The challenges of caring for HDV-positive patients: a narrative medicine perspective

Hepatitis D is considered the most severe form of viral hepatitis in humans, and chronic HDV hepatitis patients typically show a more rapid progression to cirrhosis and a higher mortality. While awareness of the disease has increased, it still remains underdiagnosed and of challenging treatment. Besides the physical toll that an HDV infection takes, the psychological impact needs to be considered when treating the infected patients. The aim of this work is to assess the psychological course of the disease from the patient's point of view and the clinicians tasked with the treatment of this specific class of patients. Two surveys covering emotional perspectives about the suspect of the disease, the diagnosis, the therapy, and the relationship between physicians and patients were administered to the clinicians and the patients. The patients reported their journey starting from sentiments of discouragement and fear upon diagnosis, the challenges associated with the disease's symptoms and the therapies, which evolved into a story of endurance, coexistence with the disease, and hope for future scientific advancements. The clinicians reported their challenges in caring for HDV-positive patients, which span from the sub-optimal referral rate, and the lack of therapeutic options to the occasional absence of patient compliance. Although, at the same time they describe elements of satisfaction that come from the efficacy of some treatments and the possibility of the development of novel drugs. In conclusion, the psychological toll that hepatitis D has on patients should be one of the factors driving communication with the physicians.