MU PCOR-funded research proposals for pilot projects with patient-centered outcomes are listed on this page. Potential investigators met with our Patient Advisory Board to receive feedback from patients for areas such as patient impressions of research agendas, suggestions to enhance recruitment and participation, reviews of recruitment or patient information materials.
Proposals were reviewed and based on reviewer comments and their adherence to patient-centered outcomes research agendas, research awards of up to $20,000 were funded. These Small Project Awards were intended to assist investigators in conducting pilot project research and to foster the potential for larger research projects. Funded investigators presented study results at a PCOR Seminar and to the MU PCOR Patient Advisory Board.
December 2017: The Validation and Contradiction of Patientsʹ Pain Beliefs.
Erin Dannecker, PhD, Associate Professor at the Department of Physical Therapy
December 2017: Biomarker Predictors of Outcome in Vascular Surgery.
Jonathan Bath, MD, Assistant Director, Department of Surgery, Division of Vascular Surgery
This study explored occurrences of perceived validation and contradiction and the impact of validation and contradiction on change in pain beliefs, emotion, and pain. Investigators will determine if changes in patients’ preexisting pain beliefs, emotions and pain from before watching an educational video to after watching the video correlate with perceptions of validation and contradiction.
Abdominal aortic aneurysm (AAA) are a relatively common and life-threatening emergency with a high readmission and mortality rate. For both ruptured and unruptured aneurysms, there is no reliable biologic marker to indicate which patients are at high risk of poor outcome following surgery. Moreover, for unruptured aneurysms, no reliable biologic markers exist that predict the risk for rupture. Although the mechanism is not yet defined, neutrophil-lymphocyte ratio (NLR), a marker of inflammatory processes, has shown promise as a predictor of surgical outcomes for AAA. This study examined the association between NLR and AAA outcomes in a large database comprised of data from electronic health records. This study evaluated the association of the neutrophil-lymphocyte ratio (NLR) with outcomes following aortic aneurysm repair using Cerner Health Facts data.
December 2017: Integrating Tobacco Use Treatment into Cancer Care: A Shared Decision-making Approach.
Kevin D. Everett, PhD, Associate Professor, Department of Family and Community Medicine
The project used a series of focus groups and semi-structured interviews with key stakeholders resulting in the following outcomes: 1) A detailed clinical workflow mapping delineating all possible points of interaction/care with patients diagnosed with head, neck, oral, throat, and lung cancers, 2) A shared decision making framework for discussing tobacco use treatment and 3) Decision aids that assist patients in making tobacco use treatment choices.
December 2017: Patient-Centered Application Development to Assist Older Adults in Adjusting to Hearing Aids.
Kari R. Lane, PhD, RN. Assistant Professor, Sinclair School of Nursing
Dr. Lane developed a functional, web-based version of the HEAR intervention using patient-centered research techniques. The overall aim was to investigate older adult preferences in the development of the Hearing Aid Adjustment and Readjustment (HEAR) application. This research centered on three specific research questions: 1) do human-computer interaction principles ease the load on the user, 2) can the HEAR app be used by anyone, anywhere (i.e., universal design), 3) can the design of the web app support collaboration between the patient, the family, and the audiologist (care provider)?
December 2017: Engaging patients to optimize medication adherence.
LeeAnne B. Sherwin, PhD, MS, FNP-BC, Assistant Professor, Sinclair School of Nursing
The overall goal of this study was to determine those factors that facilitate or limit adherence to rifaximin treatment in adults with IBS. A secondary goal was to assess whether adherence level is associated with the need for re-treatment within 3 months of initial treatment. The specific aims included, 1. describe the level of rifaximin adherence in adults with IBS, 2. describe the factors associated with rifaximin adherence, 3. determine the salient facilitators and barriers to rifaximin adherence, and 4. describe the re-treatment rate within 3 months post initial treatment as associated with adherence level.
December 2017: Exploring the Medical Maximizer-Minimizer Scale as a Tool for Facilitating Patient-Provider Communication.
