2011 Conference Abstracts: Annual Undergraduate Research Conference at the Interface of Biology and Mathematics

Abstract book for the Third Annual Undergraduate Research Conference at the Interface of Biology and Mathematics Date: October 21-22, 2011Plenary speaker: J. Carl Panetta, Department of Pharmaceutical Sciences, St. Jude Children\u27s Research HospitalFeatured Speaker: John Jungck, Mead Chair of the Sciences and Professor of Biology, Beloit Colleg

We Were the Eyes and Ears... : Nursing and the Development of Neonatal intensive Care Units in the United States, 1955-1982.

ABSTRACT WE WERE THE EYES AND EARS... : NURSING AND THE DEVELOPMENT OF NEONATAL INTENSIVE CARE UNITS IN THE UNITED STATES, 1955-1982. Briana Ralston, MS, RN Julie Fairman, PhD, RN, FAAN In the 1960s and 1970s, neonatal intensive care units (NICUs) became the standard of care for critically ill newborns in hospitals across the United States. Though work has been done to examine how nurses participated in the development of ICU\u27s for adult populations, scholarship related to the formation of NICUs is sparse. Using historical methodology to examine hospital archival data, oral history interviews, and scholarly literature, this work examines the roles nurses played in the development of NICUs as technological systems between 1955 and 1982 in the United States. By using the lenses of the history of nursing, the history of technology, and the history of children\u27s healthcare, this work contributes to our understanding of the nuanced ways nurses participated in the formation of the NICU - a complex technological system of care - for a vulnerable and medically complicated newborn patient population. The value of newborns as a unique and valued medical population, seen as early the Progressive Era, contributed to the formation of premature infant units and particular nursing care for premature newborns during the first half of the 20th century. This premature infant care in turn influenced the development of later neonatal intensive care units and the ways nurses cared for a broader cadre of sick newborns. Hospitals valued the particular care they gave and made decisions about the dedication of spaces where newborns could be grouped together to receive nursing care. Two case studies of east coast children\u27s hospitals - The Children\u27s Hospital of Philadelphia and Boston Children\u27s Medical Center - shed light on how particular hospitals chose to allocate resources, group patients, and how they made those decisions based on their value of specifically trained nursing staff. The history of NICUs speaks to broader contemporary healthcare themes and issues as we ask questions about who should receive care and precious healthcare resources

Dietary Supplement Labeling: Cognitive Biases, Market Manipulation & Consumer Choice

There exists increasing concern that the Dietary Supplements Health and Education Act (DSHEA) has proven ineffective. Much of the concern regards the disparity in legislative treatment between dietary supplements, foods, and pharmaceutical drugs. Namely, while pharmaceutical drugs must undergo years of costly pre-market testing, most supplements, like foods, can immediately enter the market, and only after repeated instances of adverse reactions can the Food and Drug Administration (FDA) remove them. Such a framework appears to belie both consumer expectations and marketing strategies, as supplements tend to be most perceived for their apparent medicinal qualities. This philosophy of waiting for a foreseeable harm also strikes many as unnecessary, inefficient, and immoral. On the other hand, most supplements have proven safe and either benign or reasonably effective. Moreover, before policy-makers mandate extensive pre-market testing of all supplements, consider the likely effect on production: a certain percentage of supplement makers will find the economics of production too costly and will thus leave the market. Granted, foreign markets for supplements might still provide the requisite incentives for production, but a more costly entrance fee into the U.S. market would clearly deter some level of production and convince a number of makers to leave the market altogether. Equally troubling, companies which choose to remain in the market would presumably pass on a portion of the increased costs to consumers, who often bear the costs of heightened regulation. Consequently, many beneficial supplements would be priced out of the reach of consumers who either have become users of those products or could become users. The issue then is one of nuance. Rather than sweeping regulatory intervention, perhaps more carefully-tailored alterations would prove most desirable. This philosophy appears desirable given informational deficiencies among dietary supplement consumers, particularly those with exploitable cognitive biases. Promisingly, such deficiencies may be ameliorated through low-cost measures that promote enhanced communication of product characteristics. For these reasons, this Article proposes a refined approach to dietary supplement labeling that would legally distinguish them on the basis of potential risk and anticipated benefit. Indeed, the existing legal construct of the phrase dietary supplements is both curious and overly simplistic. It includes minerals, vitamins, herbs, botanical extracts, and amino acids - items that are not only functionally different, but which present radically different risks and benefits. Along those lines, the very consumers of supplements should be more carefully distinguished. How might such a revised communicatory model work without precipitating material price increases or deterring beneficial production? One method would entail more carefully-contemplated labeling requirements. Such requirements should enhance consumer risk-assessment and reward reputable supplement manufacturers. To accomplish these goals, labels should reveal potential interactions with pharmaceutical drugs and other supplements, warnings of over-usage, predictable distinctions between health claims and structure/function claims, and a recommended intake range based on age and gender, among other personal characteristics. Of similar benefit would be assured ingredient content, as well as greater coordination between the FDA and the Federal Trade Commission (FTC) in regulating false or misleading supplement claims. Importantly, because such labeling requirements would impose only minimal cost increases to manufacturers

