ACCEL Funded Community Engaged Research Studies
Year 11
Study Team
Tia Barnes and Danielle Hatchimonji CI, Mary Dozier Mentor
Study Team
Asanthi M Ratnasekera DO FACS, Claudine Jurkovitz- Mentor Christiana Care Health System, Jonathan Imran MD Collaborator
Year 9
Study Team
Deepika Thacker and Jennie Ryan CI, Sam Gidding, Mentor, Erica Sood, PhD Mentor
Study Team
Lauren B Covington, PhD, RN, Freda Patterson Mentor, Douglas Teti Mentor, Jean-Philippe Laurenceau, M.S., Ph.D. Mentor, Emily Hauenstein Mentor, Abigail Strang, Community / Clinical partner
Year 8
Study Team
Stephanie Guarino, Center for Special Health Care Needs Sickle Cell Program, Christiana Care (PI); Vanessa Patel, ChristianaCare (Co-I); Charmaine Wright, Center for Special Health Care Needs, Christiana Care (Co-I); Peter Mende-Siedlecki, University of Pennsylvania (Co-I); Sophie Lanzkron (Mentor), Johns Hopkins University; Lee Pachter, ChristianaCare (Mentor)
What we wanted to learn and why it matters
Sickle cell disease impacts more than 100,000 Americans and about 400 patients, primarily African Americans, in Delaware. About a third of sickle cell patients have daily pain and about half have chronic pain. Both lead to poorer quality of life and higher health care utilization. Our research will adapt a peer-led curriculum for chronic pain self-management program for patients with sickle cell disease and assess its acceptability with adult sickle cell patients in Delaware. We will engage patients with sickle cell disease in the adaptation of the peer-led curriculum and as advisors throughout the research study. We will also survey adults patients with sickle cell about their experiences of racism, discrimination and examine relationships between these experiences and pain and disease manifestations and health care use.
What we did and learned
This study was recently funded and is in progress. We have established a Stakeholder Advisory Board of patients with sickle cell disease and caregivers of persons with sickle cell disease and health care providers and are interviewing patients with sickle cell disease about their needs and the acceptability of an existing pain self-management program. We have conducted our patient survey.
Year 7
Study Team
David Chen, ChristianaCare (PI); LeRoi Hicks, ChristianaCare (Mentor); Yasser Payne, UD (Co-I)
What we wanted to learn and why it matters
Wilmington, DE has high rates of firearm violence. Over 70% of Wilmington residents witnessed or heard community violence. Such exposures negatively impact mental and physical health. Statistical modelling approaches such as Latent Class Analysis (LCA) are commonly used to identify distinct grouping of multiple related factors that contribute to a given outcome. Engaging community members in the interpretation of LCA modelling results may enhance contextual understanding and practical applicability of statistical results. In this study community, university and health system researchers partnered to conduct and interpret LCA modeling of data collected in the Wilmington Street Participatory Action Research Health Survey (N=782 adults). This study assessed exposures to violence and crime, employment and educational opportunity, and health-related quality of life.
What we did and learned
Five community-based participatory action researchers learned LCA concepts, collaborated on model development, and conducted six focus groups with community members (N=48) to obtain input on visual representations of models and class interpretations. LCA models of community and personal violence exposures were developed. Findings indicated multiple contributing factors to structural violence, beliefs and attitudes, and health-related quality of life. Community inputs further strengthened interpretation and understanding of how identified factors related to structural violence, beliefs and attitudes, and health-related quality of life.
Chen D, Alleyne A, Tucker S, Payne Y, Hitchens B, Cornish B, Price L, Copeland K, Chamber D, Caplan R, Russell T, Middlebrook N. Community engaged latent class analysis: mixed methods approach to the intersection of community violence exposure and health.
Year 6
Study Team
Leela Thomas, Delaware State University (PI); James Lenhard, Christiana Care (Co-PI); Mitch Fawcett, Christiana Care; Claudine Jurkovitz, iReach
What we wanted to learn and why it matters
Gestational diabetes mellitus (GDM) occurs in the second or third trimester of pregnancy, and if uncontrolled can lead to maternal and neonatal complications. Studies on disparities in GDM outcomes have focused largely on individual characteristics. A growing body of epidemiological evidence asserts that community characteristics, such as racial residential segregation and income inequality also contribute to health disparities. The association of these variables have rarely been examined in GDM. The objective of our study was to assess whether neighborhood characteristics were associated with patients’ management of GDM and complications of GDM.
