Urinary Liver-Type Fatty Acid Binding Protein, a Biomarker for Disease Progression, Dialysis and Overall Mortality in Chronic Kidney Disease.

Chronic kidney disease (CKD) is a major public health concern with an increasing proportion of sufferers progressing to renal replacement therapy (RRT). Early identification of those at risk of disease progression could be key in improving outcomes. We hypothesise that urinary liver-type fatty acid binding protein (uL-FABP) may be a suitable biomarker for CKD progression and can add value to currently established biomarkers such as the urinary protein-to-creatinine ratio (uPCR). A total of 583 participants with CKD 1-5 (not receiving renal replacement therapy) entered a 2 yr prospective longitudinal study. UPCR and uL-FABP were measured at baseline and CKD progression was defined as either (i) a decline in eGFR of >5 mL/min/1.73 m2 or an increase in serum creatinine by 10% at 1 yr; (ii) a decline in eGFR of >6 mL/min/1.73 m2 or an increase in serum creatinine by 20% at 2 yrs; or (iii) the initiation of RRT. A combined outcome of initiating RRT or death was also included. Approximately 40% of participants showed CKD progression. uL-FABP predicted CKD progression at both years 1 and 2 (OR 1.01, p < 0.01). Sensitivity and specificity were comparable to those of uPCR (AUC 0.623 v 0.706) and heat map analysis suggested that uL-FABP in the absence of significant proteinuria can predict an increase in serum creatinine of 10% at 1 yr and 20% at 2 yrs. The risk of the combined outcome of initiating RRT or death was 23% higher in those with high uL-FABP (p < 0.01) independent of uPCR. uL-FABP appears to be a highly sensitive and specific biomarker of CKD progression. The use of this biomarker could enhance the risk stratification of CKD and its progression and should be assessed further.

Reducing Public Health Risk During Disasters: Identifying Social Vulnerabilities.

All regions of the US experience disasters which result in a number of negative public health consequences. Some populations have higher levels of social vulnerability and, thus, are more likely to experience negative impacts of disasters including emotional distress, loss of property, illness, and death. To mitigate the impact of disasters on at-risk populations, emergency managers must be aware of the social vulnerabilities within their community. This paper describes a qualitative study which aimed to understand how emergency managers identify social vulnerabilities, also referred to as at-risk populations, in their populations and barriers and facilitators to current approaches. Findings suggest that although public health tools have been developed to aid emergency managers in identifying at-risk populations, they are not being used consistently. Emergency managers requested more information on the availability of tools as well as guidance on how to increase ability to identify at-risk populations.

Design and evaluation of a decision aid for inviting parents to participate in a fragile X newborn screening pilot study.

The major objectives of this project were to develop and evaluate a brochure to help parents make an informed decision about participation in a fragile X newborn screening study. We used an iterative development process that drew on principles of Informed Decision Making (IDM), stakeholder input, design expertise, and expert evaluation. A simulation study with 118 women examined response to the brochure. An independent review rated the brochure high on informational content, guidance, and values. Mothers took an average of 6.5 min to read it and scored an average of 91.1 % correct on a knowledge test. Most women rated the brochure as high quality and trustworthy. When asked to make a hypothetical decision about study participation, 61.9 % would agree to screening. Structural equation modeling showed that agreement to screening and decisional confidence were associated with perceived quality and trust in the brochure. Minority and white mothers did not differ in perceptions of quality or trust. We demonstrate the application of IDM in developing a study brochure. The brochure was highly rated by experts and consumers, met high standards for IDM, and achieved stated goals in a simulation study. The IDM provides a model for consent in research disclosing complicated genetic information of uncertain value.

Women's Knowledge, Views, and Experiences Regarding Alcohol Use and Pregnancy: Opportunities to Improve Health Messages.

