Emotions at diagnosis in patients with bullous diseases

Diagnosis of a severe condition may have a strong emotional impact on patients. Specific emotions experienced when receiving the diagnosis of a bullous disease have not been investigated.

Adult patients diagnosed with a bullous condition were recruited through the Italian Association of patients with pemphigus and pemphigoid (ANPPI). Information was collected online on sociodemographic and clinical data. We asked which emotions the patient experienced at the time of the diagnosis, i.e., isolation, anger, confusion, sadness, despair, disregard, fear, avoidance, and challenge. Also, the patients reported to whom they talked as soon as they had the diagnosis.

Data were collected on 105 patients, most of whom were affected by pemphigus vulgaris. The emotion most frequently experienced at diagnosis was confusion (47.6% of patients). More than 30% of patients reported sadness and fear, 12.5% anger, and 10.5% despair. A significantly higher percentage of women than men experienced isolation and despair. Despair was more frequent in patients who were older at diagnosis. Patients with children experienced more sadness and despair, and less avoidance and challenge, while those who had a relative with a bullous disease reported less fear, and more challenge.

Clinicians should be aware of the emotions of the patient when communicating the diagnosis of severe conditions, such as bullous diseases. Active listening and empathy are necessary to provide patients with correct information on the disease, so that they are not overwhelmed with negative emotions.