Objective. In a cross-sectional study, we previously identified 2 potentially modifiable risk factors for adverse outcomes in systemic lupus erythematosus (SLE): self-efficacy and social support. The goal of this study was to evaluate in a randomized controlled trial a theory-based intervention to improve patient selfefficacy and partner support to manage SLE.Methods. Patients with SLE ages 18 years and older who met the American College of Rheumatology criteria and were able to identify a partner (spouse or family member) were recruited from 2 academic medical centers and randomized into an experimental group or a control group. Patients in the experimental group and their partners received an intervention designed to enhance self-efficacy, couples communication about lupus, social support, and problem solving, in the form of a 1-hour session with a nurse educator followed by monthly telephone counseling for 6 months. Patients in the control group and their partners received an attention placebo, including a 45-minute video presentation about lupus, and monthly telephone calls. Measures of physical and mental health status, disease activity, and psychosocial factors were collected at baseline, 6 months, and 12 months. The effect of the intervention on physical and mental health and disease activity at 6 and at 12 months was modeled with linear regression and adjusted for baseline health status, disease activity, sociodemographic factors, treatment change, and psychosocial factors.Results. One hundred twenty-two patients (plus their partners) were enrolled and randomized as follows: 64 to the experimental intervention and 58 to the attention control group. The participants were predominantly white, approximately half were college educated, and the groups were balanced for sociodemographic factors. At 6 months, significantly higher scores for couples communication (P ؍ 0.01) and problem-focused coping (P ؍ 0.03) were seen in the experimental group compared with the control group. At 12 months (6 months after the intervention ended), social support was higher (4.4 versus 4.1; P ؍ 0.03), self-efficacy was higher (7.2 versus 6.2; P ؍ 0.02), couples communication was higher (3.5 versus 3.1; P ؍ 0.03), and fatigue was lower (5.1 versus 6.3; P ؍ 0.02) in the experimental group compared with the control group. Global mental health status at 12 months, as measured by the Short Form 36 survey, was 69 points in the experimental group compared with 58 points in the control group (P ؍ 0.04). In multivariate models, adjusting for baseline covariates, scores for couple communication (P ؍ 0.01) were significantly higher at 6 months, and scores for self-efficacy (P ؍ 0.004) and global mental health status (P ؍ 0.03) were significantly higher at 12 months in the experimental group compared with the control group, and the mean score for global physical function was higher by 7 points, which was a clinically meaningful
Fatigue, a complex symptom, significantly affects the quality of life in many patients with systemic lupus erythematosus (SLE). To understand this phenomenon, 23 patients with SLE and fatigue were studied. Standardized tests of depression (NIMH), fatigue, exercise tolerance (ETT) on a bicycle ergometer, and SLE activity were obtained. At baseline, SLE patients had significantly lower maximum oxygen consumption (VO2 max) than normals (p less than 0.005). Adjusted for age and sex, SLE patients perform at 54% of their expected maximum VO2, which is similar to published data from patients with rheumatoid arthritis. Depression by NIMH was not correlated with VO2 max or length of time on ETT. Fatigue measured by Profile of Mood States (POMS) was correlated with ETT time (r = 0.476, p less than 0.025) and with VO2 max (r = -0.402, p less than 0.07). After an 8-week aerobic conditioning programme the experimental group increased their aerobic capacity by 19% in contrast to 8% in controls. This change correlated with decreased fatigue as measured by visual analogue scales. Exercise did not exacerbate disease, and only two of 16 experimental subjects experienced transient joint symptoms during exercise.
Seventy-six ambulatory patients with systemic lupus erythematosus and a comparison group of 23 ambulatory patients with rheumatoid arthritis were given a structured interview and standard psychological tests, including the Minnesota Multiphasic Personality Inventory, to determine the psychosocial impact of the illness. Both groups had significantly elevated scores on 3 Minnesota Multiphasic Personality Inventory scales: Hypochondriasis, Depression, and Hysteria. Psychological difficulties are an integral part of systemic lupus erythematosus and are as common as most other manifestations. The implications for clinical practice are discussed.The prevalence of psychological symptoms in systemic lupus crythematosus (SLE) is between 3 and 65% (1-8). Reported symptoms include depression, anxiety, depersonalization, withdrawal, hallucination, cognitive problems, and frank psychosis. Whether psychiatric symptoms are an integral part of lupus, are related to the stress of having a serious chronic illness, or are the result of drugs used in treating lupus (such as corticosteroids) is frequently difficult to determine in the individual patient.Existing studies on this subject are based on selected patients (ill or hospitalized), without controls or standardized measures of psychiatric symptoms (5). Improved understanding of psychological symptoms in SLE patients who are not acutely ill would help us in managing S L E patients and in defining the boundary between normal symptoms in reaction to an illness and the psychological manifestations of a multisystem disease (9).This study reports the psychological symptomatology assessed by a standardized interview and psychological testing, in a sample of ambulatory SLE patients and a comparison group of patients with rheumatoid arthritis (RA). PATIENTS AND METHODSPatient selection. Subjects were recruited through news media and letters to 132 active patients from our Lupus Clinic. Patients were asked to participate in a study "to help us to understand what it's like to have lupus." A total of 76 SLE patients participated. One hundred sixty patients with RA, randomly selected from a registry of RA patients at our hospital, were sent a similar letter. Twenty-three volunteered to participate after two mailings.Questionnaire and psychological scales. A 55-item questionnaire and a standardized interview gathering demographic, medical history, and psychosocial information were administered after informed consent was obtained. Five trained interviewers were checked for reliability at the beginning of and during the study by review of the taped interviews.Replies to the open-ended questions were transcribed directly from tapes for coding. These responses were categorized by 3 independent observers. Operational rules were established for coding the results, and the interviews
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