Background The illness perception is a cognitive representation that directly influences the patient’s emotional response to their disease and its behavior to cope with this. Illness perception focuses on cognitive perceptions (identity, consequences of the disease, duration of this, personal control, and treatment effectiveness) and emotional (conscience about illness, emotions generated and understanding of this).
Objectives Determine the illness perception in patients with SLE according to their sociodemographic characteristics, disease activity and quality of life
Methods A cross-sectional study with 72 patients diagnosed with SLE from two Colombian hospitals was performed. Socioeconomic/demographic data, clinical features and disease duration were recorded. Disease activity was measured by the SLE Disease Activity Index (SELENA-SLEDAI); quality of life by the Medical Outcomes Survey Short Form 36 (SF-36). The revised Illness Perception Questionnaire (IPQ-R) was used for the estimation of the illness perception. Statistical analysis: Correlations between the variables, we calculated by Pearson rank correlation test
Results Mean age 30,3 ± 11.8 (12-65) 84.7% women, median 6 years disease duration (2-13), 77.7% living in a couple; 51% havecollege/university education. Most of patients are unemployed (68%). The mean scores of SF-36 physical component summary was 40.6 ± 10.7 (13-57) and Mental Component Summary 46.5 ± 11.1 (23.6-65). Mean disease activity by SLEDAI was 2,8 ± 3,1 (0-12); being inactive (SLEDAI ≤2) 61% of patients.
Patients living in a couple attribute more somatic symptoms as caused by SLE (r 0,21 p=0,07), think the disease is chronic and will last forever (r 0,20 p=0,05) and have more symptoms of anxiety and depression because of the SLE (r 0,24 p=0,03).
At higher educational level they are less confident that the treatment will control the disease (r -0,30 p=0,01) and don’t understand their illness (r-0,35 p=0,002). Unemployed people have more symptoms of anxiety and depression because of the SLE (r-0,22 p=0,05) and believe that the disease has negative consequences on their lives (r -0,28 p=0,01). With more number of flares, patients attribute more somatic symptoms as caused by SLE (r 0,40 p <0,001). As the disease gets more chronic patients feel better personal control over their illness (r 0,40 p <0,001) and when they understand their disease think that treatment is effective in controlling of the disease (r 0,29 p=0,01).
Conclusions Patients living in a couple seems to have more negative perceptions about their illness reflecting disturbances in family dynamics thus requiring strategies like marriage counseling that help improve illness perception and quality of life. The knowledge of our patient’s illness perception will allow designing effective interventions to improve treatment adherence, reduce associated morbidity and health care costs to finally have a real impact in the quality of life of lupus patients.
References: K McElhone et al. Patient perspective of SLE in relation to health-related quality of life concepts. Lupus 2010; 19: 1640–1647
Moss-Morriss R, Weinman J, Petrie K.J, Cameron L. The Revised Illness Perception Questionnaire (IPQ-R). Psychology and Health 2002; 17 (1): 1-16
Disclosure of Interest: None Declared