What we did and learned
We built a data set that included patient clinical data from the medical records and census data. Patient data included 2,189 women with gestational diabetes who had singleton live births between January 1, 2014 – December 31, 2018. Over half (51%) were white, 20% were African American and 29% were other races; almost all (92%) lived in New Castle County. We found substantial racial segregation, income inequality, and neighborhood deprivation by census tract. We found significant positive associations between adverse birth outcomes such as shoulder dystocia and neighborhood characteristics including the percentage of households living below the poverty level in the neighborhood, percentage of African Americans in the neighborhood, percentage of female headed households in the neighborhood, and percentage of overall unemployment rate in the neighborhood.
Presentations
Thomas, L., Fawcett, M., Jurkovitz, C., Lenhard, J. M., “Association between Residential Environment and Gestational Diabetes Complications,” Academy Health 2020 Annual Research Meeting, July 28, 2020 – August 6, 2020, interactive poster presentation. In – Person meeting in Boston canceled due to COVID-19.
Thomas, L., Fawcett, M., Jurkovitz, C., Lenhard, J. M., “Residential Inequality and Birth Outcomes of Gestational Diabetes,” American Diabetes Association’s Virtual 80th Scientific Sessions, June 12-16, 2020. In-Person meeting in Chicago, Illinois, canceled due to COVID-19.
Study Team
Jennifer Carrano, UD (PI); Ginnie Sawyer-Morris, Barry Bodt, Ronald Gallimore (UDel), Terry Horton (CCHS), Rita Landgraf (UDel), Jean-Philippe Laurenceau (UDel)
What we wanted to learn and why it matters
Many individuals trying to recover from substance use need treatment options that are longer term. Recovery residences (RRs) are residential communities where individuals recovering from substance use disorders (SUDs) co-reside in a drug- and alcohol-free environment. RRs fill an important gap in the continuum of SUD treatment as they offer a long-term, community-based recovery option following formal, often inpatient treatment. However, there is limited research examining the effectiveness of RRs in promoting recovery. This study aims to fill that gap by examining whether, how, and for whom RRs promote recovery from substance use disorders.
What we did and learned
We did a survey each month for 10 months with patients in RRs. We asked them about their current support, financial well-being, perceived stress and experience with stigma as well as what treatment options or support groups they might be using, and if they had relapsed. Analysis is still ongoing, but we learned that women and men experience recovery differently. For example, women experience more feelings of financial strain than men, and are also more prone to depression both when entering a home and also during the time they are there. Similarly, the resources that were found to most help individuals successful recover included social support and financial support.
Read more about this study
Study Team
Heather Bitter Fagan, ChristianaCare (PI); Claudine Jurkovitz, ChristianaCare (Co-I); Freda Patterson, UD (Co-I); Zugui Zhang, ChristianaCare (Co-I); Martha Zazzarino, ChristianaCare (CoI); Ronald Myers, Thomas Jefferson University (Co-I); Keegan Connell, ChristianaCare
What we want to learn and why it matters
Lung cancer claims more lives in the United States than any other cancer. Screening high risk individuals (former and current heavy smokers) with low dose computed tomography (LDCT) saves lives. Yet, lung cancer screening rates are very low. Working with primary care practices is an important way to improve the rate of lung cancer screening and to reach populations made vulnerable to disparities.
What we are doing
Delivering a phone-based decision-making intervention including a tool, the Decision Counseling Program ®(DCP) to help patients know their values, beliefs and preferences about lung cancer screening.
