Attitudes of Parents at risk of inheriting Li-Fraumeni Syndrome towards predictive genetic testing in their minor-aged children.

Li-Fraumeni Syndrome (LFS) is a hereditary cancer syndrome which predisposes individuals to cancer beginning in childhood. These risks are spread across a lifetime, from early childhood to adulthood. Mutations in the p53 tumor suppressor gene are known to cause the majority of cases of LFS. The risk for early onset cancer in individuals with Li-Fraumeni Syndrome is high. Studies have shown that individuals with LFS have a 90% lifetime cancer risk. Children under 18 have up to a 15% chance of cancer development. Effectiveness of cancer screening and management in individuals with Li-Fraumeni Syndrome is unclear. Screening for LFS-associated cancers has not been shown to reduce mortality. Due to the lack of effective screening techniques for childhood cancers, institutions vary with regard to their policies on testing children for LFS. There are currently no national guidelines regarding predictive testing of children who are at risk of inheriting LFS. No studies have looked at parental attitudes towards predictive p53 genetic testing in their children. This was a cross-sectional pilot study aimed at describing these attitudes. We identified individuals whose children were at risk for inheriting p53 genetic mutations. These individuals were provided with surveys which included validated measures addressing attitudes and beliefs towards genetic testing. The questionnaire included qualitative and quantitative measures. Six individuals completed and returned the questionnaire with a response rate of 28.57%. In general, respondents agreed that parents should have the opportunity to obtain p53 genetic testing for their child. Parents vary in regard to their attitudes towards who should be involved in the decision making process and at what time and under what considerations testing should occur. Testing motivations cited most important by respondents included family history, planning for the future and health management. Concern for insurance genetic discrimination was cited as the most important “con” to genetic testing. Although limited by a poor response rate, this study can give health care practitioners insight into testing attitudes and beliefs of families considering pediatric genetic testing.

Ambulatory care adverse events and preventable adverse events leading to a hospital admission.

BACKGROUND: Most healthcare in the US is delivered in the ambulatory care setting, but the epidemiology of errors and adverse events in ambulatory care is understudied. METHODS: Using the population-based data from the Colorado and Utah Medical Practices Study, we identified adverse events that occurred in an ambulatory care setting and led to hospital admission. Proportions with 95% CIs are reported. RESULTS: We reviewed 14,700-hospital discharge records and found 587 adverse events of which 70 were ambulatory care adverse events (AAEs) and 31 were ambulatory care preventable adverse events (APAEs). When weighted to the general population, there were 2608 AAEs and 1296 (44.3%) APAEs in Colorado and Utah, USA, in 1992. APAEs occurred most commonly in physicians' offices (43.1%, range 46.8-27.8), the emergency department (32.3%, 46.1-18.5) and at home (13.1%, 23.1-3.1). APAEs in day surgery were less common (7.1%, 13.6-0.6) but caused the greatest harm to patients. The types of APAEs were broadly distributed among missed or delayed diagnoses (36%, 50.2-21.8), surgery (24.1%, 36.7-11.5), non-surgical procedures (14.6%, 25.0-4.2), medication (13.1%, 23.1-3.1) and therapeutic events (12.3%, 22.0-2.6). Overall, 10% of the APAEs resulted in serious permanent injury or death. The proportion of APAEs that resulted in death was 31.8% for general internal medicine, 22.5% for family practice and 16.7% for emergency medicine. CONCLUSION: An estimated 75,000 hospitalisations per year are due to preventable adverse events that occur in outpatient settings in the US, resulting in 4839 serious permanent injuries and 2587 deaths.

Consumer satisfaction with primary care provider choice and associated trust

Trust is important in medical relationships and for the achievement of better health outcomes. Developments in managed care in the recent years are believed to affect the quality of healthcare services delivery and to undermine trust in the healthcare provider. Physician choice has been identified as a strong predictor of provider trust but has not been studied in detail. Consumer satisfaction with primary care provider (PCP) choice includes having or not having physician choice. This dissertation developed a conceptual framework that guided the study of consumer satisfaction with PCP choice as a predictor of provider trust, and conducted secondary data analyses examining the association between PCP choice and trust, by identifying factors related to PCP choice satisfaction, and their relative importance in predicting provider trust. The study specific aims were: (1) to determine variables related to the factors: consumer characteristics and health status, information and consumer decision-making, consumer trust in providers in general and trust in the insurer, health plan financing and plan characteristics, and provider characteristics that may relate to PCP choice satisfaction; (2) to determine if the factors in aim one are related to PCP choice satisfaction; and (3) to analyze the association between PCP choice satisfaction and provider trust, controlling for potential confounders. Analyses were based on secondary data from a random national telephone survey in 1999, of residential households in the United States which included respondents aged over 20 and who had at least two visits with a health professional in the past two years. Among 1,117 eligible households interviewed (response rate 51.4%), 564 randomly selected to respond to insurer related questions made up the study sample. Analyses using descriptive statistics, and linear and logistic regressions found continual effective care and interaction with the PCP beyond the medical setting most predictive of PCP choice satisfaction. Four PCP choice satisfaction factors were also predictive of provider trust. Findings highlighted the importance of the PCP's professional and interpersonal competencies for the development of sustainable provider trust. Future research on the access, utilization, cognition, and helpfulness of provider specific information will further our understanding of consumer choice and trust. ^

