Background/Purpose:  Serving as an informal caregiver to a family member or friend with a chronic illness is associated with stress, reduced health status, and financial burden. However, effects of caregiving vary across conditions. We compared caregiving impact among caregivers of systemic vasculitis patients versus caregivers for other conditions.

Methods:  Caregivers of systemic vasculitis patients (n=68) were recruited for an online survey via 1) direct mailings to patients in vasculitis registries at two large academic medical centers asking patients to share study information with their “primary vasculitis support person”; and 2) announcements via vasculitis support groups and social media. The survey included validated measures of caregiving activities, impact, and burden. Primary outcomes included number of days in the past 30 days of 1) poor mental health, 2) poor physical health, and 3) poor sleep; as well as 4) greatest caregiving difficulty (financial burden, not enough time for self, not enough time for family, interferes with work, creates stress, affects family relationships, other difficulty, or no difficulty).  We constructed a comparison sample of non-vasculitis caregivers using publically available data from the Behavioral Risk Factor Surveillance Survey (BRFSS), an annual telephone survey of a random sample of community-dwelling, U.S. adults. We used data from five states administering an optional caregiving module in 2009-10, in which those who report providing regular assistance to a friend/family member with a health problem were asked questions about caregiving, including the four caregiving impact and burden items asked of vasculitis caregivers described above. Because analyses revealed that all vasculitis caregivers in our sample were White, non-Hispanic and had health insurance, we limited the BRFSS sample to respondents with these characteristics (n=4,636). Chi-square tests and logistic regression were used to compare the caregiving impact variables for vasculitis vs. BRFSS caregivers before and after controlling for education, age, sex, and relationship to the patient (spouse vs. other).

Results:  In unadjusted analyses, vasculitis vs. BRFSS caregivers were more likely to report ≥1 day of poor mental health (72.1% vs. 35.3%, p<.001), ≥1 day of poor sleep (82.4% vs 68.6 %, p<.05), and ≥1 day of poor physical health (51.5% vs. 37.8%, p = .059) in the past month. Vasculitis caregivers were also more likely to report caregiving difficulty (76.5% vs. 58.9%, p<.001), and that caregiving created financial burden (10.3% vs. 4.7%, p<.05) and stress (38.2% vs. 23.3%, p<.01). In multivariate logistic regression models, vasculitis caregivers had increased odds of poor physical health (OR = 1.81, CI 1.10-2.97), poor mental health (OR = 4.51, CI 2.59-7.86), and poor sleep (OR 2.35 CI 1.19-4.63), but no significant difference in caregiving difficulties.

Conclusion:  Vasculitis caregivers may experience increased burden and negative impact from caregiving relative to caregivers for patients with other conditions. More efforts are needed to develop supportive interventions to understand and address the specific needs of caregivers of persons with vasculitis.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/a-comparison-of-caregiving-burden-and-impact-in-systemic-vasculitis-versus-other-conditions/