The economic and personal burden of cluster headache: a controlled cross-sectional study

Abstract

Background: Cluster headache is a less-prevalent primary headache disorder but is overrepresented with regards to use of health care and social services. More insight into the socioeconomic impact is required.

Methods: We investigated both the personal and societal disease burden and cost in 400 patients with well-classified cluster headache according to the ICHD-criteria and 200 sex- and age matched controls. All participants completed a cross sectional questionnaire and semi-structured interview.

Results: Patients with chronic cluster headache constituted 146 out of 400 (37%). Overall, restriction in personal and/or professional life was reported by 94% of patients during attack periods. Even in remission, nine times as many episodic patients rated their health as poor/very poor compared to controls (9% vs 1%, p = 0.002). For chronic patients, the odds of rating health as good/very good were ten times lower compared to controls (OR:10.10, 95%CI:5.29-18.79. p < 0.001) and three times lower compared to episodic patients in remission (OR:3.22, 95%CI:1.90-5.47, p < 0.001). Additionally, chronic cluster headache patients were 5 times more likely to receive disability pension compared to episodic (OR:5.0, 95%CI:2.3-10.9, p < 0.001). The mean direct annual costs amounted to 9,158€ and 2,763€ for chronic and episodic patients, respectively (p < 0.001). We identified a substantial loss of productivity due to absence from work resulting in a higher indirect cost of 11,809 €/year/patient in the chronic population and 3,558 €/year/patient in the episodic population. Presenteeism could not be quantified but productivity was reduced in patients by 65% in periods with attacks compared to controls.

Conclusion: Cluster headache has a major negative impact on personal life, self-perceived health, and societal cost. Patients with the chronic variant are vastly more burdened. Patients with the episodic form were still markedly affected during the remission period. This study highlights the need for more effective therapy to lighten the burden on patients and society.

Keywords: Burden of disease; Cluster headache; Direct cost; Indirect cost; Quality of life.

Fig. 1

Flowchart of inclusion. Data presented for 400 patients with cluster headache. Means (SD) are based on the entire population, not only the patients receiving the specific healthcare service or social benefit. Underneath the cost the patients who received the service or benefit within the last year are indicated. The costs were not normally distributed, and we therefore applied the non-parametric Wilcoxon test. Some total costs do not total the sum of the means due to rounding

Fig. 2

Self-rated health among patients with cluster headache and controls. Legend: Patients and controls were asked to rate their current health (N = 599). Patients in bout were defined as having a cluster headache attack within the last month. We dichotomized participants responding poor or very poor as poor and good or very good as good to increase power in an ordinal logistic regression adjusted for occupation and gender. Chronic cluster headache was the reference. Episodic cluster headache in bout were statistically indifferent to the chronic patients (OR 1.57, 95%CI 0.96–2.57, p = 0.074), The episodic cluster headache in remission were statistically different from the chronic patients (OR 3.22, 95%CI 1.90–5.47, p < 0.001), as were the controls (OR 10.10, 95%CI 5.29–18.79. p < 0.001)

Fig. 3

Negative impact of cluster headache on professional, social and family life. Legend: Self-reported impact of cluster headache on different aspects of everyday life. Data presented for 399 chronic and episodic cluster headache patients. Bonferroni correction was applied. *** p ≤ 0.001, NS Not significant