Currently Funded Research
Cancer Caregivers Interactions with the Hospice Team: Implications for End of Life and Bereavement Outcomes: Administrative Supplement
Funding: NIH / NINR
Dates: 04/01/2016 - 03/31/2020 In home-based hospice, family caregivers (FCGs) provide 24/7 care, including patient symptom management and emotional support, while simultaneously managing their own distress and the physical demands of caregiving. Advanced cancer hospice patients often face a much more rapid decline than other hospice patients, and as death approaches, both care demands and caregiver stress increase. FCGs of cancer hospice patients frequently report feeling unprepared for their role and express the need for more information and support. When FCG needs go unaddressed, cancer patient care may be compromised and FCG quality of life and emotional well-being are negatively impacted. The hospice care team (HCT) is designed to inform and support families as integral team members, and to provide high quality care and effective communication aligned to meet specific patient and family needs. However, our work and that of others indicate FCGs of hospice cancer patients are reluctant to voice concerns, and HCTs often do not recognize the critical role of FCGs, failing to fully address their concerns. The dynamic change in patient and family needs during care and the response of the entire interdisciplinary team has been largely neglected in research to date. Further, there is little work on the long term impact of hospice care and FCGs’ bereavement adjustment. We propose to address these gaps by evaluating HCTs’ responsiveness in terms of timely alignment to hospice FCGs’ daily needs and assessing the impact of these interactions on FCG outcomes. Leveraging the resources of the Palliative Care Research Cooperative and our team’s previous research experience, we will conduct a multi-site, multi-method prospective longitudinal study in which we systematically monitor the daily fluctuation of FCGs needs. Using an automated telecommunication system, 120 FCGs will rate patient and FCG symptom burden, and FCG anxiety, depression, positive affect, and spiritual wellbeing. We will then use a novel approach to assess HCT responsiveness to these needs, we will analyze ongoing alignment of FCG-HCT communication during home visits and phone calls. Mean level and rate of change of FCG-HCT alignment will be assessed to predict FCG post-patient death outcomes at 2 and 6 months post death, including psychological adjustment, burden, health status, and satisfaction with care. Finally, we propose to capture FCGs’ daily experiences with hospice care through audio diaries to determine how/whether their perceptions map onto objective measures and interpersonal communication patterns with the HCT. Instead of examining the hospice care process through a more traditional lens in a one time-encounter, this project will be the first to assess the complex clinical reality of hospice care by capturing FCG daily needs and the response of each member of the team over the course of care to assess impact on FCG outcomes. The long term goal of this project is to inform future clinical interventions by identifying specific family-centered HCT processes that are linked to improved FCG outcomes.
Pediatric Research using Integrated Sensor Monitoring Systems (PRISMS) Informatics Platform - Federated Integration Architecture
Funding: NIH National Institute of Biomedical Imaging and Bioengineering
Dates: 9/30/2015 – 9/29/2019 The Pediatric Research using Integrated Sensor Monitoring Systems (PRISMS) program is a national NIH initiative to address challenges associated with using sensor systems for research on pediatric asthma and other conditions that are affected by the environment. The Utah PRISMS informatics center uses participatory user-center design methods to develop an information architecture and standardized processes for acquisition, integration, and management of sensor data, integrated with clinical data from longitudinal assessments of asthma symptoms, quality of life, health care usage, and other asthma related outcome metrics. The center has three synergistic and tightly integrated projects that make up an innovative sensor monitoring system: Project 1: A platform to support data acquisition from the child’s home and environment sensors, and to support data processing with user-friendly interfaces for presenting sensor data to families. Project 2: A high-resolution data integration platform, allowing sensor data to be integrated with clinical and other data sources, as well as mechanisms for securely transmitting data to the PRISMS data coordinating center. Project 2 leverages and extends the biomedical informatics infrastructure at the Center for Clinical and Translational Sciences (CCTS), called OpenFUrther (http://openfurther.org/). Project 3: A platform for researchers to configure a variety of experimental designs. These projects will support future studies that will improve our knowledge of the impact of environmental exposures on children with asthma.
