Focus Groups Highlight Need for Patient Input in Diagnosis, Treatment

Focus Groups Highlight Need for Patient Input in Diagnosis, Treatment

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Focus Groups Highlight Need for Patient Input in Diagnosis, Treatment

In focus groups, transthyretin (ATTR) amyloidosis patients and families reported challenges and concerns related to the odyssey of getting a diagnosis, the effect of symptoms on quality of life, and the familial impact of the rare inherited disease. The study, which included people with familial amyloid polyneuropathy (FAP) and ATTR with cardiomyopathy (ATTR-CM), concluded that increased physician education around the disorders, access to mental health support, and engagement with support and advocacy groups would help…

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