Demographics of having a gun in the home in Columbia, SC as reported by women primary care patients

Objectives. To determine demographic correlates of having one or more guns in the household of women primary care patients in the southern USA. ^ Methods. All participants in this cross-sectional study were women aged 18-65 who were insured by either Medicaid or a managed care provider and had ever had an intimate sexual relationship with a male partner that lasted at least three months. Prevalence rate ratios and 95% confidence intervals were calculated using stratified analyses for having a gun in the home and the following demographic factors: age, race, educational attainment, marital status, employment status, and alcohol/drug use. ^ Results. Twenty six percent of households had at least one gun and 6.5% had 3 or more guns. The following demographic characteristics of women were associated with having a gun in the household: age (>40) (prevalence rate ratio [PRR] = 1.4; 95% confidence interval [CI] = 1.1–1.8); White race (PRR = 1.89; 95% CI = 1.61–2.27); currently being employed (PRR = 1.72; 95% CI = 1.22–2.44); higher education; and being insured by an HMO (PRR = 1.92; 95% CI = 1.47–2.50). Neither the partner's unemployment nor his substance use was associated with having a gun. While White households were more likely to have a gun, the same correlates of gun ownership held for both White and African-American households; being married or living as married and higher socio-economic status (i.e. HMO insurance and being employed) were strongly correlated with gun in the household. The following were correlated with having multiple guns in the household: White race (p < 0.0001); increased age (p = 0.005); being currently married or living as married (p < 0.0001); and HMO insured status (p < 0.0001). Among those households with at least one gun, White race and married or currently living as married were associated with having 2 or more guns relative to one gun in the household. ^ Conclusions. Currently living with a man and being of higher socio-economic status were strong correlates of household gun ownership among both Whites and African-Americans. Substance use was not associated with household gun ownership. ^

The care to share HIV disclosure study - the attitudes toward and beliefs about HIV disclosure among perinatally-infected HIV-positive youth and their caregivers

HIV incidence has not changed since the introduction of the pandemic. Daily 14,000 persons are infected with HIV and 25 to 50% of the HIV-infected population and subgroups respectively are estimated to be unaware of their HIV diagnosis. Perinatally-infected HIV-positive youth, aged 13-24 years, have survived unexpectedly into adulthood, have had unique HIV disclosure experiences and now face HIV disclosure issues of adulthood and perhaps parenthood. Despite new effective HIV therapies, no HIV prevention plan exists that has diminished the rate of new HIV infections. HIV stigma and lack of universal HIV reporting laws dissuade timely HIV disclosure. Missed HIV disclosure perpetuates HIV transmission and infection. Understanding the attitudes and beliefs of HIV disclosure among perinatally-infected HIV-positive youth and their caregivers may uncover reasons to HIV disclosure delays, avoidance and intentions. The Care to Share HIV Disclosure study was designed to identify the attitudes and beliefs of HIV disclosure among HIV-positve youth (aged 13-24 years), who were infected from birth and who knew their HIV diagnosis, along with their caregivers. Twenty-six participants (15 youth and 11 caregivers) completed the theory-based questionnaires of a 21-item multiple choice survey on HIV disclosure framed in the Theory of Reasoned Action and Theory of Planned Behavior and included an additional open-ended survey that applied the Transactional Model of Stress and Coping to address youth's and caregivers' HIV disclosure experiences. Youth were found to have a selective unfavorable HIV disclosure outcome when among referents of close friends. However youth did believe in HIV partner notification. For caregivers, it mattered who disclosed the HIV illness to the youth. HIV stigma was of concern based on the youths' tendency to believe in keeping HIV a secret and their caregivers' ambivalence to HIV secrecy. However, favorable HIV disclosure outcomes were identified for both youth and caregivers the potential for HIV disclosure: when seeking HIV knowledge, when around caregivers and close family and in situations of perceived controllability as when helping others learn about HIV. These findings unveil HIV disclosure attitudes and beliefs within this population and may reveal the attributes that may inhibit or promote HIV disclosure behaviors. HIV disclosure studies that address attitudes and beliefs among larger populations of youth and HIV-infected persons are necessary to identify effective individual, group and society approaches that would promote timely, responsible and meaningful HIV disclosure methods that promote a healthy identity and interrupt HIV transmission.^

