<p> The present study utilized the microanalysis techniques for grounded theory described by Strauss and Corbin (1998) to better understand the lived experience of having rheumatoid arthritis (RA) as a young adult woman. The sample consisted of eight women between the ages of 25-36, each of which participated in a 60-90 minute telephone interview that explored how they feel, think, and behave in terms of their RA. A theory emerged from the data that reflected the process of moving from diagnosis to acceptance for the participants. This process was described as being akin to a roller coaster because of the myriad of ups and downs associated with the RA experience. The findings from this study may help to inform the understanding of how young adults experience life in terms of their RA and, therefore, has potentially positive implications for other young adults with RA as well as their health care professionals, family, and friends.</p>

<p> Using Heideggerian interpretive phenomenology, this study illuminates the lived experience of an adapted dance program for individuals with Down syndrome and their family members. The overall pattern from both dancers and family members was adapted dance: connecting mind, body and soul. The primary theme from dancer interpretations was expressing a mosaic of positive experiences, and the primary theme from family member interpretations was experiencing pride in their loved ones. The dance program provided dancers an opportunity to express their authentic self while experiencing moments of full embodiment in the connection of their mind, body and soul. While dancers experienced the connection of mind-body-soul, family members recognized the importance of this connection in their loved one. This research is instrumental in advocating for opportunities for individuals with Down syndrome to experience dance as a social, physical and intellectual activity that results in learning and increasing social interactions. The research findings from this study can support future initiatives for dance programs that may influence a population that has limited access to physical activity and dance. The study's teaching strategies, dance activities, class procedures and sequences, and feedback techniques can be used by other professionals who teach individuals with intellectual disabilities.</p>

<p> Children with autism are at an increased risk of experiencing coping challenges in healthcare environments. Since Child Life Specialists [CLSs] seek to maximize development and coping in hospitalized children, their understandings of autism are key to intervention. To better understand CLSs' perceptions of autism, this researcher surveyed 126 CLSs using a combined qualitative and quantitative questionnaire. CLSs were expected to express both strengths-based and deficit-based perceptions of autism, with more strengths-based perceptions from CLSs with education or training in disability or access to a special educator. Overall, participants expressed more strengths-based sentiments. No differences were found among CLSs based on education or access to a special educator. However, having a relative with autism was associated with more positive feelings about autism. Additionally, participants drew from child life theory; education, training, and experience; and their understandings of autism to inform their interventions with this population. This research adds to the current literature on perceptions of disability among healthcare professionals and opens the door for future research on how those perceptions are established.</p>

<p> Methods to extract vessel networks in medical images have been in high demand for its applications to health risk predictions. For example, vessel enhancement of retinal images has shown promises in diagnosing diabetes. Within the existing literature, multiscale vessel enhancement stands out as one of the best for its accuracy, speed, and simplicity. But like many vessel extraction techniques, the efficacy of the method is greatly hindered in the presence of noise, lighting variations, and decreased resolution. This deficiency is presents itself in retinal images and are particularly pronounced in digital photographs of human placenta.</p><p> Retinal images have a been popular data set of testing vessel extraction methods because of its simplicity in anatomical structure yet high hopes in diagnosing conditions such as diabetic retinopathy and glaucoma. Thus, the thesis will focus on the application of vessel extraction methods on retinal images. Specifically, we focus on the DRIVE and STARE database.</p><p> Also, recent placental pathology evidence has contributed to current understanding of causes of low birth weight and preterm birth, each has been linked to increased risk of later neurodevelopmental disorders. Among various factors that cause such disorders, the vessel network on the placenta has been hypothesized to offer the most clue in bridging that connection. Herein lies the most essential step of the blood vessel extraction, which has only been done manually through a laborious process.</p><p> Motivated by its ability to handle curvilinear structures, we propose the use of directional filter banks to further enhance the results obtained from the multiscale method. Validating experiments will be performed on a private database that is made available by the Placental Analytics, LLC.</p><p> It will be shown that for retinal images, the directional filter bank approach significantly improves the performance over the well-known multiscale vessel enhancement method. However, the directional filter bank approach are comparable to multiscale vessel enhancement on placentas.</p>

