The caregiver burden in lupus: findings from UNVEIL, a national online lupus survey in the United States

Lupus. 2017 Jan;26(1):54-61. doi: 10.1177/0961203316651743. Epub 2016 May 28.


Objectives: Lupus imposes a substantial burden on patients; however, little is known about its impact on those caring for patients with the disease. In this study, we examined the impact 'caring for patients with lupus' has on caregivers from their own perspective.

Methods: UNVEIL was a one-time online national cross-sectional survey developed in partnership with the Lupus Foundation of America and fielded targeting the US Lupus Foundation of America constituents in 2014. Eligible caregivers were adults who self-identified as unpaid caregivers of patients with lupus. Eligible caregivers had to complete a series of sociodemographic questions as well as a series of well established outcome measures, such as the Short Form 12v2 Health Survey, the Work Productivity and Activity Index, the Caregiver Burden Inventory, and the Perceived Benefits of Caregiving Scale.

Results: A total of 253 caregivers completed the survey. The majority of caregivers (90.1%) were aged 60 years or younger, more than half (54.2%) were men, and more than half (59.7%) identified themselves as either a spouse or a partner to the patient with lupus they were caring for. Overall health-related quality of life was close to the norm mean of the general US population. Caregivers who were employed missed an average of 12.8% of paid work time due to caregiving responsibilities and reported a 33.5% reduction in on-the-job effectiveness. Nearly half of the caregivers surveyed (49.4%) indicated that their caregiving responsibilities impacted their ability to socialize with friends, and almost all caregivers (97.6%) reported experiencing increased anxiety and stress in relation to their caregiving role.

Conclusions: Caregiving for patients with lupus has a substantial impact on the work productivity and the social and emotional functioning of caregivers. Healthcare professionals and policymakers should continually assess the impact of healthcare decisions on the well-being of those caring for patients with lupus.

Keywords: Systemic lupus erythematosus; burden; caregivers; health related quality of life; work productivity.

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Anxiety / epidemiology
  • Caregivers / psychology*
  • Cost of Illness*
  • Cross-Sectional Studies
  • Efficiency
  • Female
  • Health Surveys
  • Humans
  • Lupus Erythematosus, Systemic / psychology
  • Lupus Erythematosus, Systemic / therapy*
  • Male
  • Middle Aged
  • Quality of Life*
  • Stress, Psychological / epidemiology
  • United States
  • Work Performance
  • Young Adult