BACKGROUND: Women continue to drink alcohol during pregnancy despite Surgeon Generals' Advisory statements and educational efforts about the dangers. PURPOSE: This focus group research study examined women's knowledge and beliefs about alcohol consumption and its risks during pregnancy along with related perceptions of social influences and information sources in order to inform future messaging. METHODS: The study included 20 focus groups of 149 reproductive-age women segmented by age, pregnancy status, and race/ethnicity. RESULTS AND DISCUSSION: Women acknowledged the risks and consequences of drinking alcohol during pregnancy, but many held common misconceptions. Some women continued to drink during pregnancy or expressed intent to continue drinking until pregnancy confirmation. Findings indicated that women's partners, families, and friends influence women's decisions to drink or abstain from alcohol. In addition, health care providers and the Internet act as important sources of health information for women but sometimes do not adequately educate them about the risks of alcohol use and pregnancy. TRANSLATION TO HEALTH EDUCATION PRACTICE: Considerations for messaging and educational materials related to alcohol use and pregnancy include providing clear and consistent messaging (especially from health professionals), focusing on social support strategies, and utilizing electronic media. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Women's knowledge, attitudes, and beliefs about Down syndrome: a qualitative research study.

Women who are or may become pregnant need up-to-date information about Down syndrome (DS). Asking women about their knowledge, opinions, resources, and information needs on the topic of DS is an important precursor to develop effective strategies for education. We conducted 24 focus groups (N = 111) in two US cities with women who were recently pregnant (who had a child ≤ 3 years old without DS) and women who planned to have a child in the next year. Groups were further segmented by age and race-ethnicity. Questions explored women's knowledge, attitudes, and beliefs about DS; resources used to obtain information about health and DS; and information needs on the topic of DS. All participants reported having some knowledge of DS: facial features, chromosomal condition, and maternal age as a risk factor. Many participants had misconceptions, including the life expectancy for persons with DS, other maternal and paternal risk factors, and the idea that having a child with DS would disrupt their lives. Participants requested stories to help illustrate what life is like for families with DS. Many Hispanic and African American participants said they only saw or knew of Caucasian persons with DS and requested culturally diverse educational materials about DS. Participants said they would seek information on DS from the Internet and from their health care providers. Results suggest that women need tailored materials that contain clinical information about DS as well as information about living with a child with DS. Published 2012. This article is a U.S. Government work and is in the public domain in the USA.

Homograph norms: an alternative approach to determining meaning dominance.

In the present study, we provide a new technique for the collection of homograph norms that reduces subjectivity in the determination of meaning dominance by allowing participants rather than experimenters to indicate to which meaning or meanings the associates were related. To evaluate the effectiveness of this new technique, a subset of homograph norms were used in three separate experiments, demonstrating that (1) when presented with additional meaning categories, participants classified the associates consistently into the primary and secondary meaning categories; (2) overall, the participants were most familiar with primary meanings, followed by secondary, tertiary, and quaternary meanings; and (3) the meaning categories provided to the participants during norms collection were appropriate, since the two meanings provided for each homograph by the participants were consistent with the original data. Finally, in a fourth experiment, we compared the results of this new technique with a parallel set collected in Australia. The high degree of similarity in the results provides validity for this procedure. The homograph norms discussed in this article may be downloaded from http://brm.psychonomic-journals.org/content/supplemental.

Low-income and minority patient satisfaction with visits to emergency departments and physician offices for dental problems.

OBJECTIVES: Individuals lacking access to dentists may use hospital emergency departments (EDs) or physicians (MDs) for the management of their dental problems. This study examined visits by minority and low-income individuals to physicians and hospital emergency departments for the treatment of dental problems with the goal of exploring the nature of treatment provided and patient satisfaction with the care received. METHODS: Eight focus group sessions were conducted with 53 participants drawn from low-income White, Black, and Hispanic adults who had experienced a dental problem and who had sought MD/ED care at least once during the previous 12 months. RESULTS: Toothache pain or more generalized jaw/face pain was the most frequent oral problem resulting in MD/ED visits. Pain severity was the principle reason for seeking care from MDs/EDs, with financial barriers most often mentioned as the reason for not seeking care from dentists. Expectations of MD/ED visits were generally consistent with care received; most participants limited their expectations to the provision of antibiotics or pain medication. Nearly all of the participants thought they would eventually need to see a dentist for resolution of their dental problem. CONCLUSIONS: Poor/minority individuals seek relief from oral pain through MDs/ EDs while recognizing that such care is not definitive.

