Cluster Headache and the Comprehension Paradox.

Patients with primary headache disorders such as cluster headache cycle between being entirely healthy and almost completely incapacitated. Sick leave or reduced performance due to headache attacks demands flexibility by their social counterparts. The objective of this study is to test the hypothesis that headache patients cause frustration that grows with the times colleagues have to take over their work. In this study, we analysed cluster headache patients' answers to an online questionnaire. Participants self-reported their number of sick days, the number of days on which leisure activities were missed and whether they felt understood by colleagues and family. We then investigated the correlation between the number of sick days and the proportion of patients feeling understood by colleagues and friends. We found that feeling understood by colleagues and friends decreases with a growing number of sick days. However, when sick days accrue further, this proportion increases again. The number of sick days correlates similarly with both colleagues' and friends' understanding. The number of cluster headache patients feeling understood by others decreases with an increasing number of sick days. Their social circles' frustration with the patients' failure to meet obligations and expectations are a likely reason. With a growing number of sick days, however, the portion of patients feeling understood rises again despite patients meeting others' expectations even less. This 'comprehension paradox' implies the influence of other factors. We suspect that growing numbers of sick days foster understanding as the disability of the disease becomes increasingly apparent.

Dealing with Headache: Sex Differences in the Burden of Migraine- and Tension-Type Headache.

OBJECTIVE: The aim of this study was to investigate sex differences in the burden of migraine and tension-type headache (TTH). BACKGROUND: Migraine and TTH are more common in women than in men, with differences in comorbidities, treatment responses, disease-modifying factors, and ictal and interictal burden of disease. Information about sex-related influences on ictal and interictal burden is limited, and an increased understanding is mandatory to provide tailored individual treatment for female and male patients. METHODS: Participants answered an online survey based on the EUROLIGHT questionnaire. Inclusion criteria were the consent to participate, complete responses to the diagnostic questions, and information about their sex. Sex differences were investigated using the Mann-Whitney U test or Chi-square test. For detecting factors that influence the burden of disease, we built binary regression models. RESULTS: We included 472 (74.6% female) migraineurs and 161 (59.6% female) participants with TTH. Women with migraine reported significantly more problems in their love lives, more self-concealment, less feelings of being understood by family and friends, more interictal anxiety, a higher pain severity, and more depression and anxiety symptoms than men. For TTH, we did not find significant sex-related differences. A higher headache frequency was the factor that increased the burden of disease in female but not in male migraneurs. CONCLUSION: The burden of disease was higher in women than men with migraine in many aspects, but not with TTH. Therefore, according to our results, there is a need for sex-specific precision medicine for migraine but not TTH. Controlling the headache frequency with a proper acute or prophylactic treatment and treating comorbid depression and anxiety symptoms is crucial to ease migraine's burden, especially in women.

[Smarter Medicine in Headache Care - presentation and discussion of 5 recommendations]. / Smarter Medicine in Diagnose und Behandlung von Kopfschmerzen.

Smarter Medicine in Headache Care - presentation and discussion of 5 recommendations Abstract. An unequivocal headache diagnosis cannot always be made. The lack of diagnostic tests able to prove primary headaches often prompts physicians to perform unnecessary examinations to reduce their uncertainty. When setting out the therapeutic strategy, again, insecurity often leads to mendable choices. In this Delphi study, members of the therapy commission of the Swiss Headache Society collected, rated, and re-rated doubtful and questionable procedures. Five recommendations that resulted from this survey are presented and reviewed in this article. The recommendations are: (A) no repeated cerebral imaging in headaches with unchanged phenotype; (B) no computed tomography in the work-up of non-acute headaches; (C) no tooth extraction to treat persistent idiopathic facial pain, (D) no migraine surgery; (E) no removal of amalgam fillings to treat headache disorders.

Interictal Burden of Cluster Headache: Results of the EUROLIGHT Cluster Headache Project, an Internet-Based, Cross-Sectional Study of People With Cluster Headache.

