A lot of the support can be similar, cutting across the types of disorders that patients have, the team said.
It’s common for people with rare diseases to have more anxiety, depression, pain and fatigue, and be less able to participate in society, they noted.
Their findings, “Health-related quality of life among adults with diverse rare disorders,” appeared in the Orphanet Journal of Rare Diseases.
The results were part of a larger project called the Adults with Rare Disorders Support Study.
U.S. health officials define a rare disease as one affecting fewer than 200,000 people. In Europe, it is one that affects one out of every 2,000 people.
Although every rare disease presents challenges, research indicates that some challenges cross disorders. For example, people with rare diseases are often unable to obtain accurate information about their condition or what the proper treatment should be. In addition, it’s likely to take a long time for them to be diagnosed. And they are also likely to feel isolated.
The Oregon State researchers wanted to know if similar types of psychosocial support could benefit people with different kinds of rare diseases.
“Even though their diseases are different, their experience is similar,” Kathleen Bogart, an assistant professor of psychology, said in a press release. “There is some benefit to looking at this group collectively, rather than trying to work with each small rare disease group independently.”
The team asked more than 1,200 Americans with 232 rare diseases to complete questionnaires about their disease and their quality of life. The group included Angelman syndrome patients.
A key conclusion was that organizations dealing with rare diseases should do more to address patients’ psychosocial needs. This includes spending more on these needs and organizing more support groups.
Helping patients reduce the stigma they feel about their disease, decrease their isolation and improve their access to information and treatment would increase their quality of life, the researchers said.
“Some people with rare diseases may never meet another person with that disease,” Bogart said. “That can be very isolating.
“Conferences are one way to bring people with similar experiences together to share,” she said. “It helps them feel connected, normalized and validated. The beauty of these quality-of-life of findings is that they are not disease-specific. There are already umbrella groups that can provide this kind of support to people with rare diseases, regardless of their individual diseases.”
The team plans to meet patients in focus groups to advance their understanding of quality-of-life dimensions of rare diseases. The ultimate goal is to identify ways to help patients improve their quality of life.
Angelman syndrome affects an estimated one in 12,000 to 20,000 people in the United States, according to the National Institutes of Health.
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