A questionnaire to measure the impact of cluster headaches

In a blog for Cluster Headache Awareness day, Ruth Ruscheweyh and Katharina Kamm introduce the Cluster Headache Impact Questionnaire (CHIQ) which aims to improve clinical care for cluster headache patients and promote cluster headache research.

Cluster headache, like migraine, is a primary headache. However, cluster headache is also very different from migraine. It affects more men than women – for migraines, it is the other way round. It manifests as relatively short (15 min to 3 hours) pain attacks always on the same side of the head. For comparison, migraine attacks last between 4 hours and 3 days.

The “suicide headache”

The most important difference is the severity of the attacks. Migraines can be severe, confining the patient to bed and making it impossible to perform tasks of the day. However, oftentimes, cluster headache attacks are not only severe, but excruciating. Therefore, cluster headaches are sometimes also described as “suicide headaches”. Many patients have the desire to bang their head against the wall during cluster headache attacks, and some will do so. In addition to this, patients can have several cluster headache attacks per day, and even worse, at night. We have been treating cluster headache patients for 15 years, and have always thought that they need our care and treatment even more than migraine patients do.

Too little research

However, cluster headaches are not as well-known as migraines. This is because they are much less prevalent, affecting about 0.1% of the population. Migraines affect about 10%.

Being affected by a rare disorder comes with a lot of disadvantages. Years may pass before finding a doctor who makes the correct diagnosis. There is less research, and consequently less knowledge on pathophysiology and effective treatments. There are also less tools for quantifying the disorder and its impact on the patients’ lives.

Number of attacks is only part of the picture

评估疾病对患者日常生活的影响对于理解相关的残疾很重要。在头痛和疼痛障碍中,我们现在知道,评估疼痛强度,持续时间,攻击频率和药物摄入量只是图片的一部分。另一部分是评估对患者生活的影响。

There is a wealth of questionnaires to assess migraine-related disabilities. Two of them, the Headache Impact Test (HIT-6) and the MIDAS (Migraine Disability Assessment Score) are among the most used both in clinical routine and research, because they are short, self-rated, and easily performed and scored. Such a questionnaire has been lacking for cluster headaches.

Development of the Cluster Headache Impact Questionnaire (CHIQ)

This is a gap that we aimed to close with the development and validation of the Cluster Headache Impact Questionnaire (CHIQ) that has now been published inThe Journal of Headache and Pain.

我们开发了一份8项问卷,不仅提出了一般问题,例如“您的头痛有多少限制了您的工作能力”,还包括特定于头痛的问题,例如由于夜间攻击和攻击期间的自我伤害行为,诸如睡眠剥夺和自我伤害行为。

We asked 254 patients to fill the CHIQ and other, related questionnaires. We successfully performed the usual steps to assess reliability and validity of the CHIQ. We found a good correlation between CHIQ scores and number of attacks per week, but also patients currently in remission (attack-free) had CHIQ scores above 0, showing that the impact of cluster headaches does not end when the attacks stop. This makes sense because most cluster headache patients suffer from a relapsing-remitting form called, episodic cluster headache. Therefore, the fear of relapsing, significantly contributes to disability.

Chiq分数与抑郁,焦虑和生活质量的相关性证实了群集头痛的影响也与这些方面有关。与通用头痛冲击问卷(HIT-6)的比较表明,CHIQ在评估簇头痛相关的残疾方面表现出色。

群集头痛患者迫切需要更多地注意自己的疾病。我们开发了Chiq,希望它能有助于两者,从而改善簇头痛患者的临床护理并促进簇头痛研究。

Ruth Ruscheweyh博士是德国慕尼黑路德维希·马克西米利人大学医院神经病学系的居民。她是德国偏头痛和头痛协会头痛注册表的负责人。她的研究兴趣一方面是头痛和疼痛的患者报告的结果和心理因素,另一方面是降钙素基因相关的肽(CGRP),另一方面对疼痛抑制作用。

Dr. Katharina Kamm is a resident at the Department of Neurology of the LMU University Hospital and at the Upper Bavarian Headache Center of the LMU University Hospital Munich, Germany. Her research focuses on primary headache disorders. In this respect, she is especially interested in cluster headache as well as the role of calcitonin gene-related peptide in migraine and cluster headache.

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