The impact of the disease burden on the quality of life of cluster headache patients

Background: Cluster headache cannot be cured, and not all attacks can be aborted or prevented. Nevertheless, therapeutic guidelines focus solely on the attacks and ignore reverberations of the disorder on patients’ lives. However, it is likely that not only pain reduces patients’ quality of life (QoL). Objective: To investigate whether the interictal burden independently influence the QoL of subjects suffering from cluster headache. Methods: In this cross-sectional study, we asked patients with a self-reported cluster headache diagnosis to answer a modified EUROLIGHT questionnaire that included the EURO-HIS QoL scale. We built a generalised linear model and included the QoL as the dependent variable. Independent variables comprised both the ictal and the interictal burden. Results: The data of 625 participants entered the analysis. Several aspects of the interictal burden independently reduced the QoL. Among them were fear of pain, self-concealment, and private life difficulties due to the disorder. Conclusion: Both the ictal and the interictal burden of cluster headache independently reduce patients’ QoL. We advocate adopting a more holistic approach to cluster headache management extending the focus towards the afflicted person and their QoL, which would generate novel therapeutic goals and strategies, complementary to treating and preventing cluster headache attacks