Determinants of social participation in patients living with systemic lupus erythematosus: the Psy-LUP multicentre study

Abstract

Objective: Systemic lupus erythematosus (SLE) can negatively impact patients' social participation. The aim of this study was to identify the determinants of social participation in patients with SLE.

Methods: A cross-sectional evaluation was carried out in 100 adult outpatients with SLE enrolled in the multicentre psychosocial lupus (Psy-LUP) study. Participants completed the following standardised questionnaires: Participation Scale (social participation); Zimbardo Time Perspective Inventory; Sarason's Social Support Questionnaire; Couples Satisfaction Index; Brief Illness Perceptions; Short Form-36 and Lupus-QoL. Stepwise multivariate regression analysis identified determinants of social participation.

Results: 92 women and eight men were included. Mean age was 44 years, mean SLE duration was 14 years, 52% of patients had a history of lupus nephritis and 38% were currently receiving immunosuppressants and/or biologics. 73% were in a couple and 64% were employed. Social participation was reduced in 29% of patients (compared with 46% in rheumatoid arthritis or multiple sclerosis), who reported different illness perceptions than those with preserved social participation. In multivariate linear regression, female sex (p=0.006), smoking (p=0.04), osteoporotic fractures (p=0.03), anti-cardiolipin antibodies (p=0.01) and 'Past Negative' time perspective (p=0.002) were associated with reduced social participation, while haematological involvement (p=0.005) and 'Present Hedonistic' time perspective (p=0.02) were protective. Reduced social participation was also associated with illness representations and with lower health-related quality of life (HR-QoL) scores.

Conclusions: Social participation is frequently altered in patients with SLE and correlates with illness representations, time perspective and HR-QoL. Psychological support and therapeutic education may help improve patients' time perspective.

Trial registration number: NCT03913754.

Keywords: Health-Related Quality Of Life; Lupus Erythematosus, Systemic; Qualitative research; Social work.

Figure 1. Social participation restrictions, evaluated by the P-scale in different populations. (0–12 no restriction; 13–22 mild; 23–32 moderate; 33–52 severe; and >52 extreme restriction). (A) Patients with systemic lupus erythematosus (SLE) from the Psy-LUP study. (B) Patients with multiple sclerosis from the study by Mikula et al. (C, D) Patients with rheumatoid arthritis (RA), early (C) or established (D), from the study by Benka et al. P-scale, Participation Scale; Psy-LUP, psychosocial lupus.

Figure 2. Spidergraph of Lupus-QoL domain scores for patients with systemic lupus erythematosus (SLE) in the psychosocial lupus (Psy-LUP) study. Values are shown for all Psy-LUP patients and for patients with normal (P-scale ≤12) or reduced (P-scale >12) social participation. The axes of the graph represent the different Lupus-QoL domains, graduated from 0 in the centre (worst) to 100 (best). Points represent the mean score of patients from a given cohort in each domain. Lines connect the scores of patients from a same cohort. P-scale, Participation Scale.