Perceived Health Status, Health Values and Health Goals as Influences on Individual Pursuit of DTC Genome Testing: Implications for Healthcare of Ill & Healthy

This dissertation examines an individual’s perceived health status, and health values, as influences on self-initiated health action, specifically the pursuit of Direct-to-consumer (DTC) genome testing. Motivation for this independent health action may also have implications for other individual health behaviors, including the potential for positive changes that are lasting rather than temporary. Health Capability, the conceptual framework, supports individual health values and goals, ability to access valued healthcare services and includes measures of health status. However, Health Capability lacks an operationalized mapping of its major concepts. This dissertation proposes and evaluates an original concept mapping and relationships. An overview of this dissertation and components is presented in Chapter one. Chapter two addresses the genomics and healthcare landscape related to independent individual pursuit of Direct-to-consumer (DTC) genome testing. The Health Capability framework is initially presented in this chapter, together with the research hypotheses, targeted literature review of key concepts and the proposed concept mapping with relationships. Chapter three describes the Health Capability conceptual framework, its adaptation and extension for the dissertation and its potential for use in health promotion and prevention research. A systematic review of the literature on perceived health status is discussed in chapter four, as well as a targeted review of approaches to concept measurement and most commonly used instruments. Chapter Five presents the dissertation study. This research involves 1455 self-initiated Direct-to-consumer (DTC) genome testing users who represent a naturally occurring phenomenon and provide a unique population to study the impact of an individual’s subjective perceived health status, personal health values and health goals. Participants completed surveys as part of the Impact of Personal Genomics (PGen) study. These participants were classified into four mutually exclusive health status groups based on individual perception of health and a healthcare system perspective of health status (existence of a medical diagnosis). These groups were analyzed for the following: 1) discrepancies in health status, 2) differences in reasons for genome testing, perceived risk and health values, and 3) potential relationships among variables. Results confirmed discrepancies between individual and biomedical health status. One group may represent the “worried well”. Interest in health information was high (98–99%) across all groups, as was health value of genome test results. Two items distinguished all groups (interest in pharmacogenomics information and learning risk for other diseases (p \u3c .001). When groups differed, perceived rather than biomedical health status was often involved, yet both factors demonstrated influences (variable dependent). Risk perception was moderately correlated (.301) with health status group, yet clearly does not equate with perceived health. Persons with medical diagnoses and self-rated not good health scored highest for items relating to immediate personal health and for family. Study findings are consistent with individual perceived health status and health values as significant factors influencing self-initiated health action (DTC genome testing). Chapter six further interprets research results as they relate to the hypotheses and to future research plans. Implications of the study results for revision and extension of the Health Capability concept mapping and framework are also discussed. These include: 1) supporting health status and values as principle concepts; 2) supporting addition of a measure of individual (subjective) perceived health status; 3) representing resources outside the healthcare system; and, 4) exploring the possibility of a personal need or value, as a “trigger” to action. These are areas of planned further research relevant to personalized healthcare, effective clinical practice, a collaborative healthcare model and meaningful policy development

Lessons from the Past: Metabolic Bone Disease in Historical Captive Primates

Primate welfare in captivity has significantly improved over the last century as a result of the advances made in providing an adequate diet and environment. The skeletal collections of museums provide evidence of this shift in captive care, because metabolic disease caused by dietary deficiency or inappropriate surroundings can cause deformation to the hard tissues. The Royal College of Surgeons of England (RCS) holds a collection of 1507 nonhuman primate skulls in its Odontological Collection, the majority donated before the mid-20th century from various sources. We observed a recurring gross pathology in 51 of these skulls, noted in museum records as captive animals. In all cases, general bone thickening with decreased bone density is the main feature and involves primarily the bones of the maxillofacial region and mandible. We performed computed tomography scanning on a subsample of these skulls to investigate these pathological features further. We compared the RCS historical collections and a more recent captive primate collection at the National Museum of Scotland. The findings suggest that a metabolic bone disease is the causative agent, with osteomalacia the likely diagnosis. Osteomalacia typically occurs due to malnutrition and/or insufficient ultraviolet light exposure and in this case reflects the inadequacy of zoo primate management during the late 19th and early 20th centuries. Developments have since been made in captive animal welfare as a result of improvements in nutrition and environment. Metabolic bone disease in primate captivity can be regarded as a lesson from the past

Finding a Place for Video Games on your Campus

Video games are an emerging technology topic in libraries, relevant to instruction, collections, research, and outreach. This session will cover starting a conversation about gaming in libraries on your campus. We will discuss the creation of a Gaming Community of Practice at the University of Minnesota Libraries, and share recommendations for identifying opportunities to integrate gaming and game-based learning on your campus

3D Scanning in the Library!

Experimenting with new uses of technologies can be a great way to engage library users. We will teach workshop participants how to use an Xbox Kinect, the motion sensing device that allows for gesture control, and Skanect software to create 3D scans of participants. Users can manipulate their scan files in any way they choose, including creating a 3D print of it. In demonstrating how to use this technology, we will show how the activity can be done using a basic swivel chair to make “busts” of participants or, for the especially adventurous, building your own motorized rotating platform for full body scans. Finally, we will share our workflow that we applied to multiple events, including a city-wide art festival and multiple Libraries’ events. This activity allows participants to explore gaming technology in interactive and new ways and hopefully inspire participants to try this at their own institutions

