Study Area: Supporting Patient and Family Decision Making

Prenatal diagnoses of complex congenital heart disease (cCHD) elicit severe parental psychological distress and are associated with decreased physical and mental health for both parents and their children. Parents who report encountering more uncertainties surrounding illness report greater psychological distress. How fetal cardiology teams discuss and support families regarding uncertainties may mitigate parental psychological distress. … Read more

This study seeks to describe the emotional well-being of family caregivers of children with medical complexity (CMC) using Patient-Reported Outcomes Measurement Information System (PROMIS) instruments. The research team aims to assess global mental health, symptoms of anxiety, depression, and anger, levels of fatigue and sleep-related impairment, and self-efficacy, ability to control one’s emotions, and sense … Read more

Dr. Harris’s research focuses on optimizing clinician-parent communication during prenatal diagnosis of complex congenital heart disease (cCHD). She previously conducted a longitudinal qualitative study to understand parental experiences after prenatal cCHD diagnosis. This study investigates the communication that occurs between fetal cardiology clinicians and parents at the time of diagnosis through qualitative analysis of observational … Read more

In this mixed methods study, Dr. Thomas explored how men with cancer overcome challenges they encounter during their cancer experience. Using individual in-depth interviews along with a large national observational study, this study used complementary qualitative and quantitative data to define key self-advocacy behaviors and revise existing measures that were developed in women. Patients were … Read more

In this trial, Dr. Thomas will evaluate the efficacy of a serious game to teach women newly diagnosed with advanced gynecologic or metastatic breast cancer self-advocacy skills. Research participants will enroll from across the UPMC Hillman Cancer Center network. (Funding Source: NIH/NCI Grant R37CA262025) Publications What are We Asking Patients to Do? A Critical Ethical … Read more

Dr. Amar Bansal is a site PI for this multi-center randomized trial led by Boston Medical Center. The study focuses on the use of a video decision aid and video declaration process for older patients with chronic kidney disease. The study provides patients the opportunity to video record their medical goals and personal goals for … Read more

Dr. Amar Bansal is the site PI for this multi-center randomized clinical trial with University of Wisconsin-Madison. This study will evaluate “Best Case/Worst Case” (BC/WC), a communication tool for nephrologists to discuss dialysis decisions with older adults who have kidney disease. (Funding Source: NIH/NIA Grant R01AG065365) Publications Protocol: Best Case/Worst Case: protocol for a multisite … Read more

Dr. Yael Schenker leads this single-blind, mixed-methods comparative effectiveness trial and concurrent qualitative study, which will compare the effects of in-person advance care planning (ACP) discussions with trained facilitators versus web-based ACP using interactive videos among 400 patients with solid tumor cancer and their caregivers. (Funding Source: NIH/NCI Grant R01CA235730) Project-related publications  Patient-centered and efficacious … Read more