Clinical Research Directory

End Diagnostic Overshadowing

The goal of this study is to address the critical issue of diagnostic overshadowing by applying the Collective Impact Model40 to co-produce our End Diagnostic Overshadowing program with academic, health systems, health professional, PWDs, family members, and community stakeholders. Through this work, we will identify and address mechanisms that contribute to diagnostic overshadowing and diagnostic errors among people with disabilities. The main questions to answer are whether knowledge about diagnostic errors and confidence will improve with health care providers and professionals involved in diagnostic provesses, whether developed algorithms to identify patients at risk of diagnpstic error will be used, whether there will be change in time to diagnostic evaluation for PWD from the specified 5 population groups and with the specified diagnoses prone to error, and whether changes in usage of CPT Evaluation and Management codes will occur.

Post-Intensive Care Transitional Care, Rehabilitation, and Family-Support

The goal of this randomized control trial is to test an intervention designed to improve patient and family outcomes after critical illness compared to usual care. The intervention, called Post-Intensive Care Transitions, Rehabilitation and Family Support (PIC-TRFS) combines four elements: (1) health management; (2) rehabilitation; (3) social support; (4) care coordination. All patients and families enrolled in this study will have spent at least 48 hours in an ICU, be at risk for long-term functional impairment, and be discharged home. Although age of the patients will be restricted to those who are at least 50 years old and caregivers must be adults over 18 and all participants must speak English, the study will enroll all sexes, genders, races, and ethnicities. The main questions the study aims to answer are: 1. Compared to usual care, does PIC-TRFS improve patient quality of life at the end of the 6-month intervention period measured via PROMIS-Preferences (PROPr) score? 2. Compared to usual care, does PIC-TRFS improve patient physical, cognitive, and psychological functioning measured via PROMIS Physical, Cognitive, and Depression Computer Adaptive Test (CAT) at 6 and 12 months after discharge? Does it increase the number of days survivors spend alive at home in the 6 and 12 months after discharge? Does it improve patient and family trauma scores and dyadic quality of life, measured via the Impact of Events Scale-Revised and dyadic PROPr score? Participants will: * Complete Run-In assessments of symptoms and function in the hospital; * Be randomized to intervention or control; * Complete assessments of their function and quality of life at 0, 3, 6 and 12 months * Control participants will get a brochure on the Post-Intensive Care syndrome and complete the assessments on the same schedule as those receiving the intervention * Intervention participants will complete tele-health based check-ins providing health management, social support, and care coordination; and telehealth-based rehabilitation sessions focusing on patient functioning.

Reducing COVID-19 Related Disability in Rural Community-Dwelling Older Adults Using Smart Technology

The social distancing requirements for COVID-19 coupled with the adverse health impacts of social isolation and decreased access to healthcare in rural areas places older adults with disabilities in a dire situation. The smart sensor system to be deployed and studied in this project aims to reduce disability for rural community-dwelling older adults and improve health-related quality of life, including depression and anxiety. An implementation guide will be developed to increase success of future scale-up evaluations.

Training on the Heimlich Maneuver for Mothers of Children With Disabilities

Foreign body obstruction is one of the most common causes of medical emergencies, particularly in childhood, and can lead to fatal outcomes if not treated promptly and correctly. Therefore, this study aims to examine the effect of hands-on Heimlich maneuver training for mothers of children with disabilities on the mothers' knowledge, skills, self-efficacy, and anxiety levels. Conducted as a randomized controlled trial, the study is planned to include 70 mothers (experimental group: 35, control group: 35) of children aged 1-8 years attending a private rehabilitation center in the Besni district of Adıyaman. Data collection tools will consist of a demographic information form, a Heimlich maneuver knowledge and skill test, and self-efficacy and anxiety scales. A pilot study will be conducted to evaluate the validity and reliability of the data collection tools, test their comprehensibility for the mothers, and identify potential problems that may arise during implementation. Prior to the start of the training, the knowledge levels of all mothers will be assessed via a questionnaire. The Heimlich maneuver training provided to mothers in the experimental group will be delivered hands-on using a pediatric Heimlich mannequin. One month after the training, a post-test will be administered to the mothers. Mothers in the control group will be informed about the study during the initial interview and will take a pre-test. One month after the training, the mothers will take the post-test. Mothers in the control group will be informed about the study during the initial interview and will take the pre-test. The post-test will be administered one month later, after which the mothers in this group will also receive maneuver training. The mothers' pre-test and post-test scores will be compared both within and between groups.

Pediatric Medication Therapy Management Trial

The purpose of this study is to evaluate whether an intervention called Pediatric Medication Therapy Management (pMTM) improves the identification and management of medication-related problems among children with medical complexity and polypharmacy.

Improving the Health and Social Participation of People With Disabilities From Underrepresented Groups Post COVID

This is a single-arm community-based feasibility study examining recruitment, retention, adherence, and satisfaction with ENGAGE, a community-based intervention designed to address pandemic-related social isolation among people with disabilities. We will also examine preliminary, within-group effects on social participation. The findings of this study will inform a larger trial to examine intervention efficacy.

Characteristics of Injury Claims by Chronic Pain Patients

Chronic pain is associated with injuries and disabilities. This prospective observational study explores the injury or disability claims made by chronic pain patients. It evaluates the socio-demographics of the patient population. It explores the impact of pain clinic services on the patients' injury rehabilitation, insurance claim outcome, and socioeconomic situation.

Disability of People With Fibromyalgia in Poland

Fibromyalgia is a syndrome characterized by chronic, generalized pain in muscles and joints with the presence of characteristic, symmetrically occurring so-called "tender points" - areas of the body that are excessively sensitive to pressure. The condition is associated with a feeling of chronic fatigue, mood and sleep disturbances and a sensation of body stiffness. These complaints are bothersome and significantly impair patients' functioning in every aspect of their lives. There are few studies evaluating the functioning and disability of people with fibromyalgia. No such study has been conducted in Poland to date. Therefore, the purpose of this study is to evaluate the functioning and disability of fibromyalgia patients and the relationship of the level of disability with selected factors, such as pain intensity, emotional state, sleep quality, etc.