reported confidence in performing certain behaviors to controlling hypertension, those individuals who perceived themselves as having no self-efficacy had a lower level of education, compared to those who did perceive themselves as possessing self-efficacy. The findings of this study indicate that beliefs regarding hypertension and medical coverage are variables that need to be investigated further for individuals in the El Paso and Cuidad Juarez region. ^

Knowledge and Attitudes of Young People in Nigeria about HIV/AIDS---A systematic review

Background: HIV/AIDS has remained one of Nigeria's biggest health and social issues for decades. People aged between 10 and 24 are the most affected. Research into why this population subset is affected is very pertinent. We therefore conducted a systematic review of the Knowledge and Attitudes of young people in Nigeria about HIV/AIDS to understand where the gaps between knowledge and attitudes can be bridged. ^ Methods: We conducted searches in Medline, PubMed, African Index Medicus, Cumulative Index of Nursing and Allied Health. WHO and UNAIDS documents were also searched. Other journals were hand searched. Searches were for studies between 1986 (when HIV/AIDS was first reported in Nigeria) till date. In addition, data abstraction and quality assessment were done. ^ Results: 279 titles and abstracts were found and 33 articles in full text were appraised critically and 17 articles were selected based on our criteria. This revealed a dearth of well conducted studies in the literature despite the enormity of the HIV/AIDS epidemic. Constructs for Knowledge and attitudes were itemized on two tables for each article based on the Health Belief Model. Even though many of the studies showed high level of knowledge about HIV/AIDS, it did not impact attitudes about the disease. Also fear and anxiety prevented participants from acquiring knowledge. These recurring themes arguably were not limited to any region or area, background or group. ^ Conclusion: There is a need for future research to be culturally sensitive with a focus on attitudes and correction of misconceptions about HIV/AIDS among our youth.^

Sociocultural context of knowledge and beliefs about cardiovascular disease among Latino women

We formed an academic-community partnership with the Salsa Caliente program to undertake a project to better understand how Latina women with cardiovascular disease (CVD) or at risk of CVD view and understand CVD. This study's research question examines the sociocultural factors that influence and inform Latino women's perceptions and beliefs about CVD. Seven out the eleven participants in the Salsa Caliente program consented to be interviewed. The data was collected through recorded interviews, which were transcribed and then analyzed for common themes found among all the participants' narratives. The content analysis looking into common themes yielded four: 1) increased awareness of CVD, 2) trust in doctor, 3) delay in doctor visits, and 4) awareness of health. Implications for interventions and further research are discussed.^

Knowledge and Expectations of Support People in Prenatal Genetic Counseling Sessions

Prenatal genetic counseling patients have the ability to choose from a myriad of screening and diagnostic testing options, each with intricacies and caveats regarding accuracy and timing. Decisions regarding such testing can be difficult and are often made on the same day that testing is performed. Therefore, it is reasonable to consider that the support people brought to an appointment may have a role in the decision-making process. We aimed to better define this potential role by examining the incoming knowledge and expectations of support people who attended prenatal genetic counseling appointments. Support people were asked to complete a survey at one of seven Houston area prenatal clinics. The survey included questions regarding demographics, relationship to patient, incoming knowledge of the appointment, expectations of decision-making and perceived levels of influence over the decisions that would be made during the counseling session. The majority (79.4%) of the 252 participants were spouses/partners. Overall, there was poor knowledge of the referral indications with only 33.5% of participants correctly identifying the patient’s indication. Participants had even poorer knowledge of testing options that would be offered during the session, as only 17.7% were able to correctly identify testing options that would be discussed during the genetic counseling session. Of participants, just 3.6% said that they did not want to be included in discussions about screening/testing options. Only a few participants thought that they had less influence over decisions related to the pregnancy than over non-pregnancy decisions. Participants who reported feeling like they had a higher level of influence were likely to attend more of the pregnancy-related appointments with the patient. Findings from this study have provided insight into the perspective of support persons and have identified gaps in knowledge that may exist between the patients and the people they choose to bring with them into the genetic counseling session. In addition, this study is a starting point to assess how much the support people think that they impact the decision-making process of prenatal genetic counseling patients versus how much the prenatal patients value the input of the support people.

ATTITUDES AND PRACTICES OF GENETIC COUNSELORS IN PROVIDING PREDICTIVE TESTING TO MINORS AT RISK FOR LI-FRAUMENI SYNDROME

Li- Fraumeni Syndrome (LFS) is a rare autosomal dominant hereditary cancer syndrome caused by mutations in the TP53 gene that predisposes individuals to a wide variety of cancers, including breast cancer, soft tissue sarcomas, osteosarcomas, brain tumors, and adrenocortical carcinomas. Individuals found to carry germline mutations in TP53 have a 90% lifetime cancer risk, with a 20% chance to develop cancer under the age of 20. Despite the significant risk of childhood cancer, predictive testing for unaffected minors at risk for LFS historically has not been recommended, largely due to the lack of available and effective screening for the types of cancers involved. A recently developed screening protocol suggests an advantage to identifying and screening children at risk for LFS and we therefore hypothesized that this alongside with the availability of new screening modalities may substantiate a shift in recommendations for predictive genetic testing in minors at risk for LFS. We aimed to describe current screening recommendations that genetic counselors provide to this population as well as explore factors that may have influenced genetic counselors attitude and practice in regards to this issue. An online survey was emailed to members of the National Society of Genetic Counselors (NSGC) and the Canadian Association of Genetic Counsellors (CAGC). Of an estimated 1000 eligible participants, 172 completed surveys that were analyzed. Genetic counselors in this study were more likely to support predictive genetic testing for this population as the minor aged (p

Culturally sensitive cancer education: Effect on knowledge, cancer fatalism, and participation in mobile mammography screening among African-American women

Purpose. To evaluate the effectiveness of a culturally sensitive educational intervention that used an African American lay survivor of breast cancer to increase knowledge of breast cancer, decrease cancer fatalism, and increase participation in mobile mammography screening among African American women. ^ Design. Experimental pretest/posttest design. ^ Setting. Two predominantly African American churches in a large southwestern metropolitan city. ^ Sample. Participants included 93 African American women, 40 years of age and older. Participants were randomly assigned to an intervention group (n = 48) or a control group (n = 45). ^ Methods. Pretest and post-test measures included the Breast Cancer Knowledge Test and the Powe Fatalism Inventory. In addition, demographic and breast screening practices were collected by questionnaire. The intervention group received a breast cancer educational testimonial from an African American lay survivor of breast cancer, who answered questions and addressed concerns, while stressing the importance of taking responsibility for one's own health and spreading disease prevention messages throughout the African American community. The control group viewed the American Cancer Society “Keep In Touch” video prepared specifically for African American women. Participants in both groups were given culturally sensitive educational materials designed to increase knowledge about breast cancer, and were instructed on breast self-examination by an African American registered nurse, using ethnically appropriate breast models. In addition, after the post-test, all eligible participants were given an opportunity to have a free mammogram via a mobile mammography unit parked at the church. ^ Findings. Participants in the intervention group had a significant increase (p = .03) in knowledge of breast cancer and a significant decrease (p = .000) in fatalism scores compared to those individuals in the control group. The intervention group had a 61% participation rate in screening, while the control group had a 39% participation rate in screening. However, the difference was not statistically significant at the .05 level (p = .07). ^ Conclusions. Results demonstrate that culturally sensitive breast cancer education is successful in increasing knowledge and decreasing cancer fatalism. While there was a trend toward behavior change in the intervention group, more research needs to be done in this area. ^