Objectives To evaluate the effectiveness of a standardized educational intervention to improve pain, fatigue, sleep and health-related quality of life (HRQoL) in patients with systemic lupus erythematosus.
Methods Design: Open, uncontrolled intervention. Patients: 22 adults with SLE (ACR criteria) selected by simple randomization. Intervention: A nurse provides face-to-face training activities to groups. They include oral presentations and group dynamics. In the first session, 22 patients participated. Self-management aspects were tackled in the following topics: 1. What is pain? 2. Self-management: chronic pain. 3. Self-management: rest. 4. What is fatigue? 5. Self-management: fatigue. In the second session, half of patients (n=11) participated. Psychological aspects to improve the self-management of chronic pain and fatigue were worked by covering the following topics: 1. Cognitive Restructuring. 2. Breathing relaxation techniques. Variables: Outcome 1. Improvement in chronic pain at 3 months, assessed with the Brief Pain Inventory (BPI) questionnaire. Outocome 2. included changes in coping with chronic pain, using the Spanish coping questionnaire to the chronic pain (CAD), in HRQoL assessed with both the EQ-5D and the SF- 36, and in fatigue using FACIT-F/fatigue at 3 and 6 months. Other meassured variables were: changes in lupus activity (SELENA-SLEDAI) and in sleep (Oviedo questionnaire). Comorbidities were collected using the Charlson Comorbidity Index. All variables except comorbidities were collected before the intervention, at 3 months and at 6 months (only patients who attended the 2nd workshop). Statistical analysis: Descrptive of the results, Student's t-distribution or Wilcoxon signed-rank test for paired samples as appropriate for quantitative variables. McNemar's test on paired qualitative variables at the 3-month assessment. Repeated measures ANOVA at 0, 3 and 6 months assessments.
Results A total of 22 women with SLE participated (age 46.3±11.3) with baseline SLEDAI 2.8±2, 3 months 2.73±1.52, 6 months 2.54±2.2. 77.3% had multimorbidity (≤2). Major comorbidities presented were: gastrointestinal diseases (31.8%), depression (31.8%), anxiety (22.7%), visual impairment (18.2%), obesity (13.6%), degenerative disc disease (13.6%), osteoporosis (13.6%), peripheral vascular disease (13.6%). Baseline and throughout the study, 4.5% of patients used CPAP to sleep and 40.9% used hypnotics.
At 3 months, sleep (p=0.042) and coping with chronic pain (p=0.008) improved. No change observed in all other variables. At 6 months, % of relief with medication (Pillai-M. S. Bartlett trace, p=0.008) and HRQoL meassured with EQ-5D (Pillai-M. S. Bartlett trace, p=0.024) improved. We found no differences in all other variables.
Conclusions The educational intervention had positive effects on pain, sleep and HRQoL in SLE patients at 3 and 6 months. Although a forgetting effect might have occurred at 6 months in some of the improvements obtained at 3 months, we cannot discard that the small size of the sample makes it harder to detect differences at 6 month. Since they are preliminary results, we expect to obtain more solid results once the study is completed.
Disclosure of Interest None declared