<p> The current study examined how parental underestimations of child&rsquo;s weight status, parental worry, and the Theory of Planned Behavior variables (attitudes, subjective norms, and perceived behavioral control) predict intentions to adhere to the American Academy of Pediatrics&rsquo; (AAP) recommendations of four childhood health behaviors. These behaviors include: 1) eating five fruits and/or vegetables per day; 2) spending two hours or less on screen time (television, computer, and video games) per day; 3) engaging in at least one hour of physical activity per day; and 4) limiting (having zero) sugarsweetened beverages. Parents (N = 78) of overweight and obese children, ages six to 13 years old, were recruited from pediatric medical clinics and participated in an online study, where they were exposed to these AAP behavioral recommendations for children and completed online measures. Attitudes predicted of behavioral intentions for all recommendations except fruit and vegetable consumption. Subjective norms marginally predicted behavioral intentions for physical activity and sugar-sweetened beverage consumption. Perceived behavioral control predicted behavioral intentions for the four recommendations. Parental worry predicted behavioral intentions for fruit and vegetable consumption. Additional theoretical and practical implications of this research are also discussed.</p>

<p> Public health reporting is an important source of information for public health investigation and surveillance, which are necessary for the prevention and control of disease. There are two important problems with the current public health reporting process in the United States: (a) the reporting specifications are unstructured and are communicated with reporting facilities using nonstandard public health department Web sites and (b) most reporting facilities transmit reports to public health entities using manual and paper-based processes. Our research focuses on the development and evaluation of new strategies to improve the public health reporting process by addressing these problems. </p><p> To improve the communication of public health reporting specifications by public health authorities, we: (a) examined the business process of a laboratory complying with the reporting requirements, (b) evaluated public health department Websites to understand the problems faced by reporting facilities while accessing the reporting specifications, (c) identified the content requirements of a knowledge management system for public health reporting specifications, (d) designed the representation of the public health reporting specifications, and (e) evaluated the content and design using a prototype web-based query system for public health reporting specifications. </p><p> To improve the transmission of case reports from healthcare facilities to public health entities, we: (a) described public health workflow associated with the management of case reports, (b) identified the content of a case report to meet the needs of public health authorities, (c) modeled the case report using Health Level Seven (HL7) v2.5.1, and (d) evaluated the electronic case reports by comparing the timeliness, completeness of information content, and the completeness of the electronic reporting process with the paper-based reporting processes.</p><p> We demonstrated a model for public health reporting specifications using a prototype web-based query system. The evaluation conducted with users from laboratories, healthcare facilities, and public health entities showed that the proposed model met most of the users' needs and requirements. We also identified variation in the reporting specifications, some of which could be standardized to improve reporting compliance.</p><p> We implemented HL7 v2.5.1 case reports from Intermountain Healthcare hospitals to the Utah Department of Health. The electronic reports transmitted from the Intermountain hospitals were more timely (median delay: 2 days) than the paper reports sent from other clinical facilities (median delay: 3.5 days) but less timely than the paper reports from Intermountain laboratories (median: 1 day). However, the evaluation of the completeness of data elements needed for public health triage prior to investigation showed that electronic case reports from Intermountain hospitals included more complete information than paper reports from Intermountain laboratories. Even though the paper reports from Intermountain laboratories were more timely, the incomplete reports may delay investigation. There are informatics opportunities and public health needs to improve both electronic laboratory reporting and electronic case reporting.</p>

Persons with rare diseases are frequently unable to obtain suitable pharmacologic treatment. Pharmaceutical companies are not apt to develop compounds for which there is a very small commercial market. Further, drugs for rare diseases are scrutinized by the Food and Drug Administration in the same manner as those for more common diseases--a contingency which, due to the enormous cost of drug research, further discourages profit-driven pharmaceutical companies from developing compounds for rare diseases. John Rawls and Paul Ramsey offer insight into the situation and remedy of the plight of the rare disease patient. Rawls, with his notion of the basic structure of society, offers a framework in which justice dictates that the background institutions of this basic structure be constantly criticized and changed. Ramsey's thought serves the issue with his notion of agape or covenant-care--a concept which calls for the treatment of patients as suffering individuals.

