Relationships among epilepsy self-management, health outcomes, and socioeconomic status

The purpose of this study was to investigate the association between epilepsy self-management and disease control and socio-economic status. Study participants were adult patients at two epilepsy specialty clinics in Houston, Texas that serve demographically and socioeconomically diverse populations. Self-management behaviors- medication, information, safety, seizure, and lifestyle management were tested against emergency room visits, hospitalizations, and seizure occurrence. Overall self-management score was associated with a greater likelihood of hospitalizations over a prior twelve month time frame, but not for three months, and was not associated with seizure occurrence or emergency room visits, at all. Scores on specific self-management behaviors varied in their relationships to the different disease control indicators, over time. Contrary to expectations based on the findings of previous research, higher information management scores were associated with greater likelihood of emergency room visits and hospitalizations, over the study's twelve months. Higher lifestyle management scores were associated with lower likelihood of any emergency room visits, over the preceding twelve months and emergency room visits for the last three months. The positive associations between overall self-management scores and information management behaviors and disease control are contrary to published research. These findings may indicate that those with worse disease control in a prior period employ stronger self-management efforts to better control their epilepsy. Further research is needed to investigate this hypothesis.^

A PROCESS FOR ACHIEVING COMPARABLE DATA FROM HETEROGENEOUS DATABASES

The current state of health and biomedicine includes an enormity of heterogeneous data ‘silos’, collected for different purposes and represented differently, that are presently impossible to share or analyze in toto. The greatest challenge for large-scale and meaningful analyses of health-related data is to achieve a uniform data representation for data extracted from heterogeneous source representations. Based upon an analysis and categorization of heterogeneities, a process for achieving comparable data content by using a uniform terminological representation is developed. This process addresses the types of representational heterogeneities that commonly arise in healthcare data integration problems. Specifically, this process uses a reference terminology, and associated "maps" to transform heterogeneous data to a standard representation for comparability and secondary use. The capture of quality and precision of the “maps” between local terms and reference terminology concepts enhances the meaning of the aggregated data, empowering end users with better-informed queries for subsequent analyses. A data integration case study in the domain of pediatric asthma illustrates the development and use of a reference terminology for creating comparable data from heterogeneous source representations. The contribution of this research is a generalized process for the integration of data from heterogeneous source representations, and this process can be applied and extended to other problems where heterogeneous data needs to be merged.

Nutritional factors and the risk of cervical dysplasia

A case comparison study of 159 women was conducted to test the hypotheses that women with cervical dysplasia had a higher prevalence of low dietary intakes of carotenoids, vitamin C, and folacin than women without cervical dysplasia, and that there would be no association between the risk of having cervical dysplasia and dietary intake of retinol. Information regarding the prevalence of known risk factors for cervical dysplasia, early age at first intercourse, multiple sexual partners, early age at first pregnancy, history of having sexually transmitted diseases, cigarette smoking, and sociodemographic data was collected. Dietary intake was estimated using a 97 item quantified food frequency questionnaire designed to obtain information on consumption of all sources of retinol, carotenoids, vitamin C and folacin. Univariate analyses showed that the presence of cervical dysplasia was positively and significantly associated with all the risk factors. In analyses of the association of the dietary variables with cervical dysplasia, information on carotenoid intake was calculated in two ways, as total carotenoid intake and as intake of lycopene and other carotenoids. While there appeared to be an inverse association between the presence of cervical dysplasia and intakes of lycopene and folacin, lower intake of retinol, total carotenoids, other carotenoids (non-lycopene carotenoids) or vitamin C did not increase the risk of having cervical dysplasia. Multivariable analyses showed that, in comparison to women who usually consume 105 RE/day of lycopene, the odds of having cervical dysplasia for women who consume 31-104 RE/day and 30 RE/day or less were 1.31 and 1.66 respectively. The odds of having cervical dysplasia in women who consume 199-396 mcg/day and 198 mcg/day or less of folacin were 2.66 and 2.97 respectively as compared to women who usually consume 397 mcg/day or more. These results suggest the importance of re-evaluating existing dietary data and planning in future studies to evaluate the associations of lycopene and folacin with cervical cancer, as well as to extend these results to other diet/cancer investigations. ^

HIV disclosure decisions and social support among African-American women in Houston, Texas

