Health-related quality of life and support group attendance for patients with systemic lupus erythematosus

Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease with variable symptoms. Severity of disease has been associated with mental and physical health-related quality of life (HRQoL). The potential effects of support groups have not been examined. We examined the possible improvement in mental and physical HRQoL of women with SLE who attended support groups. Thirty-four women who attended support groups and 71 comparison women with SLE were recruited. Self-administered surveys included the Medical Outcomes Study Short-Form 36 (SF-36) and a 3-level rating of disease activity. Mean SF-36 Mental Health Summary Scale scores (MCS) were significantly lower for women attending groups (31.5) compared with nonattending SLE women (39.8). MCS scores were lower for blacks compared with whites (33.7 vs. 39.2, P < 0.05). Women with high and moderate disease activity had lower MCS scores compared with those with low activity (28.6 or 35.6 vs. 42.7, P 0.05). In linear regression, 27% of the variation in MCS was explained by support group attendance, disease activity, race, and age. Overall, women with SLE reported lower MCS and physical health summary scales (PCS) scores than published population values, indicating markedly reduced quality of life. Any potential positive effects of support groups will need to be tested in a prospective random design to assess improvements in HRQoL.