Bridging the Gap:Reporting Baseline Characteristics, Process and Outcome Parameters in Hirschsprung's Disease. A Systematic Review

Introduction: The variation in standardized, well-defined parameters in Hirschsprung's disease (HSCR) research hinders overarching comparisons and complicates evaluations of care quality across healthcare settings. This review addresses the significant variability observed in these parameters as reported in recent publications. The goal is to compile a list of commonly described baseline characteristics, process and outcome measures, and to investigate disparities in their utilization and definitions. Materials and Methods: A systematic review of literature on the primary care process for HSCR was performed according to PRISMA guidelines. Relevant literature published between 2015 and 2021 was obtained by combining the search term Hirschsprung's disease with treatment outcome, complications, mortality, morbidity, survival in Medline, Embase and the Cochrane Library. We extracted study characteristics, reported process and outcome parameters, and patient and disease characteristics. Results: We extracted 1026 parameters from 200 publications and categorized these into patient characteristics (n=226), treatment and care process characteristics (n=199), and outcomes (n=601). 116 parameters were reported in more than 5% of publications. The most frequently reported characteristics were sex (88%), age at surgery (66%), postoperative Hirschsprung-associated enterocolitis (64%), type of repair (57%), fecal incontinence (54%), and extent of aganglionosis (51%). Conclusion: This review underscores the pronounced variation in reported parameters within HSCR studies, highlighting the necessity for consistent, well-defined measures and reporting systems in order to foster improved data interpretability. Moreover, it advocates for the use of these findings in the development of a Core Indicator Set, complementing the recently developed Core Outcome Set. This will facilitate quality assessments across pediatric surgical centers throughout Europe.</p

Come On. I Need An Answer. A Mixed-Methods Study Of Barriers And Disparities In Diagnostic Odysseys

Background: The boom of next generation DNA sequencing over the past decade has improved our ability to provide accurate genetic diagnoses for children with previously undiagnosed diseases, in turn leading to important advances in management and prognostication. Even given this progress, two areas of ongoing need are the accurate definition of further novel genetic diseases and to make genetic expertise and diagnostics widely available to children and families who have frequently endured grueling diagnostic odysseys. The Pediatric Genomics Discovery Program (PGDP) at Yale is an advanced genomics program focusing on both these areas, enrolling over 700 patients since its inception and eventually providing approximately one-third with new genetic diagnoses. Despite this success, we questioned whether the PGDP was achieving its full potential for impact by reaching a broad, representative participant population. Hypothesis: Current PGDP participant demographics are not representative of the racial/ethnic and socioeconomic diversity in the community of patients with potentially undiagnosed genetic diseases, which may relate to systemic barriers along the diagnostic odyssey. Methods: We created a questionnaire and in-depth interview process for existing PGDP participants to evaluate barriers to diagnostic care, then analyzed transcripts for themes. We analyzed demographic characteristics and referral routes of the PGDP cohort to find factors related to recruitment. We developed a screening tool based on diagnostic codes and queried the Yale New Haven Health System (YNHHS) electronic health record (EHR) to identify inpatient children between 2017-2022 with potentially undiagnosed genetic conditions, estimate their prevalence, and compare their characteristics with those already enrolled in PGDP. Then, we manually reviewed patient charts further narrow patients down to those who likely had undiagnosed genetic diseases. We used Pearson chi-square for categorical data, a multinomial regression model for predictors of enrollment, and Kruskal-Wallis one-way analysis of variance with pairwise comparisons with Bonferroni correction for multiple comparisons. Results: Survey results noted 1) Not knowing the PGDP existed (42%) and 2) Not knowing if they qualified for PGDP (36%) as the most common barriers to participant enrollment. Qualitative interviews identified three overarching themes related to the search for a unifying medical diagnosis for patients and families: 1) Challenges along the diagnostic odyssey (largely barriers in the healthcare system), 2) Tools to navigate the uncertainty (particularly parent serving as a care-captain) and 3) Perceptions of the PGDP (having reservations about participating vs desire for a diagnosis). In the PGDP cohort analysis, being directly identified by a PGDP-affiliated physician was associated with the highest representation of URM (52%) compared to referrals through Yale Genetics (27%) or Other Referrals (16%), and a significantly greater URM representation compared to both the national pediatric population (p=0.008) and to a peer genetics program (