Coping with toothache pain: a qualitative study of low-income persons and minorities.

OBJECTIVES: This study examined the behavioral impact of toothache pain as well as self-care strategies for pain relief among minority and low-income individuals. METHODS: Eight focus group sessions were conducted with 66 participants drawn from low-income non-Hispanic White, non-Hispanic Black, and Hispanic adults over the age of 20 who had experienced a toothache during the previous 12-month period and who had utilized self-care or care from a nondentist. RESULTS: Toothache pain was described as intense, throbbing, miserable, or unbearable. Focus group participants indicated that toothache pain affected their ability to perform normal activities, such as their job, housework, social activities, sleeping, talking, and eating, as well as making them depressed and affecting their social interactions. Numerous prescription and nonprescription medications as well as home remedies and self-care strategies were used for pain relief, although these were generally of limited and uncertain benefit. While receiving care at a dental office was the most preferable option for care, most participants reported multiple barriers, including the cost of dental care that resulted in long delays in seeking dental care. The main reason for eventually seeking dental care was the severity of the pain. CONCLUSIONS: Although removing financial barriers alone may not lead to preventive dental visits, it would facilitate more timely visits to dentists to treat toothache pain.

Activity situations on an Alzheimer's disease special care unit and resident environmental interactions, time use, and affect.

Routine activity situations on an Alzheimer's disease (AD) special care unit were examined with respect to residents' social and physical environmental interactions, time use, and apparent affect. Using a computer-assisted observational tool, observers recorded prevailing activity situations and corresponding behaviors and affects of seven residents every 10 minutes, from 8:00 AM to 8:00 PM, across four days. Although meals/snacks and some activity groups were positively associated with use of physical objects and engagement in activities, residents were predominantly environmentally disengaged, inactive, or without positive affects during the most prevalent activity situations of background media, downtime, and television. Findings suggest that routine activity situations may act as potent environmental influences on the quality of life (QOL) of people with AD and mediate the effectiveness of other environmental interventions undertaken on their behalf.

Activating chronic kidney disease patients and family members through the Internet to promote integration of care.

PURPOSE: To describe the potential role of the Internet as a vehicle for improving integration of care through activating chronic kidney disease patients and their family members. Also, to describe how that potential is being developed through a website sponsored by the Medicare program in the United States. BACKGROUND: The Internet is expanding at a rapid rate, and health-related websites are one of its most popular features. Efforts to promote integration of care have focused mainly on providers up to now, and more emphasis is needed on the potential roles of patients. Chronically ill patients have particular needs for improved education about their conditions and enhanced involvement in care planning and treatment decisions. Medicare developed the Dialysis Facility Compare website to serve those goals for people with chronic kidney disease. METHODS: We conducted qualitative research with 140 chronic kidney disease patients and family members, and 130 renal care professionals to evaluate and improve the Dialysis Facility Compare website. A series of 19 focus groups, 13 triads (small focus groups), and 56 individual interviews were conducted in four regions of the United States and by telephone. RESULTS: We found that the Dialysis Facility Compare website has the potential to improve integration of care for people with chronic kidney disease in at least three ways. First: by expanding the roles of patients as members of the multi-disciplinary team of caregivers treating their disease. Second: through better integration of the informal care provided in the home and community with the formal care provided by health professionals. Third: by improving coordination of between care provided in the pre-dialysis and dialysis phases of the disease. DISCUSSION: We developed recommendations for revising and enhancing the Dialysis Facility Compare website in a number of ways to better promote patient activation and integration of care. The unique features of the Internet, such as its different dimensions of interactivity, and applications of behavioural theories for website design should also be further explored.