Project Summary

The number of children and adolescents growing up with chronic disease is rapidly increasing. Unfortunately, their lives are often challenged by complicated care plans and secondary health and emotional challenges. The UCSF Child and Adolescent Chronic Illness Center’s comparative effectiveness research program engages patients to develop and address research questions that matter to them. Our ultimate goal is to provide patients, families, and practitioners with critical information needed to make healthcare decisions that optimize long-term health and wellness. Our partnership includes patients, families, caretakers, healthcare providers, researchers, and community and patient advocacy organizations. Our constituency is all children with chronic illness, because although their underlying conditions may differ, they share many similar concerns and needs. Most care provided to chronically ill people is actually provided in their own home. Thus, we will be focusing on how to improve self-management, self-efficacy, self-care agency, disease knowledge, and mood, all factors that are important determinants of quality of live among people living with chronic illness. We have formed several committees, including an advisory council, a Communication & Outreach Working Group, and a Transition Working Group. Our next step is to conduct roundtable discussions in the community with patients and their families. Through these roundtables patients will work with us to develop research questions focused on what treatments work best to optimize self-care management, with the goal of improving life-long health and wellness.

View Tier I Award

Project Information

Emily von Scheven, MD, MA
The Regents of the University of California, San Francisco
$24,999

Key Dates

12 months
2017

Tags

Award Type
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Last updated: March 4, 2022