Study Team
Matthew Demczko, Nemours (PI); Erin Crowgey, Nemours (Co-I); Michael Fox, Nemours (Co-I); Anders Kolb, Nemours (Co-I); Erik Puffenberger, Nemours (Co-I); Kevin Strauss, Nemours (Co-I)
What we wanted to learn and why it matters
Next generation sequencing (NGS) technology has transformed the practice of clinical genetics and patient care. This powerful technology has not yet been used to identify patients who are risk for genetic disorders but are not symptomatic. The Old Order Amish (Plain community) are an especially vulnerable population who have a significant risk for debilitating and oftentimes fatal inherited disorders. In this study, we aimed to better understand the genetic risk factors within the Dover Plain community that would permit earlier diagnosis and personalized care delivery. We also assessed the community’s perception of broad genetic screening and perspectives on how the data should be shared and used.
What we did and learned
We used two unique NGS approaches to determine the rates of disease-causing genes present in samples from 211 individuals. Of the panel data processed thus far, we have identified 145 unique variants present within the community. These variants are associated with over 50 disorders (metabolic, endocrine, cardiovascular most commonly), many with available treatment and/or screening modalities available. Our survey indicated that the community is well versed in genetic testing and screening and welcomes this type of work to improve the health of future generations. Over 80% said that this type of screening would help to avoid surprises at birth or during a child’s early life. Almost all (90%) said that it would be helpful for extended family members to be aware of the genetic conditions they may be at risk for and 83% expressed a desire to know their status for conditions that begin in adulthood so they might seek treatment.
Read more about this study
- Published Article: Williams, K. B., Brigatti K. W., Puffenberger E. G., Gonzaga-Jauregui C., Griffin L. B., Martinez E. D., et al. (2019). Homozygosity for a mutation affecting the catalytic domain of tyrosyl-tRNA synthetase (YARS) causes multisystem disease. Hum Mol Genet. 28(4), 525-538. [PMCID: PMC6360277]
- Nemours Press Release
- Published Article: Demczko MM. A Wave. JAMA. 2019;322(9):815–816. doi:10.1001/jama.2019.12599
Study Team
Michele Lobo, UD (PI); Roberta Golinkoff, UD (Co-I); Matthew K Hoffman, Christiana Care (Co-I), Paul David, Christiana Care (Co-I)
What we wanted to learn and why it matters
One in ten infants born in the USA is born preterm before 37 weeks of gestation and 50% of those will have a delay of some kind often requiring intervention by the time these children are of school age. One challenge that families and medical providers face is trying to understand early on, even in just the first few months of life, how we can act to counteract those delays. This study developed a new program called the Baby Play Intervention to teach parents strategies to position, hold, and play with their babies in the first months of life in ways that aimed to promote early development and learning. Helping parents to better understand what they can do to support their child’s development is one way to provide a family-friendly and affordable intervention which can help give children and caregivers from all backgrounds the information they need to support their child.
What we did and what we learned
We worked with 20 infants and their families to see the effects of the Baby Play Intervention. We found that it did change the way parents interacted with their children in ways expected to promote child development. We also developed a smart garment that can accurately provide information about how parents handle and position their infants. Understanding these practices can help us shape them to improve children’s outcomes.
Read more about this study
- Greenspan, B., Cunha, A.B., & Lobo, M.A. (in press). Design and validation of a smart garment to measure positioning practices of parents with young infants. Infant Behavior and Development, Special Issue Methodological Advances in the Characterization and Understanding of Caregiver-Infant Interactions.
- https://sites.udel.edu/move2learn/current-projects/
Year 4
Study Team
Erica Sood, Nemours (PI); Erin Riegel, Mended Little Hearts of Delaware; Allison Karpyn, UD (Co-I); Abigail C Demianczyk, Childrens Hospital of Philadelphia (Co-I); Amanda Shillingford, Nemours (Co-I); Anne E Kazak, Nemours (Mentor); Colette Gramszlo, Nemours (Mentor)
What we wanted to learn and why it matters
The goal of this study was to understand the types of emotional stress parents feel and the kinds of supports that parents have and need, when caring for a young child diagnosed with Congenital Heart Disease (CHD). CHD is the most common birth defect in the world and 9 in every 1,000 children are born with it. Children often require surgery and many doctor and hospital visits which can place substantial stress on caregivers. The results of this study are important because they will be used to develop new psychological interventions at Nemours, make new recommendations for how doctors and other staff speak to patients and their parents, and help to create new support group strategies to help parents maintain their own mental health.