OBJECTIVE: The aim of this study was to measure the interictal burden (IIB) associated with cluster headache (CH). BACKGROUND: CH is characterized by an alternation of excruciatingly painful attacks and pain-free periods. Absence of pain does not necessarily imply absence of symptoms, though. Some may persist or improve more slowly than pain; others may arise in between attacks. METHODS: Participants filled out an online survey based on the EUROLIGHT questionnaire. Inclusion criteria were a reported diagnosis of CH and residency in a European country; exclusion criteria were refusal to give informed consent and to complete the questionnaire. RESULTS: Most of the burden was related to higher headache frequencies: ongoing symptoms despite pain freedom, impaired autonomy due to avoidance of triggers, reluctance to tell others about the disease, and the feeling of not being understood by family and friends, employers and colleagues. Irreversible, potentially accumulating burden may occur if headache frequency is high; examples are impairment of career options, relationships, and family planning issues. Worrying about future attacks and avoiding potential triggers occur independently from attack frequency and disease duration. There were no differences between the in-bout and the out-bout period among participants with episodic CH. Participants with chronic CH reported greater IIB. CONCLUSIONS: Even between attacks CH can have a huge and potentially irreversible impact on life. Different types of IIB were identified, all of which may contribute to the total burden of disease. As cumulative burden might be irreversible, prevention strategies need to be developed.

Prevalence and burden of headache disorders in Lithuania and their public-health and policy implications: a population-based study within the Eurolight Project.

BACKGROUND: The Eurolight project assessed the impact of headache disorders in ten EU countries, using the same structured questionnaire but varying sampling methods. In Lithuania, sample selection employed methods in line with consensus recommendations for population-based burden-of-headache studies. METHODS: The survey was cross-sectional. We identified, from the Residents' Register Service, a sample of inhabitants of Kaunas city and surrounding Kaunas region reflecting age (in the range 18-65 years), gender and rural/urban distributions of Lithuania. Medical students called unannounced at their homes and conducted face-to-face interviews employing a structured questionnaire. RESULTS: Of 1137 people in the pre-identified sample, 573 (male 237 [41.4%], female 336 [58.6%]; mean age 40.9 ± 13.8 years) completed interviews (participation proportion: 50.4%). Gender-adjusted 1-year prevalences were: any headache 74.7%; migraine 18.8%; tension-type headache (TTH) 42.2%; all headache on ≥15 days/month 8.6%; probable medication-overuse headache (pMOH) 3.2%. Migraine (OR: 3.6) and pMOH (OR: 2.9) were associated with female gender. All headache types except TTH were associated with significantly diminished quality of life. Migraine caused a mean 4.5% loss in paid worktime per affected male and 3.5% per affected female. Lost per-person times due to TTH were much less, but to pMOH and other headache on ≥15 days/month much higher. Among the entire workforce, lost productivity to migraine was estimated at 0.7%, to TTH 0.3% and to pMOH or other headache on ≥15 days/month 0.5%. The total of 1.5% may translate directly into lost GDP. Alternative calculations based on headache yesterday (with little recall error) produced, for all headache, a corroborating 1.7%. Similar losses from household work would also drain the nation's economy. Our findings were comparable to those from earlier studies using similar methods in Russia and Georgia. CONCLUSIONS: The multiple burdens from headache in Lithuania indicate substantial ill-health and unmet need for health care. The heavy burdens on individuals are matched by heavy economic burden. Of particular concern is the high prevalence of headache on ≥15 days/month, seen also in Russia and Georgia. Health policy in Lithuania must heed WHO's advice that effective treatment of headache, clearly desirable for its health benefits, is also expected to be cost-saving.

Headache, depression and anxiety: associations in the Eurolight project.

BACKGROUND: Headache disorders and psychiatric disorders are both common, while evidence, mostly pertaining to migraine, suggests they are comorbid more often than might be expected by chance. There are good reasons for establishing whether they are: symptoms of comorbid illnesses may summate synergistically; comorbidities hinder management, negatively influencing outcomes; high-level comorbidity indicates that, where one disease occurs, the other should be looked for. The Eurolight project gathered population-based data on these disorders from 6624 participants. METHODS: Eurolight was a cross-sectional survey sampling from the adult populations (18-65 years) of 10 EU countries. We used data from six. The questionnaire included headache-diagnostic questions based on ICHD-II, the Headache-Attributed Lost Time (HALT) questionnaire, and HADS for depression and anxiety. We estimated odds ratios (ORs) to show associations between migraine, tension-type headache (TTH) or probable medication-overuse headache (pMOH) and depression or anxiety. RESULTS: pMOH was most strongly associated with both psychiatric disorders: for depression, ORs (vs no headache) were 5.5 [2.2-13.5] (p < 0.0001) in males, 5.5 [2.9-10.5] (p < 0.0001) in females; for anxiety, ORs were 10.4 [4.9-21.8] (p < 0.0001) and 7.1 [4.5-11.2] (p < 0.0001). Migraine was also associated with both: for depression, ORs were 2.1 [1.3-3.4] (p = 0.002) and 1.8 [1.1-3.1] (p = 0.030); for anxiety 4.2 [2.8-6.3] (p < 0.0001) and 2.4 [1.7-3.4] (p < 0.0001). TTH showed associations only with anxiety: ORs 2.5 [1.7-3.7] (p < 0.0001) for males, 1.5 [1.1-2.1] (p = 0.021) for females. Participants with migraine carried 19.1 % probability of comorbid anxiety, 6.9 % of depression and 5.1 % of both, higher than the representative general-population sample (14.3, 5.6 and 3.8 %). Probabilities in those with MOH were 38.8, 16.9 and 14.4 %; in TTH, they did not exceed those of the whole sample. Comorbid psychiatric disorder did not add to headache-attributed productive time losses, but weak associations existed (R (2) = 0.020-0.082) for all headache types between lost productive time and probabilities of depression and, less so, anxiety. CONCLUSION: In this large study we confirmed that depression and especially anxiety are comorbid more than by chance with migraine, and showed the same is true, but more strongly, with MOH. Arguably, migraine patients and, more certainly, MOH patients should be screened with HADS in pursuit of best outcomes.

