Dr. Thorpe and colleagues at the University of Pittsburgh and the University of North Carolina have been awarded a $100,000 two-year grant from the Vasculitis Foundation, under their Vasculitis Research Initiative to Assess Disease Impact (V-RIDI).
Click HERE to view a brief You Tube video about the study.
The study, which is entitled, “Impact of Healthcare Utilization and Informal Caregiving for Primary Systemic Vasculitis: A National Perspective,” will use nationally representative, existing datasets as well as survey data to be collected from vasculitis patients and their caregivers to characterize the burden of formal and informal care for systemic vasculitis across the United States. Dr. Thorpe is supported on the grant by several co-investigators, including Joshua Thorpe, PhD, MPH at the University of Pittsburgh School of Pharmacy, and Delesha Carpenter, PhD, MSPH, Susan Hogan, PhD, and Julie McGregor, MD at the University of North Carolina.
Recruitment of vasculitis patients and their caregivers into the survey portion of the V-RIDI study will begin in late 2014. We will primarily recruit patients through 1) the University of Pittsburgh Center for Vasculitis, and 2) the Glomerular Disease Collaborative Network inception cohort registry, which is a collaboration of the University of North Carolina and community nephrology offices in the Southeastern United States. Patients in these areas are encouraged to keep their eye out for recruitment announcements and mailings!
For additional details about the V-RIDI study, please read on and/or contact Dr. Thorpe via email at firstname.lastname@example.org.
Project Summary: 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 use of healthcare services 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 Medicare claims data, describe annual utilization and costs across the full range of healthcare services required to treat Medicare beneficiaries with SV 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.
Expected Findings of the V-RIDI Study:
By using existing administrative healthcare data from HCUP-NIS and Medicare to examine healthcare utilization and costs associated with SV in the U.S., Aims 1 and 2 will:
- Provide descriptive epidemiology of hospital use and associated costs for SV nationally in the United States, including national estimates of prevalence, race, socio-demographic and geographic distribution, thus providing the first data on the burden of SV on the entire U.S. inpatient healthcare system (Aim 1);
- Provide insight into costs per inpatient stay for systemic vasculitis (Aim 1), and total direct medical costs per Medicare beneficiary (Aim 2) and how these costs compare to those for patients with other conditions;
- Allow for understanding of how healthcare utilization and costs vary across the specific types of SV (Aims 1-2);
- Determine the amount and proportion of total direct healthcare costs that are borne by Medicare beneficiaries with SV versus the Medicare program (Aim 2);
- Reveal how the cost burden of inpatient care for SV varies for public versus private insurers, as well as the cost burden created for patients without health insurance (Aim 1);
- Identify whether or not disparities in utilization patterns and costs of healthcare exist by key patient characteristics, including race/ethnicity, age, gender, and geographic location (Aims 1-2).
Taken together, Aims 1-2 represent important strides toward understanding the totality of healthcare resources required for SV and associated direct medical costs incurred by patients and insurers nationally in the U.S. Quantifying these costs would aid immensely in future efforts to garner additional resources to support treatment and research into the causes of vasculitis. In particular, given that Medicare is a federally-funded government program that has historically experienced rapid cost growth, policy-makers and the public are increasingly invested in ways to improve the quality of care and reduce costs for its beneficiaries. Thus, characterizing the burden of SV to the Medicare program – and particularly the per-beneficiary annual cost – is like to be incredibly useful in future advocacy efforts.
In Aim 3, we will collect survey data on informal caregiving roles, burden, and financial impact from SV patients and caregivers, using validated measures that have been used with other patient groups. For some of these measures, we will be able to compare SV caregivers’ responses to publically available, national normative data for representative samples of caregivers for other types of chronic conditions. Thus, Aim 3 will:
- Provide insight into how caregiving for patients with SV impacts caregiver’s self-esteem, family dynamics, finances, schedules, physical health, mental health, and overall quality of life;
- Identify how patient clinical and psychosocial factors, including relapse, influence the impacts of caregiving for SV and which caregivers are at high risk for negative effects;
- Suggest how family members and friends’ health and quality of life is impacted by SV caregiving, relative to a representative sample of non-caregivers; and
- Reveal how caregiving roles and health effects for SV compare to caregiving impacts for other conditions, which will inform future advocacy efforts for SV caregivers.
We anticipate that Aim 3 will provide key data to inform the development of psychosocial and educational interventions to better support vasculitis patients and their loved ones. In particular, understanding the scope of SV caregiving and the aspects with which caregivers struggle most will ensure that interventions can be developed that address caregivers’ and patients’ greatest needs.