Background/Purpose:
The purpose of this study was; 1) to assess the unmet needs of adults with lupus; 2) to explore their future interest in attending community based educational programing.
Systemic Lupus Erythematosus (SLE) is an arthritis related chronic autoimmune disease. SLE is the most common and most severe form of lupus involving multiple body systems including the blood, muscles, joints, organs and the nervous system (Wallace, 2009). It is estimated that 161,000 to 322,000 adults with SLE live in the United States (Helmick, et al., 2008). The rising costs of health care, increasing incidence and the impact of SLE on quality of life provides rationale for this study. This research can be used to support the future design of community based services.
Methods:
This research proposal was reviewed and approved by the University Institutional Review Board and the Lupus Foundation of Minnesota (LFM). Adult members of LFM were invited to participate in the survey. The survey was conducted in Minneapolis and St. Paul, Minnesota. Items for the needs assessment survey were selected by the researcher in collaboration with the Lupus Foundation of Minnesota. The survey included 23 items listed on the Systemic Lupus Erythematosus Needs Questionnaire (SNLEQ)(Moses, Wiggers, Nicholas, & Cockburn, 2007) and 25 items from categories listed on the World Health Organization Quality of Life Assessment (1995) and the Healthcare Assessment Questionnaire developed by Fries, Spitz, Kraines, & Holman (1980). Survey items were ranked on a 5 point rating scale based on level of difficulty participating in daily life tasks, managing physical symptoms and emotional concerns. Demographic information, access to services, and interest in community based programing was assessed through open ended and multiple choice questions. The data was analyzed descriptively.
Results:
Results: Ninety six participants completed the survey. The majority of the study participants were women (95%), with an average age of 49 years old. Over half of the respondents (52%) reported that they were not working at the time of the survey. Three percent of those surveyed received occupational therapy services within the past year. Most participants were Caucasian (82%). Fifty percent of participants reported moderate or higher level difficulty doing the daily tasks of sports, climbing, outdoor work, and managing the physical symptoms of pain and fatigue. Thirty percent of those surveyed reported difficulty coping with emotional concerns of depression, stress and anxiety. Management of fatigue was the most prevalent area of concern. Eighty seven percent of participants reported that they may be interested in attending a community based educational program addressing the areas of fatigue, pain, stress, strength and conditioning, coping skills and life balance.
Conclusion: This study is important in that it identifies there is a need for and interest in community based educational programing for those living with lupus. Community based services can play a key role in improving the quality of life of those with SLE through providing services to help adapt or modify their environments and manage the disease symptoms.
Disclosure:
B. L. Frie,
None;
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-everyday-challenge-of-living-with-lupus/