Access: Lupus Research -- Quality of Life
Research Summaries from 2012
Academic Performance in Children With Lupus
Lupus in children is associated with decreased quality of life, including significant impairments in academic performance. The specific reasons for this impaired academic performance are not fully understood, but more research is being done in this area. This impaired academic performance may arise due to differences in cognitive, behavioral, and/or emotional functioning, or may be related to more specific factors such as memory. The results of this study highlight the role of increased lupus disease activity, and the possible role of school absenteeism is discussed, in the context of academic performance.
Assessing Family Role Functioning in People with Lupus
Family relationships are an important component of quality of life. However, exactly how much having lupus can disrupt one’s ability to fulfill family roles (such as a spouse, parent, or “breadwinner”) is not well- known, likely due to a lack of appropriate instruments. The development and validation of such a tool would be useful in gauging the social consequences of having lupus. The results of this study indicate that having lupus is significantly disruptive in a number of aspects of family life, including family activity participation, role functioning, and mental health, as well as social support and intimacy.
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Long-Term Outcomes of Neuropsychiatric Lupus
Neuropsychiatric lupus (NPSLE) includes a wide variety of neurological and psychiatric symptoms which are known to significantly impact short-term disease- and health-related outcomes. These include effects on organ damage, fatigue, employment status, and quality of life. While the negative short-term effects of NPSLE are well-known, the long-term effects have been less thoroughly documented. The results of this study highlight the long-term effects of early NPSLE-related events on organ damage and recurrences of NPSLE-related events over time, in those having NPSLE-related events around the time of lupus diagnosis. The findings also suggest that NPSLE-related events may occur in greater isolation than other kinds of lupus complications.
Research Summaries from 2011
Video Game Can Reduce Fatigue in African-American Women With Lupus
Many people with lupus experience fatigue, which can disrupt normal daily activities. This fatigue is not necessarily due to use of medications for lupus or to inflammation. Much research indicates that appropriate exercise can be one of the most effective strategies to reduce fatigue. Wii Fit is an interactive video game system that connects to a television and allows users to participate in a variety of guided exercises. The researchers hoped to learn the effects of a 10-week, home-based exercise program, Wii Fit, on fatigue, emotional state, sleep, and pain in African-American women with lupus. This pilot study illustrates that a home-based Wii Fit exercise program is safe for use in people with lupus, and is adhered to fairly well. People with lupus should always consult a physician before beginning any regular exercise program.
Self-Reported Effects of Cutaneous Lupus on Quality of Life
Ultraviolet radiation from the sun can worsen symptoms of cutaneous lupus (CLE) and people with lupus may experience “photosensitivity.” The researchers interviewed CLE patients about their photosensitivity to help determine its effects on quality of life. Based on patient responses about their history of photosensitivity, patients were classified into one of three groups for purposes of comparison. Over half of all CLE patients included in the study reported experiencing photosensitivity, which had varying effects on quality of life. The results indicate that clinical interview questions can identify CLE patients with photosensitivity. Compliance with recommendations to avoid UV light exposure continues to be warranted in CLE patients.
Validation of a Self-Reported Questionnaire for Neuropsychiatric Lupus Events
The incidence of neuropsychiatric disease in people with lupus varies widely, from 21% to 95%, depending on the stringency of the criteria used. Regardless, it is recognized that the occurrence of neuropsychiatric disease is associated with reduced self-reported quality of life in people with lupus. The use of standardized measures of health-related quality of life associated with neuropsychiatric events in people with lupus has not yet been validated. The investigators sought to examine changes in health-related quality of life associated with clinical outcomes of neuropsychiatric events in people with lupus over the course of one year. Health-related quality of life was determined for each patient by use of the Short Form 36 (SF-36), a questionnaire which includes components about both mental and physical status. The results of the SF-36 self-reports were compared to physician-determined assessments of the patients’ neuropsychiatric statuses. The most frequent neuropsychiatric events included the following: headache, mood disorders, cognitive dysfunction, anxiety disorder, cerebrovascular disease, multiple kinds of nerve inflammation, and seizures. Physician-determined changes in the neuropsychiatric statuses of patients were significantly similar to SF-36 self-reports provided by patients. The SF-36 thus appears to be a valid measure of changes in neuropsychiatric status in people with lupus that may complement other kinds of tests.
A Validated Quality of Life Instrument for People with Lupus
Health-related quality of life (HRQOL) is important to measure when new treatments are studied for lupus. There are a number of questionnaires that have been found to be helpful in determining how people with lupus are feeling and functioning in daily life. However, most of them were not developed specifically for lupus, considering the unique features of lupus in people’s lives. The LupusQoL was developed specifically for people with lupus. The LupusQoL-US questionnaire includes the following eight areas, or domains, of life that may be affected by lupus: Physical Health, Pain, Planning, Intimate Relationships, Burden to others, Emotional health, Body image, and Fatigue. Of the eight domains included in the LupusQoL-US, Fatigue and Physical Health were the most affected, followed by Pain, Planning, and Burden to others.
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Research Summaries from 2010
Brain Involvement in an International Cohort of Lupus Patients
The reported frequency of “neuropsychiatric lupus” (NPL) (brain inflammation) varies widely, from 37% to 95%, in people with lupus, but severe inflammation of the brain is quite rare. The high degree of complications and variability reported across studies stems largely from differences in definitions used in studies of NPL. In addition, some studies have lacked consistency in determining if the events are related to lupus. This ongoing study will follow people with newly diagnosed lupus over 10 years and researchers hope to accurately determine the frequency and outcome of NPL, as well as its impacts on quality of life.
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Cognitive Behavioral Therapy Benefits People with Lupus
Cognitive Behavioral Therapy (CBT) is a type of psychotherapy that explores the role of thinking in people’s well-being. One study found that CBT, along with biofeedback, reduced pain and improved coping in people with lupus. This new study suggests that CBT might also reduce stress, anxiety, and depression, and improve the quality of life in people with lupus.