Laura D. Scherer, PhD, Assistant Professor, Department of Psychological Sciences and Katie Murray, MD, Department of Surgery, Division of Urology
Drs. Sherer and Murray explored use of the Medical Maximizer-Minimizer Scale (MMS) in a clinic setting to facilitative patient-physician communication. Aim 1: testing the feasibility of using the MMS to support patient preferences and its influence on patient satisfaction in a clinic setting. In Aim 2 they further established the association between patient MMS scores and healthcare utilization to determine if MMS scores correlate with number of physician visits, medications prescribed or laboratory and radiology testing performed.
December 2017: Sensemaking in the Patient with Diabetes and Patient-Provider Communication: An Exploration of Patient and Provider Perspectives.
Laurel Despins, PhD, RN, Principal Investigator, Assistant Professor, Sinclair School of Nursing
In this study, Dr. Despins described how patients make sense of blood glucose data that is presented to them, the influences on their actions, and the health information that they would communicate to the provider using a sensemaking framework. Sensemaking is defined as the way individuals make sense of their environments and events, create mental models of these events, and use these models to guide their actions. She used a conceptual model drawn from the Sensemaking Framework in Diabetes Self-Management that describes the self-management activities of individuals diagnosed with diabetes.
December, 2017: Using Behavioral Economics to Improve Discussions about End-of-life Care: ‘Nudging’ Primary Care Providers with EHR Prompts for Better Advance Care Planning with the Seriously Ill (the PACT intervention).
Victoria A. Shaffer, PhD, Associate Professor, Department of Psychological Sciences
The specific objectives of this research were to 1) To examine the feasibility of a ‘nudge’ in the EMR to identify patients with serious chronic illness appropriate for advance care planning discussions; 2) To evaluate the impact of this prompt on the initiation and quality of conversations about end-of-life care.
November, 2017: Reframing life with HIV: Resilience-based messages to promote medication adherence among young men of color living with HIV.
Michelle Teti, Dr., PH, MPH, Associate Professor, Department of Health Sciences, School of Health Professions
Young men who have sex with men (MSM) represent more new HIV infections than any other ethnicity/age/gender subgroup [1]. They also report disproportionately low HIV medication adherence rates when compared to other populations living with HIV. The specific aims of the research included: 1. Identify young MSM of color's challenges, but also their resources and strengths, to adhere to HIV treatment and 2. Use men's input, images and stories to craft adherence messages to better promote HIV treatment adherence among this group.
November, 2017: Transitions in Care(giving): Caregivers’ Perspectives on Training and Support in the Post-Acute Care Setting.
Jo-Ana D. Chase, PhD, APRN-BC, Assistant Professor, Sinclair School of Nursing
Dr. Chase conducted a qualitative descriptive study, interviewing caregivers of older adults who received home health care services following hospitalizations. She addressed the research gap in understanding what types of caregiver training and support are needed and preferred strategies for engaging and preparing caregivers during and after care transitions. Aim 1 was to Explore CGs’ experiences in caring for an older adult who transitioned from hospital to home with post-acute home health care services. Aim 2 was to describe caregivers experiences receiving training and support from clinicians across care transitions.
November, 2017: Assessing and Promoting Health-Related Independence in Youth with Autism Spectrum Disorder.
Nancy Cheak-Zamora, PhD, MA, Assistant Professor, Department of Health Sciences
This study (Aim 1) explored differences and needs of young adults with Autism Spectrum Disorders (ASD) and developed protocols that promote young adult ASD engagement and research participation., (Aim 2) developed a health-related independence (HRI) measure that promotes independence and (Aim 3) developed a measure that allows practitioners, families and young adult ASD to examine and improve the young adult ASD’s independence in multiple settings.
October, 2017: Understanding the Palliative Care Needs of Patients with Amyotrophic Lateral Sclerosis and Their Family Caregivers
Raghav Govindarajan, MD, Assistant Professor, Department of Neurology and Karla T. Washington, PhD, LCSW, Assistant Professor, Department of Family and Community Medicine
The purpose of this patient-centered, mixed methods study was to describe and identify the unmet biopsychosocial and spiritual needs of both ALS patients and the family caregivers (by interviewing patients, family caregivers, and healthcare professionals) as well as to explore the preexisting perceptions that patients, family caregivers, and healthcare professionals have about palliative care. In addition, through stakeholder engagement, this study served as the preliminary and essential step to assess the requirements for effective integration of palliative care into ALS multidisciplinary clinics, creating the groundwork for a bigger outcomes-based research program to measure improvement in quality of life and other patient- and family-centered outcomes after integration of palliative care.