What we did and learned
The study asked 79 caregivers to anonymously use a private social networking site to respond to a series of open-ended questions which asked about their experiences and needs related to caring for their children and themselves while their child was hospitalized or receiving care for CHD. The study found that the way that hospitals communicate information, where and when, makes a big difference for parent stress. For example, parents need care instructions related to discharge not in the hours right before discharge but sooner, so they have time to think about the process, how to set up their home to care for the child, and time to ask any questions. Parents also shared important information about how the condition impacts their expectations as parents, and what the hospital could do to help allow them to still feel like an active parent, even though the child requires so much support from the health care system. Parents want to establish a bond with their baby, they want to be a clear parent to the child in terms of “normal” parenting decisions, and they also need support to cope with their fears and uncertainties for their child’s development.
Read more about this study
- Published Article: Supporting parenting during infant hospitalisation for CHD
- Published Article: Sood, E., Karpyn, A., Demianczyk, A. C., Ryan, J., Delaplane, E. A., Neely, T., Frazier, A. H., & Kazak, A. E. (2018). Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: Recommendations for Pediatric Critical Care. Pediatric critical care medicine. 19(7), 626–634. https://doi.org/10.1097/PCC.0000000000001528.
- Gramszlo C, Karpyn A, Demianczyk AC, Shillingford A, Riegel E, Kazak AE, Sood E. Parent Perspectives on Family-Based Psychosocial Interventions for Congenital Heart Disease. J Pediatr. 2020 Jan;216:51-57.e2. doi: 10.1016/j.jpeds.2019.09.059. Epub 2019 Nov 14. PMID: 31735417; PMCID: PMC6917908.
Study Team
Dominique (Medaglio) Comer, ChristianaCare (PI); Daniel Elliott ChristianaCare (Mentor)
What we wanted to learn and why it matters
Patients’ medication adherence is critical for effective chronic disease management. Poor medication adherence can have severe consequences for patients’ health outcomes and costs. While many studies have examined how patients take medications once they have them (secondary adherence), few have studied the reasons why patients do not fill initial prescriptions (primary adherence). Understanding and being able better identify patients with primary and secondary nonadherence is critical to developing programs that can improve adherence and health outcomes and reduce costs. To these ends, our study examined rates of primary and secondary adherence among about 2,000 ChristianaCare patients with ischemic heart disease.
What we did and learned
We linked pharmacy claims data to the electronic prescriptions of patients with ischemic heart disease, examined primary and secondary nonadherence rates and developed risk prediction models for non-adherence.
Read more about this study
- Medaglio D, Glasgow J, Zhang Z, Elliott D. Noninitiation of Discharge Medications After Revascularization. J Manag Care Spec Pharm. 2020 Mar;26(3):305-310. doi: 10.18553/jmcp.2020.26.3.305.
Study Team
Cynthia Dodds (PI), Diane Gallaher, Executive Director of HMS School for Children with Cerebral Palsy (CI), Marianna Gellert-Jones, MUSC (CI), Carolyn Jenkins, MUSC (Mentor)
What we wanted to learn and why it matters
The number of children with severe brain damage and complex disabilities is increasing. Having appropriate tools to identify and measure the subtle abilities and behaviors of children with severe brain damage is important for improving patient care, education and quality of life. Nonetheless, there are few measurement tools to assess cognitive awareness and sensory motor capabilities of children with severe brain damage. To address this need, our academic-community partnership, comprised of researchers at the Medical University of South Carolina and community stakeholders at HMS School, improved and validated the Pediatric Awareness and Sensory Motor Assessment and translated it into clinical use. In addition, the Pediatric Awareness and Sensory Motor Assessment is being validated against heart rate variability, which may serve as a non-invasion physiological marker to sensory stimulation in children with severe brain injury and complex disabilities. Collective information gathered from the Pediatric Awareness and Sensory Motor Assessment and heart rate variability values may improve examination and treatment of children with severe brain injury and complex disabilities.
What we did and learned
To date, children with severe brain injury and complex disabilities who obtain high scores on the Pediatric Awareness and Sensory Motor Assessment may be in inappropriate learning settings.
