Project Summary

As advances in health care have improved survival for children with fatal conditions, the rates of childhood chronic disease have increased. Unfortunately, most chronically ill children develop secondary morbidities such as growth disturbances, premature osteoporosis, cardiovascular disease, and emotional/psychosocial problems that interfere with achieving their educational and vocational potential. Preventing emerging morbidities in chronic disease requires screening and a different type of health maintenance. As these children survive to adulthood, patients and families want to know how to prepare, and what can be done now, during childhood, to optimize health and wellness over a lifetime. At UCSF, we are building a Child and Adolescent Chronic Illness Center that will provide innovative care across diverse diseases; address medical, developmental, psychosocial, and patient educational concerns; and integrate with adult medicine to ensure smooth transitions to adult care. A combined center will allow multiple sub-specialties and stakeholders to address the shared challenges associated with childhood chronic disease together. We have already identified the medical stakeholders, and plan to leverage established relationships to engage community organizations and the hospital’s Family Advisory Council to engage patients/families. Our next step is to develop the center’s comparative effectiveness research plan.

This Tier I application will be used to build capacity for the Chronic Illness Center’s comparative effectiveness research program. Specific activities include engaging the stakeholders (researchers, patients, families, physicians, nurses, mental health workers, patient educators, community organizations, and hospital administrators), strengthening their relationships, developing a patient-centered scientific agenda, and framing research questions that matter to the patient.

Project Information

Emily von Scheven, MD, MA
The Regents of the University of California, San Francisco
$15,000

Key Dates

9 months
2016

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Award Type
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Last updated: March 4, 2022