Outcomes in Young Women with Fibromyalgia
Principal investigator: Carol S. Burckhardt, Ph.D.
Goal of study: To develop a model to plan early intervention strategies that minimize fibromyalgia-related disabilities and maximize health status in young women with fibromyalgia.
Description: The project focused on describing how fibromyalgia affects the lives of young women during the first year after diagnosis. The investigators recruited 98 women (48 in the United States, 50 from Sweden) between the ages of 18 and 39. Participants were interviewed within 6 months of diagnosis and again 6 months and 12 months later. They were asked questions about their employment, medications, diet, health provider visits, other illnesses, social support, strategies for dealing with symptoms, and their physical, psychological, and social difficulties. They were also asked their marital status, how many children they had, and their education level. The women answered self-report questionnaires that measured depression, anxiety, pain-coping strategies, and self-efficacy. (A person’s self-efficacy is the degree to which he or she believes one can controls the effects of one’s health problem.)
Progress and conclusions: Participants in both countries agreed that difficulties maintaining personal, work, and social roles arose from sources such as pain, severe fatigue, high stress, an inability to concentrate, standing or sitting for long periods of time, heavy lifting, and a lack of understanding by employers, colleagues, and family members. At the time of diagnosis, 71 percent of women interviewed were employed. By the time of the first study interview, that percentage had dropped to 60 percent. Twelve months after that first interview, 41 percent were employed. Predictors of unemployment included age (younger people were more likely to be unemployed), low physical functioning, pain severity that interferes with the ability to work, and a lack of belief in one’s ability to control pain.
Preliminary findings suggest that early intervention to assist newly diagnosed young women might lead to better outcomes in health status and quality of life. Useful interventions would be those that help women maintain paid employment, learn ways to manage their pain and fatigue, engage in physical exercise, maintain leisure activity, and encourage support from their social system.
This study was funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases.