Living With Cluster Headache: A Qualitative Study of Patients' Perspectives

Our aim was to explore the views and experiences of a group of Spanish men suffering from cluster headache (CH).

CH has considerable effects on patients' quality of life, impairs everyday activities, and can modify lifestyle. This is the first time the experience of patients with CH is examined in a clinical study using a qualitative, phenomenological approach.

We conducted a qualitative phenomenological study exploring how 20 male patients with CH, followed at the Headache Unit of a Spanish hospital, perceived their disease. Data were collected through in-depth interviews, researchers' field notes and patients' personal letters. A systematic text condensation analysis was performed following appropriate guidelines for qualitative research.

Mean age was 41.15 years (standard deviation, 11.25). Seventeen patients had episodic CH and three patients had chronic CH. Five main themes describing the significance of suffering CH emerged: (a) meaning of disease, (b) experience of attacks, (c) meaning of treatment, (d) healthcare, and (e) social and family interaction. Patients with CH often live in fear and uncertainty because of their condition. Intensity and frequency of attacks, the use of ineffective treatments, skepticism perceived from social and workplace environments and physician unawareness play a significant role.

Qualitative research offers insight into the way CH patients experience their disease, and may be helpful in establishing a fruitful relationship with these patients.