OSU study finds people with rare diseases have poorer health-related quality of life

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A recent Oregon State University study found that people with rare diseases often wait years to get a proper diagnosis, travel long distances for specialized treatment, and face healthcare costs.

The study concluded that this combination of challenges in accessing appropriate medical care results in poor health-related quality of life, low patient satisfaction, and high levels of anxiety, depression, and stigma.

A key factor in addressing these challenges is the continuing education of medical professionals, said Kathleen Bogart, one of the lead authors and an associate professor of psychology at OSU.

“A key area of ​​intervention is ensuring that healthcare providers have common knowledge about rare diseases,” Bogart said. “We don’t expect to know all 7,000 of you, but we hope to glean some clues from you that you’re not dealing with a common condition or a condition that can be easily diagnosed.”

When a doctor sees a patient who’s been searching for years without success for a diagnosis, that should trigger a different approach, she said — not the doctor sending the patient home with the conclusion they’ll get help. Nothing can be done

According to the National Institutes of Health, a disease is considered “rare” if it has fewer than 200,000 cases in the United States. Overall, they affect about 1 in 10 Americans.

For the study, researchers surveyed 1,128 rare disease patients and parents of children with rare diseases from across the country. Participants answered questions about their process of getting a diagnosis, how they were informed they had a healthcare provider, their own knowledge of their illness, their insurance coverage, whether they were adequately supported in their daily life. felt and what kind of stigma they experienced.

Researchers also included a questionnaire to assess patients’ health-related quality of life, asking about physical function, fatigue, depression, anxiety, sleep, pain, and ability to participate in daily activities.

The time between symptom onset and diagnosis was one of the most surprising findings: 16% of people waited 10 or more years for an accurate diagnosis, while 17% waited between four and nine years.

Participants also reported seeing multiple providers to confirm that diagnosis: 38% saw two or three providers, 24% saw four or five providers, and 5% saw more than 15 providers before being diagnosed. seen. Almost half said they had traveled more than 60 miles to seek treatment for their rare disease.

Patients generally had much poorer ratings for their original provider than providers who could correctly diagnose them, and often reported that they did not feel their original provider was researching or diagnosing various possible diseases. I was willing to ask other vendors for help.

The study also asked patients about access to dental and mental health care. While the majority of respondents felt their medical care was adequate after receiving a diagnosis, they reported inadequate dental and mental health care. Rare diseases, which often require specialized dental care, are hard to find; And mental health providers rarely receive training on rare diseases, Bogart said.

The study began in collaboration with the state of Minnesota’s Chloe Barnes Advisory Council on Rare Diseases, which was established to work on legislative measures addressing factors such as insurance coverage and provider education.

Bogart expects more states to set up rare disease councils, including Oregon. The Council is working to learn more about the top challenges facing rare disease patients and to build resources for providers to help guide them through rare diagnoses.

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