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

Empirical research shows that patients with severe illnesses prefer the physician to dominate decision processes and provide the information needed. However, in rare diseases, due to the low prevalence and the lack of expertise, the patient is forced to become knowledgeable about his own disease state. Objectives of this study were to describe the experiences of patient–physician interaction in rare diseases, to develop an empirically derived typology of interaction patterns and to explore the antecedents of these interaction patterns, with a special focus on role behavior. Building on these results, implications for health care policy are made.