How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient–physician interaction

摘要: Abstract Objectives Empirical research shows that patients with severe illnesses prefer the physician to dominate decision processes and provide information needed. However, in rare diseases, due low prevalence lack of expertise, patient is forced become knowledgeable about his own disease state. this study were describe experiences patient–physician interaction develop an empirically derived typology patterns explore antecedents these patterns, a special focus on role behavior. Building results, implications for health care policy are made. Methods We designed exploratory as series semi-standardized interviews suffering from diseases. extracted following six diseases: amyotrophic lateral sclerosis, Duchenne muscular dystrophy, epidermolysis bullosa, Marfan syndrome, neurodegeneration brain iron accumulation Wilson's disease. A total 107 recorded, transcribed analyzed thematically accordance grounded theory tradition. Results As suggested, insufficient expertise healthcare providers proved be major problem highly specialized treatment process Here, often becomes expert Therefore, we identified patient-directed widely experienced communication pattern among Our also showed discrepancies have impact context. Conclusions People diseases face challenges, resulting knowledge their providers. Communication context mainly affected by behavior both provider. The present relevance provider's ability acknowledge active informed, involved interactive partner process. allowing control therapy may require change mind-set some long-standing traditional roles healthcare.