Caregiving, dyadic quality of life and dyadic relationships in lupus.

AIMS: Systemic lupus erythematosus (SLE) mostly affects young women, adversely affecting their quality of life (QOL). Caregivers may experience caregiver burden (CGB), and it may lower the quality of their relationship. Herein we studied caregiving and CGB and their effects on QOL and relationships in SLE. METHODS: We recruited 10 dyads from the Lupus Clinic. Data collected included demographics, CGB (CGB Scale, screen for CGB), QOL (SF-36) and the quality of the dyadic relationship (Dyadic Adjustment Scale (DAS)). We calculated correlation coefficients for associations between (i) CGB and (ii) dyadic QOL or DAS. RESULTS: The mean (± SD) age of SLE patients was 35.2 (± 9) years and of caregivers was 37.3 (± 9.64) years. The mean (± SD, min-max) total CGB score was 9.1 (± 5.8, 0-19). The caregiver's QOL correlated strongly with some of the domains of the patient's QOL. The SLE-related CGB was associated with the caregiver's own QOL and their SLE partner's QOL. The dyadic DAS was linked to the patient's QOL. CONCLUSIONS: Because (i) CGB in SLE is associated with the caregiver's own QOL and with their SLE partner's QOL, and because (ii) the dyadic DAS score is linked primarily to the patient's QOL, then to optimize patient health outcomes and to decrease CGB, focus should be not only on the patient but should include the dyadic unit.Significant findings: To optimize patient outcomes of SLE patients, focus should be on the dyadic unit. CGB in SLE is associated with the caregiver's own QOL and with the SLE partner's QOL, making it crucial to study this relationship in more detail.

Serum free light chains, interferon-alpha, and interleukins in systemic lupus erythematosus.

OBJECTIVE: Interleukin-6 (IL-6), interleukin-10 (IL-10), interferon-alpha (IFN-α), and free light chains (FLCs: lambda, kappa) have all been noted to be of importance in systemic lupus erythematosus (SLE). Herein, we quantified and explored the relationship between these inflammatory mediators and disease activity in SLE; and stratified by their current anti-dsDNA antibody status. METHODS: Seventy-seven SLE patients underwent assessment of disease activity using the SLE disease activity index (SLEDAI). Serum FLC (lambda, kappa, and total), IL-6, IL-10, and IFN-α were quantified. Demographics of disease characteristics were determined by chart reviews. Statistical analyses included Mann-Whitney test, chi square, and linear regression analyses. RESULTS: Mean (SD) age of the patients was 44.9 ± 12.7 years; SLEDAI (mean ± SD) was 3.4 ± 4.0. Serum lambda FLC levels had a moderate correlation (r = 0.46 with physician global assessment, 0.44 with SLEDAI) and the strongest correlation with disease activity as compared with other inflammatory mediators including current dsDNA antibody status. After adjusting for prednisone use, the correlation of lambda FLC with PGA (r = 0.48) and SLEDAI (r = 0.52) was better than of current dsDNA antibody status with PGA (r = 0.33) and adjusted SLEDAI (r = 0.24), respectively. IL-10 and IFN-α activity did not correlate with disease activity. Serum FLC and IL-6 levels could differentiate between active and inactive SLE patients. Serum lambda FLC and IL-6 levels differed significantly among patients with and without current dsDNA antibodies. Serum lambda FLC levels accounted for 31% of variance in SLEDAI scores. CONCLUSION: Serum FLC and IL-6 are potentially useful biomarkers of disease activity in SLE. Further studies, with larger study sample and longitudinal design, are indicated.

Spanish LupusPRO: cross-cultural validation study for lupus.

PURPOSE: LupusPRO is a disease-targeted, patient-reported, outcome measure that was developed and validated among US patients with systemic lupus erythematosus (SLE). To expand the availability and use of the tool, we undertook a cross-cultural adaptation and validation study of the Spanish-translated version of the LupusPRO. METHOD: Forward and back translations of the 43-item English LupusPRO were undertaken and pretested in five individuals. The finalized Spanish version was administered to 211 SLE patients of Hispanic ancestry from the US and Latin America. Short Form-36 (Spanish) and Spanish LupusPRO were also administered. Disease activity was ascertained using the systemic lupus erythematosus disease activity index. A Spanish LupusPRO questionnaire that could be completed within 2-3 days was mailed to SLE patients of Hispanic ancestry and they mailed it back. Internal consistency reliability, test-retest reliability, criterion validity (against disease activity or health status) and convergent validity were tested. All reported p values are two-tailed. RESULTS: A total of 211 Spanish-speaking SLE patients (90% women) participated. Test-retest reliability of LupusPRO domains ranged from 0.80-0.95, while internal consistency reliability of the domains ranged from 0.71-0.96. Convergent validity with corresponding domains of the SF-36 was present. All health-related quality of life domains of the LupusPRO (except procreation) performed well against disease activity measures, establishing its criterion validity. Confirmatory factor analysis showed a good fit. CONCLUSION: The Spanish LupusPRO has fair psychometric properties and is now available to be included in clinical trials and in longitudinal studies for testing of responsiveness to change.

Lupus-specific health outcome measure for US patients: the LupusQoL-US version.

BACKGROUND: Patient-reported outcomes are valuable for the management of chronic diseases like systematic lupus erythematosus (SLE), but no measures have been validated for use in US-based patients with SLE. OBJECTIVES: To adapt and assess the validity and reliability of an SLE-specific quality of life (QoL) measure developed in the United Kingdom, the LupusQoL, for use in US-based patients with SLE. METHODS: Debriefing interviews of subjects with SLE guided the language modifications of the tool. The LupusQoL-US, SF-36 and EQ5D were administered. Internal consistency (ICR) and test-retest (TRT) reliability, convergent and discriminative validity were examined. Factor analyses were performed. RESULTS: The mean (SD) age of the 185 subjects with SLE was 42.5 (12.9) years. ICR and TRT of the eight domains ranged from 0.85 to 0.94 and 0.68 to 0.92, respectively. Related domains on the SF-36 correlated with the LupusQoL domains (physical health and physical function r = 0.73, physical health and role physical r = 0.57, emotional health and mental health r = 0.72, emotional health and role emotional r = 0.48, pain and bodily pain r = 0.66, fatigue and vitality r = 0.70, planning and social functioning r = 0.58). Most LupusQoL-US domains could discriminate between subjects with varied disease activity and damage. Principal component analysis disclosed five factors in the US version, with physical function, pain and planning items loading on one factor. CONCLUSIONS: These data provide evidence to support the psychometric properties of the LupusQoL-US, suggesting its utility as an assessment tool for patients with SLE in the USA.