Decision Making in Expanded Newborn Screening: The Case of Duchenne Muscular Dystrophy.

Background. Newborn screening (NBS) is a mandatory public health program aimed at the early identification of babies with conditions that will benefit from early diagnosis and treatment. With increasing technology, some programs have offered optional NBS for diseases for which there is limited treatment efficiency data. This dissertation used Duchenne muscular dystrophy (DMD) as an exemplar to address whether variation in the presentation and structural characteristics of NBS influence decision making. Methods. In 3 randomized survey experiments using Internet samples, I explored characteristics of test structure and presentation that may motivate utilization of DMD NBS. The primary outcome variable was intent to utilize DMD NBS with additional outcome variables of attitudes towards DMD NBS. Results. Providing a context of mandatory NBS (either bundled or unbundled) influenced DMD NBS intent and attitudes towards DMD NBS. When participants were not given this broader context in which to place a specific optional NBS, they were more hesitant to choose testing. Neither the mode of results release, nor the overall test purpose guiding the release, were significant predictors when parents lacked any specific reason to believe their child was at risk. However, an interaction of DMD NBS purpose and perceived vulnerability showed that personal purpose increased DMD NBS intent when perceived vulnerability existed, but DMD NBS intent was relatively consistent regardless of perceived vulnerability when the test’s main purpose was research. Conclusions. New parents are increasingly being faced with optional NBS decisions, yet there is no consistent policy regarding optional NBS communication, in terms of the information included and the way this information is presented. The results suggest that future optional NBS programs should be careful to present testing information in a way that explains how a single optional NBS test fits into overall mandatory NBS. Additionally, health professionals should attend to parents’ perceptions of their child’s vulnerability, which appears to be a broader construct than simply family history of a specific disease. Increasing attention to the influence of such structural factors and individual differences on optional NBS decision making will become more and more important as NBS programs are likely to continue expanding.PHDHealth Behavior & Health EducationUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttp://deepblue.lib.umich.edu/bitstream/2027.42/98052/1/selillie_1.pd

Lung Cancer Screening in a Community Setting: Characteristics, Motivations, and Attitudes of Individuals Being Screened

We describe the characteristics of individuals being screened in community settings including factors influencing screening decisions and the level of information sought prior to screening. Individuals from two community-based radiology clinics (N = 27) were surveyed after screening. Screening efficacy and salience were the most important factors in screening decisions, whereas healthcare provider recommendations were rated not important. Half of participants reported no or little conversation about screening with their primary care provider, and 61.5 percent had not sought any information on screening. Individuals being screened in a community setting are unlikely to have sufficient information for an informed decision about screening

The effect of rhythm and melody on language development and sensory organization in children with autism

Title from PDF of title page, viewed on June 11, 2012Thesis advisor: Deanna Hanson-AbromeitVitaIncludes bibliographic references (p. 96-105)Thesis (M.M. Ed.)--Conservatory of Music and Dance. University of Missouri--Kansas City, 2012Research in language, neurology, and music suggests that constructs of music to provide organization, such as rhythm and melody, may facilitate language skill development and sensory organization for children with autism. This project inquired whether rhythmic speech or melody during free-play and intervention sessions could help increase language production and organize sensory systems, displayed by Restricted, Repetitive Stereotypical behaviors (RRS), for children diagnosed with autism. Statistical analysis of the data determined that neither language skills nor RRS behaviors were significantly influenced by rhythmic speech or rhythmic speech with melody. While statistical analysis did not suggest an effect, observational data collected during the sessions did suggest that auditory perception and orientation toward language might have been positively effected by rhythm and melody. Further research is necessary to determine how the organizing principles of rhythm and melody might affect the language development of children with autism. Anecdotal evidence is discussed to support future research in this field.Introduction -- Review of literature -- Method -- Results -- Discussion -- Appendix A. UMKC SSIRB approval letter -- Appendix B. Request for participation in a research study -- Appendix C. Consent for participation in a research study -- Appendix D. Data collection tool -- Appendix E. Matched-sentences and musical examples -- Appendix F. Raw dat

Development of On-Shore Behavior Among Polar Bears (\u3ci\u3eUrsus maritimus\u3c/i\u3e) in the Southern Beaufort Sea: Inherited or Learned?

