US EDS patients face high healthcare costs, study finds
Annual median out-of-pocket expense tops $13,000, researchers say
People with Ehlers-Danlos syndrome (EDS) living in the U.S. face high healthcare costs, with the annual median out-of-pocket expense exceeding $13,000, a study found.
The findings “highlight the magnitude of the burden of health care spending on patients with EDS,” with “both direct and indirect costs of accessing and receiving medical care,” the researchers wrote.
The study, “The Financial Impact of Ehlers-Danlos Syndromes on Patients in the United States in 2022,” was published in Mayo Clinic Proceedings: Innovations, Quality & Outcomes.
EDS is a group of genetic disorders that affect connective tissues, which provide structure and support to joints, skin, blood vessels, and various organs. Common features include overly flexible joints and soft, elastic skin. Complications may involve frequent bruising, slow wound healing, joint dislocations, chronic pain, and issues affecting the eyes and teeth. Other complications may include fatigue, sleep disturbances, gastrointestinal dysfunction, anxiety, and depression.
These symptoms can significantly impair quality of life and require multidisciplinary care.
Questionnaire focuses on 2022 costs
The researchers used an online questionnaire distributed through patient advocacy organizations, support groups, social media platforms, and healthcare professionals to assess direct, out-of-pocket costs for patients in 2022. They received 1,122 responses. After excluding duplicates and others that failed to meet the study’s criteria, the final analysis was based on 884 responses covering patients 18 and older.
Ninety-eight percent of the respondents were EDS patients. Six percent came from a parent or guardian of a child with EDS, and 1% from a close family member. Responses were from all 50 states and the District of Columbia.
Most respondents had hypermobile EDS (84%), the most common type of EDS, and 30% were diagnosed in 2021 or 2022. Half reported “significant functional limitations or worse” in response to a set of questions designed to measure difficulty with activities such as household tasks and social events.
More than half had individual income of less than $25,000 in 2022, and more than 30% reported household income of less than $50,000. More than 80% of respondents said they had commercial insurance, though 29% also reported using Medicaid in 2022.
Financial assistance more often came from family and friends than from government programs, the survey found. Sources of financial support included family/friends (32.3%), Social Security Disability Insurance (16%), Supplemental Security Income disability benefits and commercial disability insurance (6.6% each), and charitable organizations or other assistance programs (5.1%).
Some 31.7% of respondents worked full time, and 17.7% said they worked part time. When asked whether EDS influenced a decision to work less or stop working, 82% said it had, and 14% said it had not.
The patients surveyed “reported high utilization of health care resources (primary care, specialty care, and physical and occupational therapy). This result reflects the multisystems involvement of EDS,” the researchers wrote.
In addition to primary care providers such as family doctors and pediatricians, patients saw specialists including orthopedists, neurologists, and cardiologists, and used therapy services including massage, acupuncture, and chiropractor services. Patients saw primary care physicians a median of five times during the year, while the median number of specialty care visits was 12.
Nineteen percent of respondents said they didn’t receive the care they needed, 51% said they received needed care some of the time, and 30% said they got it most of the time.
The total median out-of-pocket healthcare expense was $13,450 (range $6,500-$25,800).
“Our study focused on the costs for 1 year (2022) and does not necessarily reflect the cumulative costs associated with living with EDS over time,” the scientists wrote. “Because this management is lifelong, the associated costs are expected to accumulate over time and the long-term consequences are even more significant.”
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