A summative evaluation of a HIV/AIDS Early Childhood Care, Education and Development Teacher Training Workshop in Mongu, Zambia

Objective. To conduct a summative evaluation of an Early Childhood Care, Education and Development (ECCED) Teacher Training Workshop in Mongu, Zambia by assessing changes in knowledge, attitudes and intent to use the information. ^ Study design. A matched cohort survey design was used with additional qualitative data collected by structured observation of workshop sessions, daily facilitator and participant debriefs and participant interviews. ^ Results. Matching pre and post tests were completed by 27 individuals in addition to daily debriefs, structured workshop observation and participant interviews with 22% of the group. The participant population was predominantly female individuals aged 15-44 years old that had completed high school and additional post-secondary training, been teaching children aged 0 – 8 years for 2-5 years in the Western Province and received other HIV/AIDS and ECCED education. Pre-tests indicated a strong understanding of ECCED principles and misconceptions regarding HIV transmission, prevention and the disease's impact on early childhood development. The workshop was found to significantly increase the participants' knowledge of topics covered by the curriculum (paired t-test, N=27, p = 0.004, 95% CI 1.8, 8.6). Participants began with a more limited understanding of HIV/AIDS than ECCED, but the mean gain was much greater at 7.4 +/- 12.3 points. Significantly more participants believed at post-test that HIV/AIDS education should increase for future educators. The 77.8% of participants that increased their knowledge scores at post-test expressed significantly less fear of having a child with HIV/AIDS in the classroom (Independent Samples t-test, N= 27, p = 0.011). Overall participant fear decreased 15.5%. 92.6% and 88.9% of participants planned at post-test to respectively use and share the taught information in their daily professional lives and reported on innovative strategies to communicate with the community. ^ Conclusions. Teacher training workshops can significantly increase HIV/AIDS awareness and promote positive attitudes in educators working with children affected by HIV/AIDS. Using participant suggested teaching techniques such as poems and songs and translating the materials to the local language could assist future facilitators to both culturally and professionally relate to the workshop audience as well as increase participant capacity to share the information with the local community. ^

FACTORS INFLUENCING ACCESS TO HEALTH CARE AMONG MEXICAN AMERICAN ELDERLY IN TEXAS

Differential access to health care services has been observed among various groups in the United States. Minorities and low-income groups have been especially notable in their decreased access to regular providers of care. This is believed by many to account for some of the higher rates of morbidity and mortality and shorter life expectancies of these groups.^ This research delineated the factors associated with health care access for a particular subset of a minority group, the Mexican American elderly in Texas. Hospital admission and evidence of a regular source of medical care and dental care were chosen as the indicators of access to health care.^ This study analyzed survey interview data from the Texas Study on Aging, 1976. The 597 Mexican American elderly included in this study were representative of the non-institutionalized Mexican American elderly in Texas aged 55 or older.^ The results indicate that hospital admission is not a question of discretion and that common barriers to access, such as income, health insurance, and distance to the nearest facility, are not important in determining hospital admission. Mexican American elderly who need to be hospitalized, as indicated by self-perception of health and disability days, will be hospitalized.^ The results also indicate that having a regular source of medical care is influenced by many factors, some mutable and some immutable. The well-established and immutable factors of age, sex, and need were confirmed. However, the mutable factors such as area of residence and income were also found to have a significant influence. Mexican American elderly living in urban areas had significantly less access to a regular source of medical care as did those who were near the poverty level (as opposed to those who were well below the poverty level). In general, persons claiming a regular source of medical care were more likely to be women, persons who had many health needs, were near the poverty level, lived in urban areas, and had extensive social support systems.^ Persons claiming a regular source of dental care tended to be more advantaged. They had more education, a more extensive informal social support network, higher income, and were generally younger and in better health. They were also more likely to have private health insurance. . . . (Author's abstract exceeds stipulated maximum length. Discontinued here with permission of author.) UMI ^

Systematic review of current trends of cardiovascular disease (CVD) and association between health insurance coverage and CVD mortality among women aged 60--65 in Texas in 2000--2011

