Cluster Headache: An Economic, Professional, and Personal Burden – A Data Visualization

This Migraine Science Collaborative data visualization depicts the effects of cluster headache on professional, social and family life, and on healthcare costs. How these effects differ between chronic cluster headache and episodic cluster headache is a particular focus.

Cluster headache is one of the most painful conditions a person can ever experience. How does this condition affect the lives of those who suffer from it? Building upon previous research, investigators from the Danish Headache Center at the University of Copenhagen in Denmark now address that question from a number of angles, in a recent study whose data serve as the basis for this Migraine Science Collaborative data visualization.

In addition to identifying the effects of cluster headache on an individual’s professional, social and family life, first author Anja Petersen and colleagues were interested to learn about the health care costs that cluster headache entails. In their cross-sectional study of 400 people with cluster headache and 200 healthy control subjects, they also asked how the effects of episodic cluster headache compare to those of chronic cluster headache. The former refers to headaches that last from one week to one year, separated by pain-free periods of at least three months, while those with chronic cluster headache have headache attacks for a year or longer without remission, or remission of less than three months, according to the International Classification of Headache Disorders.

The investigators reported, in the Journal of Headache and Pain on May 24, 2022, that both chronic and episodic headache – even episodic headache in remission – have substantial impacts on professional, social and family life, and carry significant health care costs. However, as one would expect, the impact of chronic cluster headache consistently outpaced that of the episodic variety.

Take a look at the data visualization below to learn more.

The first panel of the visualization, above, shows that a greater percentage of people with cluster headache rate their health as very poor/poor than healthy controls do. This is particularly the case for chronic cluster headache and episodic cluster headache in bout (active periods of headache attacks).

Meanwhile, while 92% of healthy controls rated their health as good/very good, only a little over a third of chronic cluster headache patients did so. The study authors point out that episodic cluster headache patients in remission had three times the odds of rating their health as good/very good, and healthy controls 10 times the odds, compared to chronic cluster headache patients.

The second panel of the visualization, above, shows the effects of cluster headache on various aspects of professional life in the first 10 years after the onset of headache. These data are based on responses from 158 people with episodic or chronic cluster headache. Chronic cluster headache had the biggest impact on various aspects of professional life, especially an overall impact on work life, deselecting certain jobs or assignments, and changing workplace. About one-quarter of episodic cluster headache patients indicated an overall impact on work life, and about one-third deselected certain jobs or assignments.

Similar to panel two, panel three, above, takes a look at aspects of professional life but also social and family life. This analysis included a larger sample size of 399 people with chronic or episodic cluster headache.

All of the impacts on professional, social and family life depicted in this panel were significantly greater for chronic cluster headache, compared to the episodic variety. The overall size of each donut chart corresponds to the percentage of people affected by chronic cluster headache and episodic cluster headache. For instance, opting out of celebrations/outings, which is the largest donut chart, affected the highest percentage of people (close to 80% of those with chronic cluster headache, and roughly 50% of those with episodic cluster headache). Being on disability pension affected the lowest percentage of cluster headache patients (the smallest donut chart).

Finally, panel four, above, shows the health care costs (one-year average cost, in euros per patient) associated with chronic versus episodic cluster headache (the first two donut charts). The third donut chart depicts the one-year average cost, in euros per patient, for all headache (episodic plus chronic, reaching a total of 400 study participants). The costs include direct costs, as well as indirect costs (sick days and disability pension).

For each type of headache cost, hover your cursor over the donut chart to view the precise costs in euros per patient.

As the size of the donut charts indicates, chronic cluster headache incurs greater costs than episodic cluster headache, for each type of cost. Disability pension and triptans were the top two highest costs for each type of headache.

When looking at total annual direct cost per patient (everything except sick days and disability pension), the difference between chronic (9,158 euros) and episodic (2,763 euros) cluster headache was 6,395 euros. For total annual indirect costs per patient (sick days and disability pension), the difference between chronic and episodic cluster headache was more than 8,000 euros.

The authors aptly summarize in their paper what all the findings from their study mean:

“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.”

Reference/Data Source:
The economic and personal burden of cluster headache: a controlled cross-sectional study.
Petersen et al.
J Headache Pain. 2022 May 24;23(1):58. doi: 10.1186/s10194-022-01427-7.

Neil Andrews is a science journalist and executive editor of the Migraine Science Collaborative. Follow him on Twitter @NeilAndrews