Faculty: Katherine Sward (Contact PI); Julio Facelli (PI); Ramkiran Gouripeddi (Project Lead); Neal Patwari (Project Lead); Mollie Cummins; Miriah Meyer (Project Co-lead); Flory Nkoy (Project Co-lead); Bryan Stone; Scott Collingwood; Kerry Kelly; John Horel; Hanseup Kim; Bob Wong
Funding: NIH National Institute of Nursing Research
Dates: 7/1/2013-6/30/2018 This training program addresses the National Institute of Nursing Research’s strategic areas including health promotion and disease prevention; improving quality of life through self-management, symptom management and caregiving; and end-of-life research. The program objectives are 1)To provide outstanding interdisciplinary didactic research training in the fundamental theories, methods, and skills necessary to conduct research in cancer, aging, and end-of-life care; 2)To facilitate the ability of predoctoral and postdoctoral trainees to develop research expertise through ongoing project-oriented research experience in cancer, aging, and end-of-life care that integrates mentoring, practical experiences, feedback, and critique; 3).To prepare postdoctoral trainees for independent academic careers as scientists in cancer, aging, and end-of-life care; and 4) To mentor all trainees in the ethical conduct of research, especially in diverse vulnerable populations, including the elderly and individuals facing serious illness and death.
Funding: U.S. Agency for Healthcare Research & Quality (AHRQ) (1 R01 HS021472-01A1)
Dates: 9/30/2013-9/29/2018 Poisonings are a leading cause of unintentional injury death in the United States. We will develop and evaluate a replicable, standards-based approach to health information exchange between emergency departments and poison control centers. Health information exchange has potential to strengthen continuity of care for poisoned patients, and improve communication and collaboration between emergency departments and poison control centers during disaster scenarios.
Faculty: Mollie Cummins (PI); Barbara Crouch (COI); Guilherme Del Fiol (COI); Tom Greene (Statistician); Scott Narus (PI, Intermountain Health Care Site); Todd Allen (Consultant, Intermountain Health Care)
Advancing Interprofessional Telemedicine Education: A Mixed Methods Analysis of Student Knowledge, Beliefs, and Attitudes
Funding: University of Utah Academy of Health Science Educators
Dates: 6/01/2017 - 12/31/2018 The major aim of this project is to analyze student data using a mixed methods approach. Results will be used to improve course activities and learning modules. Findings will guide future scenario development and enhance the delivery of simulations through TVC technology. Results will be disseminated via publications in journals focused on telemedicine and IPE/IPP. Findings will be shared with colleagues across University of Utah Health Sciences as a catalyst to interpret and publish additional IPE course data.
Faculty: Sue Chase-Cantarini (PI)
Dates: 2/01/2014-11/30/2019 This center provides central data management and statistical resources for the Collaborative Pediatric Critical Care Research Network (CPCCRN); including network data collection, data management and database design, data analysis, IT support, manuscript preparation, network logistics and study project management, and development of public use data sets.
Faculty: Mike Dean (PI); Rich Holobkov (Alternate PI); Katherine Sward (Co-I); Whit Coleman (Program Manager);
Improving Clinical, Behavioral and Psychosocial Type 1 Diabetes Outcomes with an Online Peer Health Intervention: A Pilot Study
Funding: The University of Utah Diabetes and Metabolism Center
Dates: 5/01/2017-4/30/2018 Peer health is defined as the interaction, education, and support offered by peers with the same condition to promote health-enhancing change. Individuals with diabetes find peers helpful by crowdsourcing “the collective wisdom of others” through use of the diabetes online community (DOC). The DOC is a collection of interactive websites that encourages online peer health. Preliminary work suggests high engagement in the DOC is associated with better glycemic levels as well as higher levels of self-care and health-related quality of life, however, causation cannot be determined. The purpose of this research is to evaluate the feasibility and acceptability of an online peer health intervention in adults with type 1 diabetes; and to explore the preliminary efficacy of an online peer health intervention on clinical, behavioral, and psychosocial outcomes compared to usual care controls.