Cardiovascular disease (CVD) is highly preventable, yet it is a leading cause of death among women in Texas. The primary goals of this research were to examine past and current trends of CVD, as well as identify whether there is an association between the insurance coverage and mortality from CVD among women aged 60–65 in Texas between 2000 and 2011. ^ The systematic review of the research is based on the guidelines and recommendations set by the Centre for Reviews and Dissemination for conducting reviews in health care. Over 47 citations of peer-reviewed articles from Ovid MEDLINE and PubMed databases and five websites were identified, of which 7 studies met inclusion criteria for the first systematic review to examine the trends of CVD in Texas. Ten citations of peer-reviewed articles from Ovid MEDLINE and PubMed databases and five web sites were reviewed for the second systematic review (to study the association between insurance coverage and cardiovascular health among Texas women 60–64 years of age), of which 3 studies met inclusion criteria and were included in the research. The results of the study highlighted key gaps in the existing literature and important areas for the further research, as well as determined directions for future public health CVD prevention programs in Texas. ^ Based on the conducted research, the major determinants of premature mortality among women attributed to cardiovascular disease are based on individual level characteristics, more specifically sex, age, race/ethnicity, and education. The results indicate that African American and non-Hispanic white women are more likely to have higher CVD mortality rates than Hispanic women due to higher prevalence of cardiac risk factors. The data also shows higher levels of mortality from CVD in the southeastern United States, with Texas ranking as the third state with the highest prevalence of CVD among women. According to the Texas Department of State Health Services, there are approximately 56,000 deaths caused by CVD annually in Texas, which represents about one death every ten minutes. Coronary artery disease and stroke were the causes of 31.2 percent of all female deaths in Texas in 2009, meaning that approximately 68 women die from any form of cardiac disease in Texas each day. ^ The data of the reviewed studies indicate that women' lack of health insurance was significantly associated with a higher prevalence of cardiovascular disease. The uninsured women were more likely to be unaware of their risk factors and more likely to have undiagnosed diabetes—a co-morbidity factor of CVD. One of the studies also reports strong correlation between state rates of uninsured and lower rates of preventive care. Given these strong correlations, those who were chronically uninsured were at a higher risk of mortality than the insured, due to prolonged periods of time without basic access to preventive and medical care. ^ Suggested recommendations to decrease CVD mortality rates in Texas are consistent with the existing literature and include state policy development that addresses elimination of health disparities, consideration of potential benefits of universal health coverage by the legislative policymakers, and maintenance of solid partnerships between public health agencies and hospitals to educate on, diagnose, and treat CVD among the female population in Texas. ^

Comparison of clinical and economic outcomes between high-intensity care and hospice care for the end-of-life melanoma patients

The intensity of care for patients at the end-of-life is increasing in recent years. Publications have focused on intensity of care for many cancers, but none on melanoma patients. Substantial gaps exist in knowledge about intensive care and its alternative, hospice care, among the advanced melanoma patients at the end of life. End-of-life care may be used in quite different patterns and induce both intended and unintended clinical and economic consequences. We used the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked databases to identify patients aged 65 years or older with metastatic melanoma who died between 2000 and 2007. We evaluated trends and associations between sociodemographic and health services characteristics and the use of hospice care, chemotherapy, surgery, and radiation therapy and costs. Survival, end-of-life costs, and incremental cost-effectiveness ratio were evaluated using propensity score methods. Costs were analyzed from the perspective of Medicare in 2009 dollars. In the first journal Article we found increasing use of surgery for patients with metastatic melanoma from 13% in 2000 to 30% in 2007 (P=0.03 for trend), no significant fluctuation in use of chemotherapy (P=0.43) or radiation therapy (P=0.46). Older patients were less likely to receive radiation therapy or chemotherapy. The use of hospice care increased from 61% in 2000 to 79% in 2007 (P =0.07 for trend). Enrollment in short-term (1-3 days) hospice care use increased, while long-term hospice care (≥ 4 days) remained stable. Patients living in the SEER Northeast and South regions were less likely to undergo surgery. Patients enrolled in long-term hospice care used significantly less chemotherapy, surgery and radiation therapy. In the second journal article, of 611 patients identified for this study, 358 (59%) received no hospice care after their diagnosis, 168 (27%) received 1 to 3 days of hospice care, and 85 (14%) received 4 or more days of hospice care. The median survival time was 181 days for patients with no hospice care, 196 days for patients enrolled in hospice for 1 to 3 days, and 300 days for patients enrolled for 4 or more days (log-rank test, P < 0.001). The estimated hazard ratios (HR) between 4 or more days hospice use and survival were similar within the original cohort Cox proportional hazard model (HR, 0.62; 95% CI, 0.49-0.78, P < 0.0001) and the propensity score-matched model (HR, 0.61; 95% CI, 0.47-0.78, P = 0.0001). Patients with ≥ 4 days of hospice care incurred lower end-of-life costs than the other two groups ($14,298 versus $19,380 for the 1- to 3-days hospice care, and $24,351 for patients with no hospice care; p < 0.0001). In conclusion, Surgery and hospice care use increased over the years of this study while the use of chemotherapy and radiation therapy remained consistent for patients diagnosed with metastatic melanoma. Patients diagnosed with advanced melanoma who enrolled in ≥ 4 days of hospice care experienced longer survival than those who had 1-3 days of hospice or no hospice care, and this longer overall survival was accompanied by lower end-of-life costs.^