September 2024 Newsletter
Sponsored Research
PI: Christine Rini, PhD, professor in the Department of Medical Social Sciences in the Divisions of Intervention Science and Implementation Science
Cancer patients undergoing hematopoietic stem cell transplant (SCT) face numerous challenges because of this treatment’s toxicity, lengthy hospitalization and recovery and persistent medical and psychosocial stressors. Patients describe needing more information and support to help them manage distress, medical symptoms and poor quality of life; feel prepared for SCT; and adhere to critical post-SCT preventive behaviors. Patient education from healthcare providers is a critical information resource, but patients also describe wanting information from other patients and needing types of information and emotional support that are best provided by people who have undergone SCT (i.e., peer support) including realistic information about the experience of treatment and recovery, side effects, and ways of coping. Peer support can reduce distress and social isolation; increase hope and optimism; help patients feel more informed, empowered and prepared; normalize their reactions and experiences; alert them to available resources; support and inform decision making; and model new ways of problem solving and coping. Research shows that cancer patients have limited access to peer support, which is challenging to provide in a scalable, cost-effective way.
In the prior project period for this award (R01CA223963), we developed a website (called Mosaic) in both English and Spanish to deliver peer support to SCT recipients through a collection of first-hand, survivor-written narratives paired with coordinated educational content and stress/coping resources. Developed with extensive guidance from a community advisory board, focus groups, usability testing and a strong theoretical foundation, Mosaic was designed to be scalable, easily accessible and able to help patients understand a range of SCT experiences in a way that is tailored to their emotional and problem-focused coping needs. Mosaic is now ready for efficacy testing.
We propose a 2-arm randomized controlled trial to evaluate whether providing patients with Mosaic prior to SCT can reduce their psychological distress (primary outcome) and improve other patient-reported and clinical outcomes. We will randomize 356 English- and Spanish-speaking patients recruited pre-SCT to Mosaic or to a rigorous web-based enhanced usual care condition that includes only Mosaic’s educational content. Participants will complete assessments at pre-SCT baseline, and 2-, 4-, 6-, and 8-months post-SCT. The trial will allow us to achieve 3 aims: (1) establish Mosaic’s efficacy for improving patient-reported outcomes of English and Spanish-speaking SCT patients; (2) determine mechanisms driving Mosaic’s effect on patient-reported outcomes; and (3) examine moderators of Mosaic’s effects on patient-reported outcomes. We will also use rich qualitative methods to explore patients’ experiences of whether and how Mosaic affected preventable clinical SCT outcomes with the goal of informing more focused, rigorous future research on these mechanisms. If efficacious, Mosaic could be quickly implemented clinically to reduce distress and improve outcomes in SCT.