Funding: NIH Eunice Kennedy Shriver National Institute of Child Health and Human Development
Dates: 7/27/2015-6/26/2020 Major risk factors for Pelvic Organ Prolapse (POP), which is experienced by both nulliparous and parous women, include first vaginal childbirth, family history, and age. Some studies find an association with Hispanic heritage. Preventive measures are few and untested, since it is infrequent for women to visit a physician regarding symptoms of a vaginal bulge until the vaginal wall descends to or below the level of the hymen. Little is known about how women become aware of changes in vaginal support, its meaning for them in its interpersonal and sociocultural context, and subjective inklings of onset. The goal of this ethnographic study is to understand the cultural context of early pelvic floor changes, as they are experienced postpartum by Mexican-American and Euro-American women. By understanding how changes are perceived and understood to develop, culturally appropriate information and prevention strategies can be developed for women with early changes in vaginal support after childbearing.
Funding: NIH Eunice Kennedy Shriver National Institute of Child Health and Human Development
Dates: 9/1/2015-5/31/2019 Obtaining adequate informed consent from potential research participants is a significant challenge for biobank-dependent research. To maintain public trust and support, it is important to establish an informed decision-making process for the collection and use of biospecimens collected within clinical settings. For the majority of all infants born in the US, residual dried blood biospecimens are generated after newborn screening is completed. Some programs have chosen to store these specimens for several uses including biomedical research. For example, the Michigan BioTrust retains and catalogs newborn screening residual biospecimens for use in medical and public health research studies. Identifying ways to improve comprehension about broad consent for future biobank-dependent research is a national priority. The purpose of this application is to 1) identify information needed to make an informed decision about consent for future use of residual bloodspot biospecimens; 2) create an electronic informed consent information (EICI) tool for use in the clinical setting; 3) and evaluate the EICI approach and feasibility.
Funding: Agency for Healthcare Research and Quality
Dates: 07/01/2016–06/30/2018 This innovative study will determine whether a relationship exists between labor and delivery nurse staffing and adverse maternal and newborn outcomes. Understanding the link between perinatal nurse staffing and maternal and neonatal wellbeing is fundamental to enhancing outcomes and promoting patient safety in the childbearing family. If the relationships indicate these outcomes are staffing sensitive, it will allow further studies that examine whether manipulating staffing levels can mitigate adverse birth outcomes.
Faculty: Barbara Wilson (PI); Richard Butler (Health Economist and Professor at Brigham Young University); Jean Millar (Women’s and Newborns Service Line Director/Operations Officer for Intermountain Healthcare) ; Kristi Nelson (Program manager for the System in Women’s and Newborn Services, Intermountain Healthcare)
Funding: Primary Children’s Hospital Foundation (PCHF) Early Career Development Research Award
Dates: 7/1/2016 – 6/30/2018 This project proposes to develop a new screening approach for adolescent depression leveraging the potential of social media data. The goal of ASAP is to engage adolescents to self-monitor depressive symptoms, by automatically and periodically analyzing the individual’s posts and providing feedback to the adolescent. The objective of this ASAP proposal is to generate preliminary data essential for developing ASAP, including (1) to build a lexicon dictionary used for analyzing adolescent depression from tests; and (2) to identify social media use behaviors related to adolescent depression.
SymptomCare@Home (SCH): Deconstructing an Effective, Technology-assisted, Symptom Management Intervention
Funding: National Institutes of Health National Cancer Institute
Dates: 04/01/2016–03/31/2021 Cancer patients receiving chemotherapy experience multiple poorly controlled symptoms at home in the interim weeks between clinic visits and the next infusion. Their care during this interim time period is suboptimal. Technology can be utilized to bridge the gap between patient symptom needs at home and oncology team response. Automated patient-reported symptom home monitoring and management systems offer a new approach to symptom care. Our research team has developed and tested SymptomCare@Home (SCH). This multi-component automated system monitors daily patient-reported symptoms at home, provides tailored automated self-management coaching based on the specific symptoms reported and transmits unrelieved symptom alert reports to an oncology provider who, using the SCH decision support system provides follow-up telephone-delivered symptom care.
