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Healthcare Access, Satisfaction, And Health‑Related Quality Of Life Among Children And Adults With Rare Diseases, Amanda Hemmesch, Kathleen Bogart, Erica Barnes, Thomas Blissenbach, Arthur Beisang, Patti Engel, Chloe Barnes Advisory Council On Rare Diseases
Healthcare Access, Satisfaction, And Health‑Related Quality Of Life Among Children And Adults With Rare Diseases, Amanda Hemmesch, Kathleen Bogart, Erica Barnes, Thomas Blissenbach, Arthur Beisang, Patti Engel, Chloe Barnes Advisory Council On Rare Diseases
Psychology Faculty Publications
Background: Research in a variety of countries indicates that healthcare access and health-related quality of life are challenged among people with a variety of rare diseases (RDs). However, there has been little systematic research on the experiences of children and adults with RDs in the American healthcare system that identifies commonalities across RDs. This research aimed to: (1) Describe demographics, disease characteristics, diagnostic experiences, access to healthcare, knowledge about RDs, support from healthcare professionals, and patient satisfaction among people with RDs and their caregivers; (2) examine predictors of patient satisfaction among adults with RDs; (3) compare health-related quality of life …