Polar bears (Ursus maritimus) are experiencing rapid and substantial changes to their environment due to global climate change. Polar bears of the southern Beaufort Sea (SB) have historically spent most of the year on the sea ice. However, recent reports from Alaska indicate that the proportion of the SB subpopulation observed on‐shore during late summer and early fall has increased. Our objective was to investigate whether this on‐shore behavior has developed through genetic inheritance, asocial learning, or through social learning. From 2010 to 2013, genetic data were collected from SB polar bears in the fall via hair snags and remote biopsy darting on‐shore and in the spring from captures and remote biopsy darting on the sea ice. Bears were categorized as either on‐shore or off‐shore individuals based on their presence on‐shore during the fall. Levels of genetic relatedness, first‐order relatives, mother–offspring pairs, and father–offspring pairs were determined and compared within and between the two categories: on‐shore versus off‐shore. Results suggested transmission of on‐shore behavior through either genetic inheritance or social learning as there was a higher than expected number of first‐order relatives exhibiting on‐shore behavior. Genetic relatedness and parentage data analyses were in concurrence with this finding, but further revealed mother–offspring social learning as the primary mechanism responsible for the development of on‐shore behavior. Recognizing that on‐shore behavior among polar bears was predominantly transmitted via social learning from mothers to their offspring has implications for future management and conservation as sea ice continues to decline

What Does Child Protective Services Investigate as Neglect? A Population-Based Study

Most child protective services (CPS) investigations involve allegations of neglect. Broad and vague definitions have led to concerns that CPS-investigated neglect is driven by poverty-based material hardship. In a representative sample of 295 neglect investigations in California in 2017, structured data and narrative text fields were used to characterize the types of neglect and concurrent parental risk factors investigated by CPS and to assess the rate and nature of investigated physical neglect, defined as inadequate food, housing, or hygiene. The most common types of neglect were inadequate supervision (44%) and failure to protect (29%), followed by physical neglect (14%). Common risk factors identified in neglect investigations were parental substance use (41%), domestic violence (21%), mental illness (18%), and co-reported physical or sexual abuse (29%). Nearly all investigations of physical neglect (99%) included concerns related to substance use, domestic violence, mental illness, co-reported abuse or an additional neglect allegation (i.e., abandonment). Given concerns identified in neglect investigations, economic supports are likely insufficient without an array of behavioral-health supports

The Islamic Association of Raleigh, Raleigh, North Carolina : an action-oriented community diagnosis : findings and next steps of action

From September 2004 to April 2005, six first year Master of Public Health students from the School of Public Health, University of North Carolina at Chapel Hill, completed an Action-Oriented Community Diagnosis (AOCD) of the Islamic Association of Raleigh (IAR), under the guidance of Dr. Ahmad-Rufai Abdullah. A purpose of the AOCD is to develop a partnership between the student practitioners and the community. This AOCD examined what life is like for Muslims living in the greater Triangle area. The AOCD used both primary data, collected through interviews and focus groups with thirteen service providers and twenty five community members, as well as secondary data, to identify the strengths and needs of the IAR community. The strengths of the community included a highly diverse population, a wide variety of services available to the community, a leadership body that is responsive to community needs, a very active core of volunteers, and a strong sense of identity and purpose. The areas of concern and several of the corresponding action steps were: Social and welfare services: create a resource booklet, increase awareness of the IAR food pantry, hire a full time psychologist, raise additional funds. Relations with non-Muslims: hold a workshop on how to relate to non-Muslims, volunteer in non-Muslim organizations, build bridges with other communities. Youth: have Muslims youth spend time with other Muslims, hold parent-training groups, have workshops for Muslims youth who are unsure of their religion. Volunteerism: formalize volunteer requirements, make announcements about volunteer opportunities during Friday lectures, post opportunities on IAR website. The findings were presented to the community at a community forum, held at the IAR on April 22, 2005, for discussion and to determine specific action steps.Master of Public Healt

Tables or Bar Graphs? Presenting Test Results in Electronic Medical Records

Electronic personal health records offer a promising way to communicate medical test results to patients. We compared the usability of tables and horizontal bar graphs for presenting medical test results electronically

Contribution of patient, physician, and environmental factors to demographic and health variation in colonoscopy follow-up for abnormal colorectal cancer screening test results