Integrated Community Case Management of Childhood Illness in Ethiopia: Implementation Strength and Quality of Care

Problem statement: Ethiopia has scaled-up integrated community case management of childhood illness (iCCM). This study assessed iCCM implementation strength and quality of care provided by Health Extension Workers (HEWs). Methods: A survey of 150 health posts, 201 HEWs and 257 sick children. Data collection consisted of direct observation of consultations with sick children; caretaker exit interviews; gold standard re-examinations; examinations of commodities; register reviews; and HEW interviews. Paper 1 presents estimates of iCCM implementation strength and quality of care. Paper 2 assesses methods of recruitment of sick children for assessment of quality of care, assesses the validity of register review (RR) and direct observation only (DO) compared to direct observation with re-examination (DO with RE) for assessing quality of care; and assesses the impact of observation on HEW performance. Paper 3 uses multivariate logistic regression to assess associations between quality of care and program interventions. Results: Paper 1: Implementation of iCCM was strong. Most children (64%) were correctly managed. However, just 34% of children with severe illness were correctly managed. Intervention health posts had an average of only 16 sick child consultations in the previous month. Paper 2: Mobilization and recruitment of sick children were feasible and productive methods of obtaining a sample of sick children. Compared to DO with RE, RR and DO produced estimates of quality of care with mostly fair or moderate agreement. The differences between estimates of correct care for observed versus not observed children were small. Paper 3: Performance Review and Clinical Mentoring meetings, follow-up training and number of drugs available were significantly positively associated with quality of care, but supervision, clinical instruction at health centers and availability of supplies were not. Conclusions: The Ethiopia iCCM program has been implemented well and HEWs are providing high quality care. However, low utilization of services will limit the impact of iCCM. Methodological lessons from this study include: 1) sick children can be mobilized or recruited in communities for observation, 2) RR and DO are reasonable, if imperfect, alternatives to DO with RE and 3) observation may not have a large effect on CHW performance

Autism Speaks in Rabat and Casablanca

Autism Speaks has initiatives to better understand the challenges families of children with autism in Morocco face, with the goal of promoting solutions for their difficulties. The project collected data on the issues and challenges caregivers of families of children with autism faced in Moroccan society. I interviewed families in Rabat and Casablanca. From the results a key finding was that a large percentage of interviewed families did not receive autism diagnosis for their children before the age of two, which is recommended by Autism Speaks. I sent the data collected to Autism Speaks and presented my findings from the results and offered recommendations to NGOs and Autism Speaks for policies they could implement to better service children with autism