October, 2017: Can Youth Health Coaches Improve Family Member’s Self-efficacy and Global Health? Can Being a Youth Health Coach Improve Youth’s Feelings of Meaning and Purpose in Life?
Sonal Patil, MD, MSPH, Assistant Professor, Department of Family and Community Medicine
The objectives of this study were to design a multisite evaluation of a youth health coach program on patient-reported outcomes and to study the correlation between improvement in patient-reported outcomes and diabetes control. The study utilized the Stanford Youth Diabetes Coach program implementation. The study had three aims:
- Aim1: Estimate the effect of youth diabetes coaches on diabetic family member’s self-efficacy for managing medications and treatments, and global health including persistence at 6 months
- Aim 2: Estimate change in the sense of meaning and purpose in participating high school students using validated Pediatric questionnaire.
- Aim 3: Determine perceptions of benefits or challenges of affected family member’s after participating in Youth health coach program.
September, 2017: Virtual Reality Behavioral Skills Training for Behavioral Intervention with Individuals with Autism Spectrum Disorders
Casey Clay, PhD, BCBA-D, LBA, Visiting Assistant Professor, MU Thompson Center for Autism
The study aimed to reduce caregiver-identified problem behavior for individuals with ASD through a VR training program. The investigators collected pilot data on training of college students preparing to work with individuals with autism to determine efficacy of VR training context. Additionally, they conducted focus groups of parents of individuals with ASD to identify common behavioral problems to be targeted in VR training. The developed training focused on the assessment and intervention of these identified behavior problems. After collecting baseline and training data, a multiple-baseline design was utilized to determine efficacy of BST involving VR. Furthermore, data on pre- and post- application of skills to reduce commonly identified problem behavior was collected and analyzed. This pilot data has been used to improve the intervention and provide support for a larger experimental study with the inclusion of training parents and caregivers of children with ASD.
September, 2017: A Virtual Reality Program to Optimize Adherence to Home Exercise Programs in Persons with Chronic Stroke
Rachel Proffitt, OTD, OTR/L, Assistant Professor, Department of Occupational Therapy
This study determined the most effective combination of positive feedback in Mystic Isle (a virtual reality program designed to support home exercise) and virtual coaching in improving adherence to a home exercise program for people with chronic stroke. This was a three-arm randomized pilot trial with a time-wise assessment of adherence and pre-post assessment of patient-centered outcomes (quality of life and occupational performance). All participants and their caregivers participate in natural, in-home observations of game play and semi-structured interviews during the study to explore acceptability and feasibility of delivering the intervention in the home. One stakeholder with chronic stroke serves as an adviser for the research team throughout the process. The end-result of this study was the creation of an optimized intervention to be studied in a larger, pilot randomized clinical trial: Mystic Isle: Stroke.
January, 2017: A Digital Storytelling Intervention for Bereaved Family Caregivers of Cancer Patients
Abigail Rolbiecki, PhD, MSW, MPH, Postdoctoral Fellow, and Karla Washington, PhD, MSW, Assistant Professor of Family and Community Medicine at the University of Missouri
This study examined the experiences of bereaved family members of cancer patients, including those who have experienced the death of a child. Bereaved caregivers often disregard their grieving as a way to protect themselves from the pain of losing a loved one, however, this type of silence discourages bereaved caregivers from acknowledging their mourning, putting them at greater risk for poor psychological functioning. This exploratory study examined the feasibility of a digital storytelling intervention for bereaved caregivers of adult and pediatric cancer patients, their perception of this approach in ameliorating symptoms of depression, anxiety and complicated grief and assessed the effect of digital storytelling on their self-efficacy to communicate grief and make meaning of their loss.
January, 2017: Understanding Decisional Conflict in Families of Children and Adolescents with Sickle Cell Disease: Should We Choose Hematopoietic Cell Transplant?