The ethical issues that are associated with interprofessional relationships in health care affect the care that patients receive in an institutional setting. There are many components of difference that affect relationships, but this work focuses on sexual difference and how it is revealed in the discourse of health care. Since the ethical obligations of health care providers historically have been derived from the roles of those professionals, the patient and provider relationship is described to establish the obligations of nurses, physical therapists, and physicians to patients. Because health care principles traditionally have been narrowly interpreted and applied, as well as limited in choosing ethical cases for analysis, the traditional ethical frameworks of principlism and casuistry have been insufficient in addressing the ethical concerns that arise from interprofessional relationships. A feminine ethic of care is also inadequate in addressing these concerns because it is not sensitive to sexual difference and because it involves the possibility of promoting self-sacrifice. Luce Irigaray uses a technique of mimesis to expose and undermine sexual indifference in several western texts to explain how woman's voice has been overlooked in a culture based on masculine discourse. Her phenomenological interpretation of woman's body as being fluid, multiple, and intermediate is associated with those health care professions that are grounded in maternal nurturing and touching. These qualities are also revealed in the gendered discourse that permeates health care. Using Irigaray's work on feminine imaginary and gendered discourse, health care ethical issues can be analyzed at a deeper level than via principlism, casuistry, or care. By recognizing how the gendered nature of health care discourse prevents the female voice from contributing to the decision-making process, new and creative possibilities for approaching ethical issues can be developed to provide the patient with care based on a broader interpretation of the issues. A case study based on a patient at the end-of-life is used to illustrate how the recognition of the role of sexual difference in ethical analysis can affect how decisions about patient care are made.

<p> <b>Background:</b> Commonly used response scales in patient-reported outcome (PRO) measures include the visual analogue scale, 11-point numeric rating scale, 5-point numeric rating scale, 5-point verbal rating scale, and 5-point verbal-numeric rating scale. Although prior studies have explored the interpretation of response scale labels and compared scores resulting from the response scale, many questions remain.</p><p> <b>Purpose:</b> To identify sets of verbal descriptors interpreted with the least variation and to explore whether the response scales provide interval level data and whether the scales are interchangeable.</p><p> <b>Methods:</b> Subject recruitment and screening was through an online drug-drug interaction service (MediGuard.org). Via an online survey platform, subjects used a scale (0 = lowest possible and 10=highest possible) to assign interpretation scores to verbal descriptors. Repeated measures analysis of variance informed the test interval data between scores. Subjects also completed repeated administrations of four symptom-specific item stems with different response scales.</p><p> Ordinal regression informed the analysis of scores assigned to verbal descriptors, comparison of probabilities of responding in given categories across scales, and prediction of response category on one scale conditional on observed response on another scale. Cut-points informed tests for interval level data.</p><p> <b>Results:</b> The sample (n=350) comprised 223 females and 127 males with a mean (SD) age of 56.9 (12.1) years. Number of health conditions per subject ranged from 1 to 12 (median = 5). Age, sex, level of education, and number of health conditions were associated with the interpretation of verbal descriptors. Scores assigned to "poor," "fair," "good," "very good," "excellent," "somewhat," "sometimes," and "quite a bit," had the largest variation. The probability of responding in the same categories on the different response scales was significantly different across scales before and after collapsing categories. No scale yielded interval level data. The 11-NRS data tended more towards interval level than the data from other scales.</p><p> <b>Conclusions:</b> Using different response scales with verbal descriptors in non-randomized studies may introduce bias. Differential item functioning and subgroup analyses should be investigated in the development and use of these response scales. The scales are not interchangeable. Compared with other scales the 11-NRS produced data approaching interval level. Collapsing categories entails significant probabilities of misclassification.</p>

A problem often encountered in epidemiology is the evaluation of the validity of a questionnaire administered to subjects. This is usually performed with the help of the intraclass correlation coefficient (ICC). The ICC, however, has several drawbacks. / This thesis addresses questions on the use of Generalized Procrustes analysis (GPA) to estimate interrater reliability in epidemiology. GPA is one of the family of methods that are concerned with the analysis of data arising from several subjects. It is a powerful multivariate statistical technique developed in the framework of sensory evaluation to primarily assess interjudge reliability and furthermore to measure the effect of treatments, usually food products in a sensory study. Because of the empirical nature of GPA, informal graphical methods that allow multidimensional spaces to be explored to reveal structure in the data are commonly used, hence facilitating the interpretation of results. / Therefore, it is of interest to investigate how GPA could be adapted to epidemiology, more specifically, in the development of scales and in the evaluation of interrater reliability and to evaluate the similarities and differences compared to the ICC.