Interictal burden attributable to episodic headache: findings from the Eurolight project.

BACKGROUND: Most primary headaches are episodic, and most estimates of the heavy disability burden attributed to headache derive from epidemiological data focused on the episodic subtypes of migraine and tension-type headache (TTH). These disorders give rise directly but intermittently to symptom burden. Nevertheless, people with these disorders may not be symptom-free between attacks. We analysed the Eurolight dataset for interictal burden. METHODS: Eurolight was a cross-sectional survey using modified cluster sampling from the adult population (18-65 years) in 10 countries of the European Union. We used data from nine. The questionnaire included headache-diagnostic questions based on ICHD-II and several question sets addressing impact, including interictal and cumulative burdens. RESULTS: There were 6455 participants with headache (male 2444 [37.9 %]). Interictal symptoms were reported by 26.0 % of those with migraine and 18.9 % with TTH: interictal anxiety by 10.6 % with migraine and avoidance (lifestyle compromise) by 14.8 %, both much more common than in TTH (3.1 % [OR 3.8] and 4.7 % [OR 3.5] respectively). Mean time spent in the interictal state was 317 days/year for migraine, 331 days/year for TTH. Those who were "rarely" or "never" in control of their headaches (migraine 15.2 %, TTH 9.6 %) had significantly raised odds of interictal anxiety, avoidance and other interictal symptoms. Among those with migraine, interictal anxiety increased markedly with headache intensity and frequency, avoidance less so but still significantly. Lost productive time was associated with high ORs (up to 5.3) of anxiety and avoidance. A third (32.9 %) with migraine and a quarter (26.7 %) with TTH (difference: p < 0.0001) were reluctant to tell others of their headaches. About 10 % with each disorder felt families and friends did not understand their headaches. Nearly 12 % with migraine reported their employers and colleagues did not. Regarding cumulative burden, 11.8 % reported they had done less well in education because of headache, 5.9 % reported reduced earnings and 7.4 % that their careers had suffered. CONCLUSIONS: Interictal burden in those with episodic headache is common, more so in migraine than TTH. Some elements have the potential to be profoundly consequential. New methodology is needed to measure interictal burden if descriptions of headache burden are to be complete.

Prevalence, management and burden of episodic and chronic headaches--a cross-sectional multicentre study in eight Austrian headache centres.

BACKGROUND: Episodic and chronic headaches (EH, CH) are highly prevalent disorders. Severely affected patients are usually referred to headache centres. In Austria, at least one headache centre is available in seven of nine states, but detailed multicentre data are missing. Therefore we studied prevalence rates, use of medication and health care services, impact of headaches, and comorbid depression and anxiety. METHODS: We included consecutive patients from eight Austrian outpatient headache centres. The patients filled-in the Eurolight questionnaire. In addition, the treating neurologist completed a questionnaire on clinical diagnoses and ever-before prophylactic medications. RESULTS: Of 598 patients screened, 441 questionnaires were analysed (79 % female, mean age 41.1 years). According to the Eurolight algorithm, 56.4 % of the patients had EH, 38.3 % had CH and 5.2 % did not give their headache frequency. The prevalence rates of migraine, tension-type headache, and probable medication overuse headache (pMOH) were 48.5 %, 6.3 % and 15.9 %, respectively. The concordance between clinical and Eurolight diagnoses was good for EH and moderate for CH. During the preceding month, acute medication was used by 90.9 % of the patients and prophylactic medication by 34 %. Ever-before use of five standard prophylactic drugs was recorded in 52.3 %. The proportion of patients with current pharmacoprophylaxis did not differ in EH and CH, whereas ever-before use was more common in CH (62.5 % was 45,3 %, p = 0.02). Patients with CH significantly more often consulted general practitioners and emergency departments, had a lower quality of life and more often signs of depression and anxiety. CONCLUSION: This study provides comprehensive data from eight Austrian headache centres for the first time. We found a substantial number of patients with CH including pMOH and its association with more common utilization of health care facilities and greater burden. The low use of prophylactic medication requires further examination.