Analyses to identify physiological response to sensory domains within the Pediatric Awareness and Sensory Motor Assessment continue to be analyzed.
We hope to:
- descript the heart rate variability in children with severe brain damage and complex disabilities,
- identify sensory response that are sympathetic and parasympathetic in nature for children with severe brain damage and complex disabilities, and
- refine the Pediatric Awareness and Sensory Motor Assessment
Year 3
Study Team
Deepak Kumar, MUSC (PI); Frank Treiber, South Carolina Center of Economic Excellence Technology Applications Center for Healthful Lifestyles (Mentor); Kurt Manal, UD (Co-I).
What we wanted to learn and why it matters
Walking disability contributes to higher risk of early death in people with knee osteoarthritis. Walking is an essential part of osteoarthritis self-management; however, there is a need for low-cost, community-based programs that can increase and sustain walking among people with osteoarthritis. Our research created an integrated mobile health program to promote ChiWalking® a mindful walking program. We examined user-experience and motion outcomes of our mobile mindful walking program.
Study Team
Allison Karpyn, University of Delaware (PI); Michael Allen, Brandywine Zoo (Co-I)
What we wanted to learn and why it matters
Concession stands are notoriously places where less healthy, high salt, sugar and fat products are offered for sale. While work has been done nationally to help improve the products sold and marketed to children and families in venues like workplaces and schools, little attention has been given to zoos and parks, despite their appeal to children. This study worked with the Brandywine Zoo to test an animal-focused marketing campaign on menu boards at the concession stand, while simultaneously working with the zoo to test consumer receptivity to healthier concession products.
What we did and learned
We learned that items such as bananas, water as well as small packs of nuts and yogurt were well received by customers. We also found that there was a significant increase in healthy food purchases if an animal character icon (Tastimal) was placed next to the item on the menuboard. The study was later expanded and served as the basis for 2 more studies including one funded by the USDA.
Read more about this study
- https://www.cehd.udel.edu/zoo-program-to-model-healthy-eating/
- Karpyn, A., Allen, M., Marks, S., Filion, N., Humphrey, D., Ye, A., May, H., & Gardner, M. P. (2017). Pairing Animal Cartoon Characters With Produce Stimulates Selection Among Child Zoo Visitors. Health Education & Behavior, 44(4), 581–589. https://doi.org/10.1177/1090198116679359
- Karpyn, A., Sawyer-Morris, G., Grajeda, S., Tilley, K., & Wolgast, H. (2020). Impact of Animal Characters at a Zoo Concession Stand on Healthy Food Sales. Journal of nutrition education and behavior, 52(1), 80–86.
Year 2
Study Team
Steven Martin, Center for Drug and Health Studies, UD (PI); Elizabeth Dubravcic, Tobacco Prevention and Control Program at DHSS/DPH (Co-I); Eileen Sparling Center for Disability Studies, UDel (Co-I); Mia Papas, ChristianaCare (Mentor)
What we wanted to learn and why it matters
The Youth Tobacco Survey (YTS) is routinely administered in Delaware schools to monitor the prevalence of youth tobacco use and help guide the design, implementation and evaluation of prevention and risk reduction programs. This survey does not collect information specific to youth with disabilities. In partnership with the Delaware DHSS/DPH Tobacco Prevention and Control Program, the Developmental Disabilities Council and the IMPACT Tobacco Coalition we assessed whether accommodations or modifications were needed to facilitate participation in the YTS among students with disabilities. We examined the types of accommodations and modifications needed and their implications for comprehension, completion rates and the overall validity and reliability.
What we did and learned
We established an Advisory Panel of students, parents, teachers, school administrators, health professionals, and staff from partner state and federal agencies. We conducted classroom observations, interviews, and student focus groups to identify the need for accommodations and promising alternative accommodations for the YTS. With our Advisory Panel we developed a pilot YTS survey and protocol that responded to research findings. We field tested the adapted YTS with students' special education programs in three schools. We developed a report outlining study findings, lessons learned and implications for the inclusion of special education students in future administrations of the YTS and other surveys in Delaware.