Emotional journey of patients with specified intractable diseases in Japan

This study aimed to depict the emotional journey of Japanese patients with specific intractable diseases facing challenges associated with a delayed diagnosis. Specifically, our focus was on elucidating the emotional journey of patients and identifying the unmet needs caused by a delayed diagnosis. We conducted a web-based survey targeting 179 patients with 11 specified intractable diseases. They reported their emotional states during each journey phase using a 10-point scale. The results revealed that the period from noticing bodily changes to clinic visits was characterized by the most negative emotional states. Furthermore, the patients experienced a gradual shift towards positive emotional states as they decided to complete a consultation at a specialized hospital. They reached their most positive emotional states when they received a definitive diagnosis, subsequent treatment, and care. The thematic classification of emotional changes at the time of definitive diagnosis showed that "relief" was the most prevalent emotion (41.9%), followed by "no change" (19.9%), "anxiety" (14.0%), "shock" (13.4%), and "resignation" (6.5%). Additionally, when classifying the thematic changes in emotions during the period of bodily changes and clinic visits, "frustration" was the most common (51.3%), followed by "fear and anxiety" (43.6%). Patients tended to be most psychologically distressed during the period leading up to the definitive diagnosis. These results reveal that patients with intractable diseases are seeking a fast and accurate diagnosis, and that achieving these is a key unmet need for the patients.