Strategic Planning for Research Use in Nursing Practice

Background/Objective: To prepare for a culture change to integrate research utilization into daily nursing practice, the authors conducted a descriptive survey of all registered nurses (RNs) in an integrated healthcare delivery system. The purposes of this study were to assess RNs\u27 knowledge, attitudes, and practices (KAP) of nursing research activities, assess factors that support a research environment, and determine facilitating and challenging factors related to conducting regional nursing research. Methods: A 33-item survey based on the Iowa Model for Evidence-Based Practice was developed, validated, and determined to be reliable by the authors. Site coordinators organized and managed the orientation, administration, and collection of data from the 2,736 registered nurses who worked in 6 hospitals, 65 affiliated clinics, and 3 business units. Narrative notes taken by study investigators were analyzed for themes to determine challenging and facilitating factors for conducting regional research. Results: Education and job title significantly predicted knowledge and ability to perform research activities but was not related to willingness to engage in research activities. Several environmental factors were associated with knowledge of, willingness to engage in, and ability to perform research utilization activities. Challenging and facilitating factors to conducting regional research were identified. Conclusions/Implications: Our research environment is changing to value research as shown in the philosophy, conceptual framework, and bylaws for the professional nursing staff. Novice-to-expert research utilization expectations are included in the promotional model for nursing. All RN job descriptions and the annual performance tool were revised to include responsibilities related to research activities. The Iowa Model for Evidence-Based Practice was adopted as the method for creating practice validation and change. Train-the-trainer educational and experiential sessions are being designed for nurse leaders; all new RN employees complete a self-assessment tool of research utilization knowledge and the nursing division strategic goals incorporate research utilization expectations. The elements of this plan may be useful for nurse executives. Healthcare systems are restructuring throughout the world and within the United States. These changes are occurring to better meet the evolving healthcare needs of the population through cost-effective approaches. Within the United States, emerging organized healthcare systems require research related to patient care outcomes and the health systems that can best address them

The Athletes\u27 Relationships with Training Scale (ART): A Self-Report Measure of Unhealthy Training Behaviors Associated with Eating Disorders

Objective: Several studies indicate that eating-disorder (ED) psychopathology is elevated in athletes compared to non-athletes. The assessment of excessive exercise among athletes is a challenge because, compared to non-athletes, athletes are required to train at higher intensities and for longer periods of time. However, individuals participating in competitive sports are still susceptible to unhealthy physical-activity patterns. Most ED assessments were developed and normed in non-athlete samples and, therefore, do not capture the nuances of athletes\u27 training experiences. The purpose of the current study was to develop and validate a clinically useful, self-report measure of unhealthy training behaviors and beliefs in athletes, the Athletes\u27 Relationships with Training Scale (ART). Method: The initial item pool was administered to N = 267 women collegiate athletes who were participating in an ED prevention program study and N = 65 women athletes who were in ED treatment. Results: Factor analyses indicated the ART had a four-factor structure. Factorial and construct validity of the ART were demonstrated. ART scores significantly predicted health care utilization and differed between athletes with an ED versus athletes without an ED. For athletes in ED treatment, ART scores significantly decreased from treatment admission to discharge. Discussion: The ART showed evidence of strong psychometric properties and clinical utility. The ART could be helpful for clinicians and athletic trainers to help gauge whether athletes are engaging in unhealthy training practices that may warrant clinical attention and for tracking clinical outcomes in athletes with EDs who are receiving treatment

Athletes’ Relationships with Training Scale (ART)

The Athletes’ Relationships with Training Scale (ART)* is a self-report measure of unhealthy training behaviors and beliefs in athletes. The ART was designed for use by clinicians and athletic trainers to help identify athletes who are engaging in unhealthy training practices which could be associated with an eating disorder. The ART may also be helpful for tracking clinical outcomes in athletes with eating disorders who are receiving treatment. This record contains the 15-item ART as well as scoring instructions and guidelines for interpreting total scores

Identifying and prioritising unanswered research questions for people with hyperacusis: James Lind Alliance Hyperacusis Priority Setting Partnership

Objective To determine research priorities in hyperacusis that key stakeholders agree are the most important. Design/setting A priority setting partnership using two international surveys, and a UK prioritisation workshop, adhering to the six-staged methodology outlined by the James Lind Alliance. Participants People with lived experience of hyperacusis, parents/carers, family and friends, educational professionals and healthcare professionals who support and/or treat adults and children who experience hyperacusis, including but not limited to surgeons, audiologists, psychologists and hearing therapists. Methods The priority setting partnership was conducted from August 2017 to July 2018. An international identification survey asked respondents to submit any questions/uncertainties about hyperacusis. Uncertainties were categorised, refined and rephrased into representative indicative questions using thematic analysis techniques. These questions were verified as ‘unanswered’ through searches of current evidence. A second international survey asked respondents to vote for their top 10 priority questions. A shortlist of questions that represented votes from all stakeholder groups was prioritised into a top 10 at the final prioritisation workshop (UK). Results In the identification survey, 312 respondents submitted 2730 uncertainties. Of those uncertainties, 593 were removed as out of scope, and the remaining were refined into 85 indicative questions. None of the indicative questions had already been answered in research. The second survey collected votes from 327 respondents, which resulted in a shortlist of 28 representative questions for the final workshop. Consensus was reached on the top 10 priorities for future research, including identifying causes and underlying mechanisms, effective management and training for healthcare professionals. Conclusions These priorities were identified and shaped by people with lived experience, parents/carers and healthcare professionals, and as such are an essential resource for directing future research in hyperacusis. Researchers and funders should focus on addressing these priorities.Additional co-authors: Tracey Pollard, Helen Henshaw, Toto A Gronlund, Derek J Hoar