Rare Daily Staff

People with a rare disease are more likely to suffer depression and anxiety than people with more common diseases, even if symptoms are similar, researchers at Oregon State University report in a new study.

The study, published in the journal Health Psychology, surveyed 1,218 adults across the United States who have a rare disease.

“Just being rare invites in a whole other set of challenges that we think most people with any sort of rare disorder experience,” Oregon State University researcher Kathleen Bogart of the School of Psychological Science in the College of Liberal Arts said, pointing to such things as stigma, psychological distress and struggle getting a diagnosis and treatment.

The study grouped participants in clusters based on age of onset, disease progression, visibility and symptom severity. The survey asked participants how their disease affects their daily life, including physical pain and fatigue as well as depression and anxiety.

Results showed that regardless of the specific disease, people in the “early onset with very severe symptoms” and “severe symptoms” clusters showed the highest rates of psychological distress, though almost all clusters studied reported clinically significant anxiety and depression.

The “stable” cluster fared much better, results showed, likely because the more predictable nature of the disease process resulted in less uncertainty and distress.

While funding for diseases tends to focus on looking for treatments and cures, the cost of developing some basic psychological tools could be far lower, Bogart said. There is currently no specific psychological intervention to support people with rare diseases, such as cognitive behavioral therapy or standards for screening patients for depression and anxiety.

Other measures could involve the rare disease community and organizations. They could help a patient with a rare disease meet with other rare disease patients close to home, instead of the patient having to travel three states to find a support group for people with their specific disease.

“When there are 7,000 disorders, it’s unreasonable to expect that you could cure them all within patients’ lifetimes. Only 5 percent of those diseases have treatments or cures,” Bogart said. “So, we need to think about practical ways that we can improve people’s quality of life in the meantime, and fortunately, we don’t have to think about it disease by disease when we think about psychological distress.”

Photo: Oregon State University researcher Kathleen Bogart of the School of Psychological Science in the College of Liberal Arts

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