Increasing Knowledge About Food Allergy Management in the Preschool Setting

The prevalence of food allergies is a growing concern in the United States. Approximately 8% of the pediatric population has some form of food allergy. Many of these children are either in the preschool and primary school setting, which is where the majority of allergic reactions occur. If the symptoms of a food allergy reaction are not treated within minutes of exposure, the results can be damaging or fatal. Evidence continues to demonstrate that preschool and school personnel do not feel trained or prepared should a severe reaction arise. The purpose of this evidence-based project was to determine if the implementation and instruction of food allergy guidelines and an educational in-service program on the treatment of food allergies would increase the knowledge and ability of preschool personnel to respond should a reaction occur. The adult learning theory of Knowles and Bandura\u27s theory of self-efficacy were the theoretical frameworks for this project. This project incorporated a 40-minute educational in-service along with the introduction of food allergy guidelines including an emergency action plan and epinephrine auto-injector training. A pretest and posttest were administered prior to and following the educational in-service, respectively. A paired sample t test revealed there was a dramatic increase in knowledge following the educational in-service about food allergy management, recognition, and treatment. Preschool personnel felt more empowered to react should a food allergy reaction occur. By teaching preschool-personnel about food allergies, they will have the necessary resources that will support the creation of a safer environment for children challenged with food allergies

A description of the mental health outcomes of HIV positive adolescents accessing care in Johannesburg

