Beyond diagnosis: subjective theories of illness in adult patients with acute myeloid leukemia

Every acute myeloid leukemia (AML) patient asks: why me? But from the patients' perspective, there are no objective medical causes and no clear picture of AML. However, based on these missing medical answers, patients develop their own ideas about illness and treatment. These subjective theories of illness (STOI) are defined as the cognitive constructions ill people make regarding: (1) the nature of their disease; (2) its source; and (3) its treatment. STOI present a challenge for the physician-patient relationship. After the first interim staging, 12 patients with AML were interviewed. Case analyses were assigned to interindividual comparisons representing the predefined subject areas of STOI. Patients' vague subjective conceptions about the personalized etiology of AML resulted not only from health literacy deficits but also from their avoiding medical information to protect themselves from negative emotions. Through STOI, patients significantly co-determine the selection of (un-)conscious coping strategies with consequences for physician-patient communication.