Abstract:
:Living with a rare disease can present unique challenges not shared by individuals with common diseases. A content analysis explored which challenges, in participants' own words, are most prevalent across a sample of individuals ( n = 1157) with diverse rare diseases in the United States. Symptoms, activity limitations, treatments, uncertainty, and companionship support were mentioned most. Differences across the most frequently mentioned codes were found among disease types, gender, income, years since diagnosis, and symptom duration. Results suggest a need for improved medical care to reduce activity limitations, increased awareness, social support, and access to information for people with rare diseases.
journal_name
J Health Psycholjournal_title
Journal of health psychologyauthors
Bryson B,Bogart K,Atwood M,Fraser K,Locke T,Pugh K,Zerrouk Mdoi
10.1177/1359105319828150subject
Has Abstractpub_date
2019-02-21 00:00:00pages
1359105319828150eissn
1359-1053issn
1461-7277pub_type
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