A thesis completed by published work. Submitted to the School of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, in fulfillment of the requirements for the degree of Doctor of Philosophy. johannesburg, South Africa. September, 2017.Background: Adolescents living with HIV are an emerging group in the global HIV/AIDS epidemic. Mental health in this population impacts HIV care, treatment, consequential morbidity and secondary transmission. Perinatally infected HIV positive adolescents (PIA) have high prevalence of mental health disorders; loss and bereavement are particularly pervasive in their lives, however little is known about the mental health of PIA retained in care in South Africa. How PIA beliefs concerning their HIV infection are affected by the cumulative effect of bereavement (particularly of parents), the failure to disclose to them the cause of death and the manner in which they learn their own HIV positive status, is a subject understudied. Similarly, there is a paucity of research on effective ways to manage such bereavement. Resilience, or positive adaptation to challenging situations, may be particularly important for PIA, who are exposed to significant stigma, risks and stressors. However, there is limited research regarding adolescents in South Africa, partly because section 71 of the National Health Act (NHA) requires parental or guardian's consent. This presents a significant barrier to research on HIV infected adolescents aged under 18 years. The aim of this research is to describe the mental health of HIV positive adolescents (13-19 years) accessing care and treatment in Johannesburg and generate evidence to inform mental health policy for this population in South Africa. The study describes the mental health outcomes of this population with a focus on how bereavement and disclosure impacts on mental health, as well as how resilience is manifest in this group. Methods: Prior to commencement of the research, an order was obtained from the High Court in Johannesburg as upper guardian of minor children for the statutory parental or guardian’s consent. For the thesis, data from three studies are presented in five published papers. These studies were conducted using a combination of qualitative and quantitative techniques resulting in a mixed methods study design. For the quantitative study, HIV positive adolescents aged 13-19 years (n=343) accessing five pediatric antiretroviral clinics in Johannesburg were assessed using standardized measures for depression (Children’s Depression Inventory), anxiety (Children’s Manifext Anxiety Scale), post traumatic stress disorder (PTSD) (Child PTSD Checklist) and suicidality (MINI International Psychiatric Interview). In addition to mental health, the survey captured information regarding HIV, sexual reproductive health and coping. Descriptive and bivariate analyses were conducted on all variables using Statistica v13. Two qualitative studies were conducted. The first purposively selected 25 participants from the larger study. The aim was to identify elements of resilience through in-depth interviews in this group of PIA. The second identified the most and least symptomatic participants (n=26) from the larger cohort on scores for mental health (depression, anxiety, post traumatic stress disorder, suicidality). Drawings and written accounts of the loss of a significant attachment figure of participants were assessed and compared by professionals (art therapists, psychologists, social workers and counsellors) in three focus group discussions. The goal of this study was to understand the influence of bereavement on mental health and the use of drawing and writing in expressing the experience of loss. Data were analysed in NVIVO 10 using a thematic approach to coding. The final paper details the process of obtaining ethical approval for research with adolescents in public health facilities through a case study (this PhD). Results: Of the enrolled 343 participants, 27% were symptomatic for depression, anxiety or PTSD; 24% reported suicidality. Results indicated high rates of comorbidity amongst depression, anxiety and PTSD. Females scored significantly higher for depression (p<.001), anxiety (p<.01), and PTSD (p<.001) than males. Those reporting suicidality also reported significantly higher on all three mental health scales suggesting that suicidal individuals are more likely to present with higher levels of depression (p<.001), anxiety (p<.001) and PTSD (p<.001). Almost 90% did not feel that they belonged in the family with which they lived. Peer violence was significantly correlated to all mental health problems, also hunger, being inappropriately touched, being hit and being female. High exposure to violence was evident and not feeling safe at home or in community increased risk for all mental health disorders. Knowing one’s HIV status, however, was protective as was having dreams for the future. The qualitative studies highlighted that despite marked stressors in the lives of these adolescents, a high degree of resilience was described. Characteristics of resilience in this group included a pertinent set of beliefs, including a belief in fate and recognition of personal strength as a consequence of managing adversity. Character traits such as a pragmatic acceptance about one’s life, actively taking responsibility, and a robust self-esteem were evident. Social behaviours included the ability to pursue and access adults and healthcare to meet developmental needs, having a desire to support and help others and challenging HIV related stigma. These characteristics were underscored by the capacity for self-reflection. The studies also revealed that PIA have limited understanding of how they became infected, vertical transmission and potential benefits of PMTCT to their future reproductive needs, despite disclosure. Most participants were experiencing complicated grieving which was impacting negatively on their mental health, ability to accept their HIV status and adhere to treatment. The drawings and written accounts of the qualitative study accentuated contextual deprivation, including high exposure to multiple and consistent losses of significant attachment figures. They also pointed to emotional deprivation and impoverishment, including unresolved complicated grieving. Views from participants emphasized missed opportunities, including failure to address the mental health concerns of this population at risk. The case study suggested that without court intervention, most of the participants, being orphans without guardians, could not have participated in the research because the statutory consent was otherwise impossible. This case study argues for exceptions to the parental consent requirement, by reason of the exclusion of Orphaned and Vulnerable Children and Youth (OVCY) from research. Inconsistent and confusing legal policy that inadvertently silences voices that most need to be heard, as well as law that is inconsistent with principles of justice, inclusiveness and autonomy, are put forward to argue for a change to the National Health Act. Conclusion: HIV positive adolescents accessing care demonstrate high levels of mental health problems that are largely unrecognized and could potentially be addressed within health systems. Recognition of mental health challenges in PIA is crucial to effective HIV care and treatment and providers need to be sufficiently sensitized to this reality. PIA need improved communication regarding vertical transmission and PMTCT to properly understand their HIV status and engage effectively in management. Honest communication about how relatives died and disclosure of HIV status is necessary to reduced stigma, complicated grieving and improve mental health. The impact of unprocessed loss early in life has long-term negative consequences for PIA. Innovative methods are required to address unmet mental health needs of this patient population. The use of non-verbal methods (drawing and writing) by healthcare professionals could be especially valuable to both patient and provider, particularly in the case of managing bereavement. PIA, who face high levels of hardship and change, nevertheless exhibit strong resiliency beliefs, traits, and behaviours. Healthcare environments have the potential to be utilized as powerful resources in fostering resilience in PIA, if characteristics of adolescent resilience are integrated into prevention and intervention programming. Finally, a balance is required between protecting adolescents from exploitation and permitting access to benefits of research. Mandating parental consent for all research does not necessarily give effect to policy. For the vast majority of South African HIV infected adolescents parental consent is not possible. Adolescents are understudied and poorly understood and although these laws are there to protect this vulnerable group, it also makes them and their problems less visible. In order to scale up interventions, careful consideration needs to be placed on how the laws can help researchers benefit adolescents. Section 71 of the National Health Act ought to be amended to facilitate valuable and necessary research concerning HIV infected orphan children and adolescents. Keywords: perinatal HIV infection, HIV positive adolescents, vulnerable youth, mental health, healthcare system, disclosure, violence, orphan, bereavement, complicated grief, drawing, resilience, research, National Health ActLG201