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.

Transition of cluster headache phenotype: An interview-based study

“…Concordant with previous studies and supporting the theory of social drifting (19), the pCCH group had the highest prevalence of low education. Interestingly, the majority of patients within all four groups had a high level of education, opposing a prior reported reduced educational level in CH patients (17). A plausible explanation could be selection bias or the cross-sectional nature of the study, where a proportion of the patients have been interviewed before commencement or completion of an education.…”

“…These findings are in line with prior estimates of comorbid depression in 32% of the CH population in the Danish Cluster Headache Survey (16). No prior studies or clinical experience lead us to believe that there is a causal pathway from psychiatric disease to developing CH, and the finding could rather be interpreted as a confirmation of the significantly increased personal burden in CH-patients (4,17,18).…”

Infodemiology of cluster headache seasonality: A proof of concept by a Google Trends analysis

“…Although patients with chronic CH are vastly more affected than patients with the episodic form, the latter are still burdened during the remission period. 3 Indeed, in its episodic form, CH occurs in so-called cluster-bout periods with almost daily attacks separated by remission periods lasting more than 3 months. 4 A fascinating although not fully explained aspect of episodic CH is the peculiar temporal presentation pattern of attacks occurring more frequently or severely during specific times of the day, according to a circadian trend which has drawn pathophysiological considerations of the involvement of the hypothalamus, the brain's "biological clock."…”

“…A recent cross‐sectional study highlighted the negative impact of CH on personal life, self‐perceived health, and societal cost. Although patients with chronic CH are vastly more affected than patients with the episodic form, the latter are still burdened during the remission period 3 . Indeed, in its episodic form, CH occurs in so‐called cluster‐bout periods with almost daily attacks separated by remission periods lasting more than 3 months 4…”

Cluster Headache: Epidemiology, Pathophysiology, Clinical Features, and Diagnosis

“…Further to the personal burden, cluster headache imposes a substantial economic burden. A recent paper by Petersen and colleagues found a significant loss in output from missed work, which resulted in indirect costs of €11,809 per patient per year for the chronic subtype and €3,558 per patient per year for episodic subytype 9 . The indirect costs and direct costs of the disorder were significantly higher for chronic patients, perhaps due to the greater disability.…”