The purpose of this patient-centered, mixed methods study is 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 seeks to serve as the preliminary and essential step to assess the requirements for effective integration of palliative care into ALS multidisciplinary clinics, in hopes of creating the groundwork for a bigger outcomes-based research program which would measure improvement in quality of life and other patient- and family-centered outcomes after integration of palliative care.
The objectives of this study are 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 will utilize the Stanford Youth Diabetes Coach program implementation. The proposed study has three aims:
The study aims to reduce caregiver-identified problem behavior for individuals with ASD through a VR training program. The investigators will collect pilot data on training of college students preparing to work with individuals with autism to determine efficacy of VR training context. Additionally, they will conduct focus groups of parents of individuals with ASD to identify common behavioral problems to be targeted in VR training. The developed training will focus on the assessment and intervention of these identified behavior problems. After collecting baseline and training data, a multiple-baseline design will be utilized to determine efficacy of BST involving VR. Furthermore, data on pre- and post- application of skills to reduce commonly identified problem behavior will be collected and analyzed. This pilot data will be 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.
This study will determine 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 is 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 will be the creation of an optimized intervention to be studied in a larger, pilot randomized clinical trial: Mystic Isle: Stroke.
This study will examine 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 will examine 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 assess the effect of digital storytelling on their self-efficacy to communicate grief and make meaning of their loss.
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 will be 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 is 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.
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 will examine 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.
Studies show that women’s poor body image is associated with negative physical, mental and sexual health behaviors. Dr. Ramseyer Winter’s project involves an intervention designed to improve participants poor body image and body dissatisfaction. The intervention will use 3D scanning technology for participants to map their body and will develop aims to improve their body image. Participants will be followed to determine the impact of the intervention on their body image and current and future health behaviors.
This study will determine 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 will participate 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 will also evaluate the effectiveness of in-class versus DVD/YouTube-delivered instruction and practice.
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 is to explore culturally appropriate, patient-centered technology that support breastfeeding patients after discharge home from the hospital.
The proposed descriptive mixed methods study will utilize 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 will contribute to nursing practice by incorporating easy to access technology to support breastfeeding helping women make an informed decision and met their breastfeeding goals.
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 initial proposal will propel this line of research by engaging with 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 will develop. This research is needed to better understand the pain intensity subdomain and to develop improved measures of it in order for PROMIS to advance pain management. Our long-term objective is to improve computerized pain assessment applications so they are clinically useful for shared decision-making by patients, caregivers, and HCPs for self- and medical management of pain.
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 is 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. The current standard of care for breast cancer-related lymphedema (BCRL) education and support is to provide printed information; however, information is not standardized and does not address the supportive component needed to enhance adherence to self-management. Timing of information also varies; this often occurs at the time of BCRL diagnosis, denying patients risk prevention guidelines and possibly earlier detection of BCRL.
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 is to evaluate whether the concerns and behaviors addressed in EHSA actually fit with parents’ goals and concerns. Secondarily, Dr. Williams will assess 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.
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 will address these issues by working with personnel and patients to create programs designed to expand senior mobility.
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 supports the development of a decision support tool that will be 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. Building on preliminary work in progress, the Specific Aim of this proposal is to construct a patient decision aid for the treatment of BCC of the head and neck in patients 65 years or older.
"PCOR investigators engage patients not only as participants but also as advisers in research"
MU PCOR Supported Funding for PCOR and CER Research At Mizzou
Investigators are invited to meet with the MU PCOR Patient Advisory Board to receive patient feedback on their projects. Board members talk about what they do in the video below:
MU PCOR Small Project Awards: 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 are intended to assist investigators in conducting pilot project research and to foster the potential for larger research projects. Funded investigators are expected to present study results at a PCOR Seminar and to the MU PCOR Patient Advisory Board. For information about Small Project Awards, contact Dr. David Mehr or Dr. Robin Kruse.