Ginny Schulz, MSN, RN, CPNP; PhD candidate and Jane Armer, PhD, RN, FAAN, Professor, MU Sinclair School of Nursing and Director of Nursing Research at Ellis Fischel Cancer Center, University of Missouri
Currently hematopoietic cell transplantation (HCT) is the only curative treatment option for Sickle Cell Disease (SCD). Pediatric patients with SCD and their families face uncertainty and risk when deciding whether to pursue HCT. Decisional conflict can lead to delayed decision-making, and ultimately impact their health outcomes; as age at the time of HCT, increased morbidity with SCD progression, and donor availability are temporal factors which can influence HCT outcomes. The primary aim of this study was to describe the level and source of decisional conflict in children and adolescents with SCD, their sibling donor and their parents, when HCT is offered as a curative treatment option. A secondary aim of this study was to describe the contribution of the child and adolescent with SCD in the decision-making process of whether or not to proceed with HCT as a curative treatment option.
November, 2016: Reducing Exposure to Secondhand Smoke in the Homes of Pre-term Infants
Dasi Schlup, MSW, LCSW, Clinical Social Worker, Case Management, practitioner in Newborn Intensive Care Unit, Children’s Hospital, University of Missouri Health Care; Kevin D. Everett, PhD, Associate Professor, Family and Community Medicine
Preterm infants, who have already spent initial weeks of life in the Neonatal Intensive Care Unit (NICU), are at a higher risk of re-hospitalization when exposed to Respiratory Syncytial Virus (RSV) due to a variety of factors that affect lung function. A significant risk factor for these infants in the first year of life is exposure to smoking. This study examined changes in behaviors and attitudes about secondhand and third-hand smoke exposures of parents with infants in the NICU and represents a first step in changing smoking behaviors of parents by focusing on the negative impact of second and third hand smoke on health. Eliminating exposure to secondhand smoke in post NICU infants’ home environments removes a major factor for health problems that lead to illness and re-hospitalizations.
June, 2016: 3D Body Appreciation Mapping (BAM): A pilot study of an innovative patient-driven body image/skin tone and health intervention for emerging adult women
Virginia Ramseyer Winter PhD, MSW, Assistant Professor, School of Social Work; Antoinette Landor, Assistant Professor, Human Development and Family Science; Kristen Morris, Assistant Professor, Textile and Apparel Management; Michelle Teti, Assistant Professor, School of Health Professions
Studies show that women’s poor body image is associated with negative physical, mental and sexual health behaviors. Dr. Ramseyer Winter’s project involved an intervention designed to improve participants poor body image and body dissatisfaction. The intervention used 3D scanning technology for participants to map their body and will develop aims to improve their body image. Participants were followed to determine the impact of the intervention on their body image and current and future health behaviors.
February 2016: Take a Deep Breath: Randomized controlled trial of the effects of pranayama breathing on blood pressure
Jane McElroy, PhD, Associate Professor and environmental epidemiologist Department of Family and Community Medicine and Shamita Misra, MD, Associate Clinical Professor, Department of Family and Community Medicine
This study determined the influence of pranayama breathing interventions on patient’s baseline and post intervention systolic (SBP) and/or diastolic blood pressure (DBP. Seventy-five patients diagnosed with uncontrolled hypertension participated in a randomized controlled trial study design of pranayama breathing, with patient’s practicing at least 5 times per week with a 1-month and 3-month follow-up. The study also evaluated the effectiveness of in-class versus DVD/YouTube-delivered instruction and practice.
November 2015: Patient-Centered Technology to Support Breastfeeding
Urmeka T. Jefferson, PhD, Assistant Professor, Sinclair School of Nursing, University of Missouri
Despite the known health benefits of breast milk, low breastfeeding rates persist for women with the highest risk factors for poor outcomes with African American, young, rural and low income women least likely to initiate and continue breastfeeding. This disparity is a significant public health concern considering the impact of breastfeeding on infant morbidity and mortality. The overall goal of this project was to explore culturally appropriate, patient-centered technology that supported breastfeeding patients after discharge home from the hospital.