African Americans make up 12.3% of the population but account for over half of the new HIV cases and 39% of the AIDS cases in 2003 (Centers for Disease Control and Prevention [CDC], 2003). African American women in particular accounted for 64% of these cases of HIV and 60% of the AIDS cases (Leigh & Huff, 2003). This study contributed to the knowledge about the disclosure process of women living with HIV/AIDS by documenting the relationship between social support and the disclosure process in the African American HIV/AIDS population.^ The study aims were to: (1) discuss the participants' self concept of support; (2) describe the common characteristics of the disclosure process; and (3) evaluate the common characteristics of support sought in a potential disclosure source. The ethnographic qualitative methodology was utilized to elicit participant narratives of HIV disclosure and social support. The researcher utilized a key informant interview methodology building on existing social and organizational relationships (Krueger, 1994) to gain access to the population. ^ Semi-structured interviews are a widely used and accepted qualitative research method for use with hard to reach populations and sensitive topics. Ten participants completed a 45 to 60 minute, one on one semi-structured interview covering social support and disclosure variables. Inclusion and exclusion criteria included: (1) self identified as a person living with HIV/AIDS; (2) African American); (3) female; (4) age 18-64 years old, (5) residence in Houston or surrounding counties.^ Themes generated from the interviews were (1) nondisclosure, (2) experiences with disclosure, (3) timing, (4) disclosure sources, and (5) coping. The themes suggest African American women living with HIV/AIDS come from different lifestyles but share similar experiences. Women utilize different strategies such as deciphering whom to trust and determining how much information to divulge in order to protect themselves or others.^ Although the sample group was small for this study, the results inform us about the various experiences each woman goes through as it relates to social support and disclosure and that each woman has to customize her response to the type of support she is receiving and her personal attitude about her disease.^

The movement toward patient safety: State action related to reporting and disclosure of healthcare-associated infections

Increasing attention has been given to the problem of medical errors over the past decade. Included within that focused attention has been a strong interest in reducing the occurrence of healthcare-associated infections (HAIs). Acting concurrently with federal initiatives, the majority of U.S. states have statutorily required reporting and public disclosure of HAI data. Although the occurrence of these state statutory enactments and other state initiatives represent a recognition of the strong concern pertaining to HAIs, vast differences in each state’s HAI reporting and public disclosure requirements creates a varied and unequal response to what has become a national problem.^ The purpose of this research was to explore the variations in state HAI legal requirements and other state mandates. State actions, including statutory enactments, regulations, and other initiatives related to state reporting and public disclosure mechanisms were compared, discussed, and analyzed in an effort to illustrate the impact of the lack of uniformity as a public health concern.^ The HAI statutes, administrative requirements, and other mandates of each state and two U.S. territories were reviewed to answer the following seven research questions: How far has the state progressed in its HAI initiative? If the state has a HAI reporting requirement, is it mandatory or voluntary? What healthcare entities are subject to the reporting requirements? What data collection system is utilized? What measures are required to be reported? What is the public disclosure mechanism? How is the underlying reported information protected from public disclosure or other legal release?^ Secondary publicly available data, including state statutes, administrative rules, and other initiatives, were utilized to examine the current HAI-related legislative and administrative activity of the study subjects. The information was reviewed and analyzed to determine variations in HAI reporting and public disclosure laws. Particular attention was given to the seven key research questions.^ The research revealed that considerable progress has been achieved in state HAI initiatives since 2004. Despite this progress, however, when reviewing the state laws and HAI programs comparatively, considerable variations were found to exist with regards to the type of reporting requirements, healthcare facilities subject to the reporting laws, data collection systems utilized, reportable measures, public disclosure requirements, and confidentiality and privilege provisions. The wide variations in state statutes, administrative rules, and other agency directives create a fragmented and inconsistent approach to addressing the nationwide occurrence of HAIs in the U.S. healthcare system. ^

Improving disclosure of medical errors: Including patients and family members in the disclosure process

Over the last decade, adverse events and medical errors have become a main focus of interest for the standards of quality and safety in the U.S. healthcare system (Weinstein & Henderson, 2009). Particularly when a medical error occurs, the disclosure of medical errors and its practices have become a focal point of the healthcare process. Patients and family members who have experienced a medical error might be able to provide knowledge and insight on how to improve the disclose process. However, patient and family member are not typically involved in the disclosure process, thus their experiences go unnoticed. ^ The purpose of this research was to explore how best to include patients and family members in the disclosure process regarding a medical error. The research consisted of 28 qualitative interviews from three stakeholder groups: Hospital Administrators, Clinical Service Providers, and Patients and Family Members. They were asked for their ideas and suggestions on how best to include patients and family members in the disclosure process. Framework Analysis was used to analyze this data and find prevalent themes based on the primary research question. A secondary aim was to index categories created based on the interviews that were collected. Data was used from the Texas Disclosure and Compensation Study with Dr. Eric Thomas as the Principal Investigator. Full acknowledgement of access to this data is given to Dr. Thomas. ^ The themes from the research revealed that each stakeholder group was interested and open to including patients and family members in the disclosure process and that the disclosure process should not be a "one-way" avenue. The themes gave many suggestions regarding how to best include patients and family members in the disclosure process of a medical error. Secondary aims revealed several ways to assess the ideas and suggestion given by the stakeholders. Overall, acceptability of getting the perspective of patients and family members was the most common theme. Comparison of each stakeholder group revealed that including patients and family members would be beneficial to improving hospital disclosure practices. ^ Conclusions included a list of recommendations and measureable appropriate strategies that could provide hospital with key stakeholders insights on how to improve their disclosure process. Sharing patients and family members experience with healthcare providers can encourage a shift in culture where patients are valued and active in participating in hospital practices. To my knowledge, this research is the very first of its kind and moves the disclosure process conversation forward in a patient-family member inclusion direction that will assist in improving disclosure practices. Future research should implement and evaluate the success of the various inclusion strategies.^