Faculty: Kathi Mooney (PI)
Funding: National Institutes of Minority Health and Health Disparities
Date: 07/22/2016-02/28/2018 Salud Juntos is a promotora-led home-based cancer care support solution project intended to reduce health disparities by developing medical technologies that are effective, affordable, culturally acceptable, and easily accessible to those who need them. The project is based on the well-established partnership between BrightOutcome and Dr. Ana Maria Lopez, Associate Vice President for Health Equity and Inclusion, University of Utah Health Sciences Center, and Director of Cancer Health Equity, Huntsman Cancer Institute. The research team will co-develop a bilingual high tech and high touch medical care support portal for Latinos, the most rapidly growing group in the U.S. The overarching goal of Salud Juntos is to improve cancer patients’ outcomes and self-efficacy by empowering cancer patients with self-management skills and bringing cancer care support directly to them at home via both promotoras and technology. Such supportive care, regardless whether delivered by promotoras or by technology, addresses both physical and psychosocial concerns and needs of cancer patients by offering timely patient education materials, engaging local/community support resources, facilitating patient-provider communication, and involving patients caregivers, friends and families.
Funding: March of Dimes Foundation
Dates: 05/01/2017 - 12/31/2017 Integrate an algorithm into nurse midwifery and OB/GYN clinical care.
Faculty: Sara Simonsen
Grief Support Groups for Frontier and Rural Utah: a Pilot Study to develop and Evaluate Tele-Health Distance Technology to Provide Grief support and Develop the Bereavement Care Professional Workforce in Utah
Funding: Cambia Health Foundation
Dates: 05/2017-05/2019 This grant will bring partners from Caring Connections: A Hope and Comfort in Grief Program, Community Nursing Services Hospice Services, and Utah Telehealth Network together to develop, implement, and evaluate a distance-technology delivered grief support group program for grieving persons in underserved rural/frontier communities in Utah using trained rural hospice social workers.
Faculty: Katherine Supiano, (PI); Patricia Carroll (Co-I); Deb LaMarche (Co-I); Kim Dansie
Funding: National Alzheimer's Association
Dates: 5/2017 - 5/2020 This project will adapt a proven therapy for complicated grief in bereaved dementia caregivers—Complicated Grief Group Therapy (CGGT)—for soon-to-be bereaved dementia caregivers at risk for complicated grief to promote healthy death preparedness and eventual bereavement—Pre-Loss Group Support (PLGS). First, the death preparedness of both bereaved and soon-to-be bereaved caregivers will be assessed. Second, CGGT will be adapted into PLGS, a 10-session group therapy for soon-to-be bereaved dementia caregivers. Finally, PLGS will be evaluated in 3 partner long term care facilities with caregivers at-risk for complicated grief whose care recipient has a life expectancy of 6 months or less. The partner facilities include the Salt Lake City Veterans Home, Silverado and Hillside Mission Health.
Telehealth Distance Platform for the Delivery of Mental Health Services Can Address Some of the Barriers to Accessing Care for Childbearing Women in Rural and Frontier Utah
Funding: Utah Department of Health
09/01/2017-08/31/2019 Developing and implementing a telehealth distance platform for the delivery of mental health service can address some of the barriers to accessing care for childbearing women in rural and frontier Utah. Telehealth has begun to revolutionize the delivery of services to address a variety of health care needs, but is just beginning to be explored as a platform for the delivery of maternity and mental health services. All pregnant and postpartum women (up to 1 year after birth) receiving services at any of the collaborating public health clinics will be included in a universal screening program to detect depression during and after pregnancy. Women who screen “positive” for depression will be invited to participate in the telemental health program.