Carolyn Thorpe, PhD, MPH

Study:  Impact of Healthcare Utilization and Informal Caregiving for Primary Systemic Vasculitis:  A National Perspective
Institution:  Pharmacy and Therapeutics, School of Pharmacy, University of Pittsburgh
Award:  $99,920, two-year study

Individuals with systemic vasculitis (SV) require significant formal healthcare services and rely on family members and friends to provide informal caregiving support. Yet very little is known about patterns of healthcare utilization and costs among SV patients, or how family and friends are impacted by serving as informal caregivers to SV patients. Characterizing the burden of formal and informal care for SV from the perspectives of patients, family members, and the U.S. healthcare system is critical to raising awareness of the illness among policy-makers and garnering additional resources to support those affected by it.

This study proposes to provide such data through three specific aims:

Aim 1:  Using 2010 data from the Healthcare Cost and Utilization Project – Nationwide Inpatient Sample, produce national estimates of annual utilization, costs, and outcomes of hospitalizations (i.e., number of discharges, length of stay, overall costs, and patient mortality) for all patients with SV in the U.S., and characterize variations in utilization, costs, and outcomes by patient, stay, and hospital factors.

Aim 2:  Using 2010 claims and enrollment data from the Centers for Medicare and Medicaid Services (CMS), describe annual utilization and costs across the full range of health care services required to treat patients with SV who are enrolled in fee-for-service Medicare in the U.S. and characterize variations in costs and mortality by patient socio-demographic, clinical, and geographic factors.

Aim 3:  Using online surveys and validated measures with SV patients, family members, and friends, describe the nature and impacts of informal caregiving (physical, emotional, social, and financial) for SV and examine predictors of greater burden.

This research will provide preliminary data for future federal grant applications, including further studies of variation in treatment for SV, comparative effectiveness of SV treatments, and development of psychosocial interventions to better support SV patients and their loved ones.

Dr. Thorpe will work with co-investigators Joshua M. Thorpe, PhD., MPH, University of Pittsburgh, and Delesha M. Carpenter, PhD, MSPH, Susan L. Hogan, PhD, MPH and Julie G. McGregor, MD., University of North Carolina.

The VF Research Program is funded by donations and is the largest private funder of research on vasculitis, granting more than $1-million to researchers around the world. Because of VF-funded vasculitis research, new and improved treatments and a greater understanding of vasculitis have increased the life expectancy for patients and improved their quality of life.