Economic and objective burden of caregiving on informal caregivers of patients with systemic vasculitis.

INTRODUCTION: Systemic vasculitis (SV) is associated with substantial economic impact to patients and the healthcare system but little is known about the burden of SV on informal caregivers. We evaluated the objective caregiving burden experienced by informal caregivers of patients with SV. METHODS: We surveyed adult patients and their informal caregivers on the physical, emotional, social and economic impacts of SV. We asked patients about the extent to which they felt they were a burden to their identified caregivers. Caregivers reported the direct and indirect economic impact of SV, including employment disturbance, income loss and relative time investment of caregiving for their care recipient's SV. We used the Inventory of Caregiving Activities Questionnaire to compute the objective caregiving burden. RESULTS: We analysed data from 68 SV patient-caregiver dyads. Patients reported moderate levels of subjective burden to their caregivers. Over one-quarter of caregivers reported ever having lost some income owing to caregiving for SV. Caregivers reported spending a median of 19 weekly hours on various caregiving tasks, including a median 17 weekly hours on household activities. DISCUSSION: Given the extended hours that caregivers spend caring for their care recipient, intervention targets should aim to reduce caregiver burnout in the SV population. Future research should examine the relationship between the objective burden of caregiving for SV and the overall physical health, mental health and quality of life of caregivers.

Increasing Access to High Value Care: Preventing Complications in Common Disorders.

Most infantile hemangiomas (IHs), the most common vascular tumors of childhood, evolve without complications; however 10% to 12% require specialty referral for treatment. To emphasize the complications of late referral, we present a case of necrotizing infection within a segmental IH leading to sepsis. Early evaluation by a pediatric dermatologist could have prevented this life-threatening and disfiguring complication. We discuss how teledermatology would enable rapid triage of such critical cases in underserved areas, increasing access to high-value care and optimizing outcomes for our most vulnerable patients.

Impact of vasculitis on employment and income.

OBJECTIVES: Work disability associated with rheumatic diseases accounts for a substantial financial burden. However, few studies have investigated disability among patients with vasculitis. The purpose of this study was to examine the impact of vasculitis on patient employment and income. METHODS: Patients enrolled in the Vasculitis Clinical Research Consortium (VCRC) Patient Contact Registry, living in the USA or Canada, and followed for >1 year post-diagnosis, participated in an online survey-based study. RESULTS: 421 patients with different systemic vasculitides completed the survey between June and December 2015. The majority of patients were female (70%) and Caucasian (90%); granulomatosis with polyangiitis (GPA) was the most common type of vasculitis (49%), and the mean age at the time of diagnosis was 53 years. At the time of their diagnosis of vasculitis 76% of patients were working a paid job, 6% were retired, and 2% were on disability. Over the course of their disease, and with a mean follow-up of 8±6.4 years post-diagnosis, 26% of participants became permanently work disabled or had to retire early due to vasculitis. Variables that were independently associated with permanent work disability included work physicality, less supportive work environment, and symptoms such as respiratory disease, pain, and cognitive impairment. Overall, patients reported a mean productivity loss of 6.9% and income was reduced by a median of 45%. CONCLUSIONS: Due to their vasculitis, patients frequently suffer substantial limitations in work and productivity, and personal income loss.

Healthcare utilization and expenditures for United States Medicare beneficiaries with systemic vasculitis.

OBJECTIVE: The Medicare federal insurance program is the most common United States insurer of patients with systemic vasculitis (SV). We compared healthcare utilization and expenditures for Medicare beneficiaries with versus without SV. METHODS: This national, retrospective study used 2010 claims and enrollment data for a 100% cohort of Medicare Part A and B beneficiaries with ≥1 claim including a diagnosis for a form of SV (n = 176,498), and a randomly selected group of non-SV beneficiaries (n = 46,561). Outcomes included annual counts of events in 16 categories of medical services (e.g., inpatient stays, physician visits, tests, and imaging events), and total annual Medicare and patient medical expenditures. We used linear regression with bootstrapped standard errors to compare utilization and expenditures by SV status, before and after matching on age and sex. Prescription drug fills and expenditures for SV (n = 95,157) and non-SV (n = 24,992) beneficiaries with Part D drug benefits were also compared. RESULTS: After matching, Medicare spent $11,004 more per patient in 2010 for medical services, and $773 more on prescription drugs, for SV versus non-SV beneficiaries. SV beneficiaries spent $1547 more for medical services and $211 more for prescription drugs. Except for hospice, SV beneficiaries had greater utilization of all services, including two-to-three times more dialysis events, hospital readmissions, inpatient stays, skilled nursing facility stays, and medical tests. CONCLUSIONS: The average Medicare beneficiary with SV incurs about double the annual healthcare expenditures compared to their non-SV counterparts, attributable to increased utilization of almost all categories of care.

Effectiveness and cost of hepatitis C virus cryoglobulinaemia vasculitis treatment: From interferon-based to direct-acting antivirals era.

BACKGROUND: The net benefits of new hepatitis C virus (HCV) direct-acting antiviral drugs (DAA) in patients with cryoglobulinaemia vasculitis (CryoVas) are unknown. OBJECTIVE: To analyse the effectiveness and cost of all treatments used for HCV-CryoVas in the DAA vs pre-DAA era. METHODS: A chart review of all HCV-CryoVas patients who received antivirals from 1993 to 2016 in a tertiary centre was performed. Treatment effectiveness was analysed for clinical, immunological and virological responses. Cost analyses included anti-HCV treatments, non-antiviral drugs, plasmapheresis, dialysis and hospitalizations. We compared main data in the pre-DAA vs DAA period. RESULTS: About 201 HCV-CryoVas patients were included (women, 53.2%; mean age, 59.2 years; Metavir score F3-F4, 36.7%; genotype 1, 64.2%). Patients in the DAA era (n=27) compared to those in the pre-DAA era (n=174) showed higher rates of clinical (96.3% vs. 78.6%), immunological (89.5% vs. 77.1%), and sustained virological response (75.0% vs. 42.8%). Death rate was 14.8% vs. 24.4% respectively. In the DAA compared to pre-DAA era, mean cost of anti-HCV drugs increased from 11 855 to 57 632 € while mean CryoVas-related cost decreased for both hospitalizations (from 33 510 to 21 347€) and non-antiviral treatments (from 17 347 to 11 397€). CONCLUSION: Improved antiviral efficacy of HCV drugs in the DAA era led to increased clinical and immunological efficacy and a lower death rate. Use of DAAs was associated to higher costs for HCV drugs while costs related to both hospitalizations and non-antiviral treatments decreased.

Systemic vasculitis: how little we know about their societal and economic burden.

This article attempts to perform an evaluation of the state of the art of the economic and societal burden of systemic vasculitis (VAs). Due to the rarity of these diseases and their variable clinical picture, few data are available in the literature on their health economic issues, and only some papers have been published that marginally examine the problem. Since VAs are severe conditions with a high medical and societal impact and determine high healthcare resource consumption, studies able to define societal, quality of life and economic burden of these pathologies are needed. Policy makers, private and public organisations involved in the care of VAs need data to programme future investment or make cost-effectiveness analysis for introducing new drugs or protocols.