The descriptive mixed methods study utilized tailored education, daily feeding logs, peer support, and virtual consultations to engage patients in the use of a mobile web-based intervention to support breastfeeding. This research contributed to nursing practice by incorporating easy to access technology to support breastfeeding helping women make an informed decision and met their breastfeeding goals.
September 2015: The Unfulfilled PROMIS of Pain Intensity
Principal Investigator: Erin Dannecker, PhD, Associate Professor at the Department of Physical Therapy, University of Missouri
A potential resource for improving pain assessment is the Patient-Reported Outcomes Measurement Information System (PROMIS), which was developed by the National Institutes of Health. PROMIS developed measures of multiple domains and advocates that the domain of pain should be measured through the subdomains of pain intensity, pain interference, pain quality, and pain behavior. PROMIS has not tested items measuring the pain intensity of physical activities, which is surprising considering that legacy measures assess it and it is widely relevant and important for diagnosis, prognosis, and exercise adherence.
This research engaged patients (1) to compare variability and confidence in HCPs’ interpretation of scores on different pain intensity items and (2) to determine the psychometric properties of general and physical activity-related pain intensity items, the latter of which we developed.
September 2015: The Effectiveness of an Interactive Theatre Intervention on Improving Adherence to Self-Management Regimens for Breast Cancer-Related Lymphedema (BCRL)
Principal Investigator: Jane Armer, Phd, RN, FAAN, Professor, MU Sinclair School of Nursing
Co-Investigator: Pamela Ostby, Phd©, RN, OCN, Graduate Student, MU Sinclair School of Nursing
As a result of increasing numbers of cancer survivors and limited time with health care providers, patients are becoming more responsible for self-management of chronic illness. The purpose of this study was to compare the impact of a bundled interactive theatre intervention (ITT and printed information about lymphedema) with printed information alone to determine patient’s adherence to self-management regimens for BCRL and perceptions of self-efficacy and self-regulation.
April 2015: Evaluating ‘Eat Healthy, Stay Active!’ A Multi-Level, Community Based Head Start Program to Decrease Childhood Obesity
Principal Investigator, Amy Braddock MD, Assistant Professor, Department of Family and Community Medicine, University of Missouri
Designed at the University of California-Los Angeles, Eat Healthy, Stay Active! (EHSA) is a multi-level, obesity prevention program that includes Head Start children, parents, and staff as well as medical students. EHSA was piloted in Columbia, MO in 2013. The primary purpose of this qualitative study was to evaluate whether the concerns and behaviors addressed in EHSA actually fit with parents’ goals and concerns. Secondarily, Dr. Braddock assessed the perspectives of medical students and the Head Start staff on the sustainability and effectiveness of the EHSA program and determine what major health outcomes participants are most concerned about and how to incorporate these outcomes in the next intervention for effective behavioral change.
July 2014: Seniors on the Move
Principal Investigator, Lorraine Phillips, PhD, Associate Professor, Sinclair School of Nursing, University of Missouri
Older adults who engage in regular physical activity (PA) have better physical function and less disability, yet evidence suggests that the vast majority do not meet national PA guidelines. Most assisted living (AL) communities offer only nontherapeutic chair exercises that do not target the common deficits in walking, strength, and balance that contribute to disability in activities of daily living (ADLs). These deficits in lower extremity function that threaten older adults’ independence could be reduced with regular, progressively challenging exercise that targets the underlying causes of their mobility limitation. This study addressed these issues by working with personnel and patients to create programs designed to expand senior mobility.
August 2014: Developing a patient decision aid for older adults with basal cell carcinoma (BCC)
Dr. Victoria Shaffer, PhD, Assistant Professor, Health Sciences, University of Missouri
Dr. Shaffer identified a need for improving patient-centered outcomes associated with the treatment of Basal Cell Carcinoma (BCC), by facilitating shared decision-making between dermatologists and patients 65 years and older. Some patients age 65 and older may not experience complications from malignant tissue growth prior to end of life because of slow growth of BCC. This funding supported the development of a decision support tool that has been used to 1) educate patients about the treatments for BCC, 2) inform patients about the risks and benefits of the treatments, and 3) provide information about patient experiences with each of these treatments.