The impact of headache in Europe: principal results of the Eurolight project.

BACKGROUND: European data, at least from Western Europe, are relatively good on migraine prevalence but less sound for tension-type headache (TTH) and medication-overuse headache (MOH). Evidence on impact of headache disorders is very limited. Eurolight was a data-gathering exercise primarily to inform health policy in the European Union (EU). This manuscript reports personal impact. METHODS: The study was cross-sectional with modified cluster sampling. Surveys were conducted by structured questionnaire, including diagnostic questions based on ICHD-II and various measures of impact, and are reported from Austria, France, Germany, Italy, Lithuania, Luxembourg, Netherlands, Spain and United Kingdom. Different methods of sampling were used in each. The full methodology is described elsewhere. RESULTS: Questionnaires were analysed from 8,271 participants (58% female, mean age 43.4 y). Participation-rates, where calculable, varied from 10.6% to 58.8%. Moderate interest-bias was detected. Unadjusted lifetime prevalence of any headache was 91.3%. Gender-adjusted 1-year prevalences were: any headache 78.6%; migraine 35.3%; TTH 38.2%, headache on ≥15 d/mo 7.2%; probable MOH 3.1%. Personal impact was high, and included ictal symptom burden, interictal burden, cumulative burden and impact on others (partners and children). There was a general gradient of probable MOH > migraine > TTH, and most measures indicated higher impact among females. Lost useful time was substantial: 17.7% of males and 28.0% of females with migraine lost >10% of days; 44.7% of males and 53.7% of females with probable MOH lost >20%. CONCLUSIONS: The common headache disorders have very high personal impact in the EU, with important implications for health policy.

Headache yesterday in Europe.

BACKGROUND: Surveys enquiring about burden of headache over a prior period of time (e.g., 3 months) are subject to recall bias. To eliminate this as far as possible, we focused on presence and impact of headache on the preceding day ("headache yesterday"). METHODS: Adults (18-65 years) were surveyed from the general populations of Germany, Italy, Lithuania, Luxembourg and the Netherlands, from a work-force population in Spain and from mostly non-headache patient populations of Austria, France and U.K. A study of non-responders in some countries allowed detection of potential participation bias where initial participation rates were low. RESULTS: Participation rates varied between 11% and 59% (mean 27%). Non-responder studies suggested that, because of participation bias, headache prevalence might be overestimated in initial responders by up to 2% (absolute). Across all countries, 1,422 of 8,271 participants (15-17%, depending on correction for participation bias) had headache yesterday lasting on average for 6 hours. It was bad or very bad in 56% of cases and caused absence from work or school in 6%. Among those who worked despite headache, 20% reported productivity reduced by >50%. Social activities were lost by 24%. Women (21%) were more likely than men (12%) to have headache yesterday, but impact was similar in the two genders. CONCLUSIONS: With recall biases avoided, our findings indicate that headache costs at least 0.7% of working capacity in Europe. This calculation takes into account that most of those who missed work could make up for this later, which, however, means that leisure and social activities are even more influenced by headache.

Diagnosis, prevalence estimation and burden measurement in population surveys of headache: presenting the HARDSHIP questionnaire.