BACKGROUND: Patient, physician, and environmental factors were identified, and the authors examined the contribution of these factors to demographic and health variation in colonoscopy follow-up after a positive fecal occult blood test/fecal immunochemical test (FOBT/FIT) screening. METHODS: In total, 76,243 FOBT/FIT-positive patients were identified from 120 Veterans Health Administration (VHA) facilities between August 16, 2009 and March 20, 2011 and were followed for 6 months. Patient demographic (race/ethnicity, sex, age, marital status) and health characteristics (comorbidities), physician characteristics (training level, whether primary care provider) and behaviors (inappropriate FOBT/FIT screening), and environmental factors (geographic access, facility type) were identified from VHA administrative records. Patient behaviors (refusal, private sector colonoscopy use) were estimated with statistical text mining conducted on clinic notes, and follow-up predictors and adjusted rates were estimated using hierarchical logistic regression. RESULTS: Roughly 50% of individuals completed a colonoscopy at a VHA facility within 6 months. Age and comorbidity score were negatively associated with follow-up. Blacks were more likely to receive follow-up than whites. Environmental factors attenuated but did not fully account for these differences. Patient behaviors (refusal, private sector colonoscopy use) and physician behaviors (inappropriate screening) fully accounted for the small reverse race disparity and attenuated variation by age and comorbidity score. Patient behaviors (refusal and private sector colonoscopy use) contributed more to variation in follow-up rates than physician behaviors (inappropriate screening). CONCLUSIONS: In the VHA, blacks are more likely to receive colonoscopy follow-up for positive FOBT/FIT results than whites, and follow-up rates markedly decline with advancing age and comorbidity burden. Patient and physician behaviors explain race variation in follow-up rates and contribute to variation by age and comorbidity burden. Cancer 2017;123:3502-12. Published 2017. This article is a US Government work and is in the public domain in the USA

A T Cell-inducing influenza vaccine for the elderly: safety and immunogenicity of MVA-NP+M1 in adults aged over 50 years

Current influenza vaccines have reduced immunogenicity and are of uncertain efficacy in older adults. We assessed the safety and immunogenicity of MVA-NP+M1, a viral-vectored influenza vaccine designed to boost memory T cell responses, in a group of older adults.Thirty volunteers (aged 50-85) received a single intramuscular injection of MVA-NP+M1 at a dose of 1·5×10(8) plaque forming units (pfu). Safety and immunogenicity were assessed over a period of one year. The frequency of T cells specific for nucleoprotein (NP) and matrix protein 1 (M1) was determined by interferon-gamma (IFN-γ) ELISpot, and their phenotypic and functional properties were characterized by polychromatic flow cytometry. In a subset of M1-specific CD8(+) T cells, T cell receptor (TCR) gene expression was evaluated using an unbiased molecular approach.Vaccination with MVA-NP+M1 was well tolerated. ELISpot responses were boosted significantly above baseline following vaccination. Increases were detected in both CD4(+) and CD8(+) T cell subsets. Clonality studies indicated that MVA-NP+M1 expanded pre-existing memory CD8(+) T cells, which displayed a predominant CD27(+)CD45RO(+)CD57(-)CCR7(-) phenotype both before and after vaccination.MVA-NP+M1 is safe and immunogenic in older adults. Unlike seasonal influenza vaccination, the immune responses generated by MVA-NP+M1 are similar between younger and older individuals. A T cell-inducing vaccine such as MVA-NP+M1 may therefore provide a way to circumvent the immunosenescence that impairs routine influenza vaccination.ClinicalTrials.gov NCT00942071

What is a good medical decision? A research agenda guided by perspectives from multiple stakeholders

Informed and shared decision making are critical aspects of patient-centered care, which has contributed to an emphasis on decision support interventions to promote good medical decision making. However, researchers and healthcare providers have not reached a consensus on what defines a good decision, nor how to evaluate it. This position paper, informed by conference sessions featuring diverse stakeholders held at the 2015 Society of Behavioral Medicine and Society for Medical Decision Making annual meetings, describes key concepts that influence the decision making process itself and that may change what it means to make a good decision: interpersonal factors, structural constraints, affective influences, and values clarification methods. This paper also proposes specific research questions within each of these priority areas, with the goal of moving medical decision making research to a more comprehensive definition of a good medical decision, and enhancing the ability to measure and improve the decision making process