Long wait times for specialists and high out-of-pocket costs are the top barriers associated with lupus care and diagnosis, according to a press release by the Lupus Foundation of America, based on data from the 2021 Lupus 21st Century Conference.

More than 1300 people were included in a study conducted by the Lupus Foundation of America in partnership in Exagen Inc.

Participants faced several health care challenges from their first visit to the doctor for their symptoms.


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More than half of the participants reported long wait times for seeing a specialist; approximately one-thirds of participants reported that out-of-pocket costs were too high; and 30% of participants believed that there are not enough doctors who are specialized to treat lupus.

These health care challenges were found to be associated with a delayed diagnosis; participants with a delayed diagnosis (≥5 years) vs those with a diagnosis of less than a year reported higher wait times, greater costs, and lesser specialists nearby to treat lupus.

Additional barriers that were identified included issues with insurance not covering the costs of services needed and long wait times with primary care providers.

Researchers of the study also identified that many participants were misdiagnosed, with anxiety (32%), depression (30%), and fibromyalgia (23%), prior to their lupus diagnosis. Approximately 22% of study participants were told that nothing was wrong with them.

“Our study underlines the barriers that are faced by patients seeking critical medical care from health care providers for symptoms that could be lupus and shows the importance in working with the medical community to further practitioner education of lupus, availability of specialists such as rheumatologists, and working toward solutions to reduce out-of-pocket healthcare costs,” concluded Stevan W. Gibson, president and chief executive officer of the Lupus Foundation of America.

Reference

New research shows top barriers to lupus care and diagnosis, including delayed access to specialists and high/increased health care costs. News release. Lupus Foundation of America. Published November 15, 2021. Accessed December 6, 2021. https://www.lupus.org/news/new-research-shows-top-barriers-to-lupus-care-and-diagnosis