Disability, Quality of Life, and Socioeconomic Burden of Cluster Headache: A Critical Review of Current Evidence and Future Perspectives

Abstract

Objective To summarize the available evidence on disability, quality of life (QoL), and economic burden on societies of cluster headache (CH), and to present which tools have been used to measure these domains with indications for future research. Background CH is a rare and severe primary headache. The focus of research on this disorder has historically been on understanding its complex pathophysiological mechanisms, whereas personal and global healthcare impact, disability, and QoL received little attention. Methods We reviewed the available literature published up to 2019, identifying primary research addressing QoL, disability, impact, or impairment in daily life due to episodic CH (ECH) or chronic CH (CCH), and its societal impact. Results CH produces a significant impact on sufferers QoL, disability, and work‐related aspects, with a stronger impact on CCH than ECH. The CH‐related disability appears to be greater than is seen in subjects with other primary headache disorders. Conclusions Information about patient‐reported outcomes is rarely collected in patients with CH. An effort to improve the amount of information on the lived experience of patients with CH is needed and CH‐specific disability and QoL measures require development.

Effect of calcitonin gene-related peptide (-receptor) antibodies in chronic cluster headache: Results from a retrospective case series support individual treatment attempts

“…Cluster headache is characterised by excruciatingly painful side-locked headache attacks with ipsilateral cranial autonomic symptoms and restlessness, often recurring several times a day. It has a prevalence of $0.1%, a male preponderance, and is one of the primary headache disorders associated with the highest disability, especially in its chronic form (1)(2)(3). Chronic cluster headache (CCH) affects 10-15% of cluster headache patients and is defined by attacks ongoing for !1 year, with attack-free periods lasting <3 months (4,5).…”

Meta‐analysis of melatonin levels in cluster headache—Review of clinical implications

“…4,5 Despite its low prevalence compared with migraine and tension-type headache, 6 CH is a debilitating primary headache disorder with substantial personal and healthcare impact that requires effective treatment and prevention. 7,8 Preventive medications (verapamil and lithium are considered the primary options) present a number of contraindications and adverse events that may impede their use, while many cases prove refractory to the initial approach and require the administration of additional medications, warranting the investigation for additional candidates to enhance our armamentarium in the management of CH. 9 Exogenous melatonin (MT) constitutes a relatively safe treatment option 10,11 that has provided encouraging results in the prevention of PHDs including individuals with CH.…”

The sensitivity to change of the cluster headache quality of life scale assessed before and after deep brain stimulation of the ventral tegmental area

“…Specific measures to assess QoL are lacking and assessment of quality of life in this population is currently limited to the use of a combination of tests including generic quality of life scales such as the SF-36 [ 4 ]. However, these measures might not be specifically sensitive for CH and might, for example, fail to discriminate between CH patients and migraineurs, highlighting the need for a specific scale to assess QoL in CH [ 5 ].…”