Burden of Cluster Headache Not Well-Understood by Researchers

Burden of Cluster Headache Not Well-Understood by Researchers

A team of headache and public health experts recently highlighted the need for cluster headache specific research tools to better understand the burden of cluster headache on disability, quality of life, and socioeconomic factors.  Writing in the April 2020 issue of Headache, the authors note that despite the extreme severity of symptoms caused by cluster headache, few research studies have examined the lived experiences of cluster headache patients. The article points out the gaps in the existing research “with the hopes of stimulating future interest on this almost neglected topic.”  Improving our understanding of the personal and societal burden of cluster headache is critical to generating greater interest in the development of new treatments and funding clinical trials. 

Rationale and Study Design

The authors sought to examine three broad aspects of living with cluster headache:

  1. quality of life
  2. disability and impact
  3. socioeconomic burden

To conduct the review, the authors identified studies from 2002-2019 that used various tools and methods to explore the effects of cluster headache on patients’ lives.  Societal impacts included direct costs for diagnosis and treatment as well as indirect costs due to reduced productivity or unemployment.

Findings on Quality of Life & Disability

The studies included in the authors’ review reflect the following shortcomings in current methodology that hinder the assessment of the  burden of cluster headache impacts:

  • Studies have relied on either generic measures or migraine-specific tools that may not accurately capture the experiences of cluster headache patients with respect to physical and mental health.
  • The most common questionnaires used to address the impact of headaches on patients’ daily lives are validated in migraine only.
  • Typical assessment tools may not account for differences in disease patterns between episodic cluster headache (ECH) and chronic cluster headache (CCH), and some studies were performed only on medically refractory cluster headache patients.

Despite these flaws, the existing data suggest that quality of life measures are “markedly reduced in CH patients compared to normative values, controls, and migraineurs.”

Findings on Socioeconomic Impacts

The studies on socioeconomic impacts are “sparse” but reveal significant differences in the burden of cluster headache on patients compared with other headache disorders:

  • A major contributor to costs for cluster headache patients is the frequent need for abortive treatments such as triptans and oxygen – often used many times per day — rather than potentially less-costly preventive treatments.
  • In addition to high direct healthcare costs, cluster headache causes significant indirect costs due to many patients’ inability to maintain employment.

Implications for Patients

  • Considering the shortcomings in methodology and relative sparsity of studies, the authors’ review nevertheless supports the conclusion that “the CH-related level of disability appears to be greater than is experienced in subjects with other primary headache disorders.”
  • The authors found it noteworthy that “one of the most painful disorders known to mankind has not stimulated more research on daily aspects that appear to be severely affected by the CH symptoms[.]”
  • This stands in contrast to research in migraine, which has experienced “an enormous increase since the 1990s”, likely due to the higher prevalence of migraine and active international initiatives to address migraine impacts.
  • The existing evidence points to a “need to better understand the burden of CH, in order to stimulate further research on effective treatment strategies to better prevent the detrimental effects of this condition.”


D’Amico, D., Raggi, A., Grazzi, L., & Lambru, G. (2020).  Disability, Quality of Life, and Socioeconomic Burden of Cluster Headache: A Critical Review of Current Evidence and Future Perspectives.  Headache, 60(4), 809-818.  https://doi.org/10.1111/head.13784.

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