The global burden of headache is very large, but knowledge of it is far from complete and needs still to be gathered. Published population-based studies have used variable methodology, which has influenced findings and made comparisons difficult. The Global Campaign against Headache is undertaking initiatives to improve and standardize methods in use for cross-sectional studies. One requirement is for a survey instrument with proven cross-cultural validity. This report describes the development of such an instrument. Two of the authors developed the initial version, which was used with adaptations in population-based studies in China, Ethiopia, India, Nepal, Pakistan, Russia, Saudi Arabia, Zambia and 10 countries in the European Union. The resultant evolution of this instrument was reviewed by an expert consensus group drawn from all world regions. The final output was the Headache-Attributed Restriction, Disability, Social Handicap and Impaired Participation (HARDSHIP) questionnaire, designed for application by trained lay interviewers. HARDSHIP is a modular instrument incorporating demographic enquiry, diagnostic questions based on ICHD-3 beta criteria, and enquiries into each of the following as components of headache-attributed burden: symptom burden; health-care utilization; disability and productive time losses; impact on education, career and earnings; perception of control; interictal burden; overall individual burden; effects on relationships and family dynamics; effects on others, including household partner and children; quality of life; wellbeing; obesity as a comorbidity. HARDSHIP already has demonstrated validity and acceptability in multiple languages and cultures. Modules may be included or not, and others (e.g., on additional comorbidities) added, according to the purpose of the study and resources (especially time) available.

Development and validation of the EUROLIGHT questionnaire to evaluate the burden of primary headache disorders in Europe.

We developed a 103-item self-reporting questionnaire to assess the burden of primary headache disorders on those affected by them, including headache characteristics, associated disability, co-morbidities, disease-management and quality of life. We validated the questionnaire in five languages with 426 participants (131 in UK, 60 in Italy, 107 in Spain, 83 in Germany/Austria, and 45 in France). After a linguistic and a face-content validation, we tested the questionnaire for comprehensibility, internal consistency and test-retest reliability at an interval of one month. In the different countries, response rates were between 73% and 100%. Test-retest reliability varied between -0.27 to 1.0 depending of the nature of the expected agreement. The internal consistency was between 0.69 and 0.91. The EUROLIGHT questionnaire is suitable for evaluating the burden of primary headache disorders, and can be used in English, German, French, Italian and Spanish.

Headache-associated dizziness in a headache population: prevalence and impact.

Headache is an underestimated burden on general health and social functioning. Accompanying symptoms of headache episodes might influence this impact. In a survey in a headache population in Luxembourg on the social and emotional impact of headaches, accompanying symptoms of headache episodes were evaluated. In 1909 participants with episodic (<15 days per month) headaches (77.1% women), visual symptoms (52.4%) and dizziness (51.1%) were frequent accompanying symptoms of headache episodes. Visual symptoms and dizziness were each independently associated with migraine in both genders and independently associated with greater headache-related disability (scored on the Migraine Disability Scale [MIDAS]), more severe depression, and higher disability as measured by the disease-independent World Health Organization Disability Assessment Schedule (WHODAS). We found that dizziness is a frequent accompanying symptom of headache, particularly in migraine. The presence of dizziness was found to have an exacerbating impact on disability and depression associated with headaches. The effect of dizziness was comparable in magnitude and independent from the presence of visual symptoms.

Prevalence of headache in Europe: a review for the Eurolight project.

The main aim of the present study was to do an update on studies on headache epidemiology as a preparation for the multinational European study on the prevalence and burden of headache and investigate the impact of different methodological issues on the results. The study was based on a previous study, and a systematic literature search was performed to identify the newest studies. More than 50% of adults indicate that they suffer from headache in general during the last year or less, but when asked specifically about tension-type headache, the prevalence was 60%. Migraine occurs in 15%, chronic headache in about 4% and possible medication overuse headache in 1-2%. Cluster headache has a lifetime prevalence of 0.2-0.3%. Most headaches are more prevalent in women, and somewhat less prevalent in children and youth. Some studies indicate that the headache prevalence is increasing during the last decades in Europe. As to methodological issues, lifetime prevalences are in general higher than 1-year prevalences, but the exact time frame of headache (1 year, 6 or 3 months, or no time frame stated) seems to be of less importance. Studies using personal interviews seem to give somewhat higher prevalences than those using questionnaires.

Development of a self-reporting questionnaire, BURMIG, to evaluate the burden of migraine.

We developed a 77-item self-reporting questionnaire to assess the burden of migraine (BURMIG), including headache characteristics, migraine associated disability, comorbidities, management, and the consequences on the patients' lives. We translated BURMIG into four languages (French, Portuguese, German and English) and tested it in 130 headache patients (20 pain clinic, 17 primary care and 93 general public) in Luxembourg. We performed a linguistic and a face-content validation and tested the questionnaire for its comprehensiveness, internal consistency and for its retest-reliability at an interval of 1 month (completion rates were 79.6 and 76.4%, for test and retest, respectively). Retest-reliability for the different parts of the questionnaire varied between 0.6 and 1.0 (Kappa coefficient), with an intracorrelation coefficient of 0.7-1.0. The internal consistency was between 0.74 and 0.91 (Cronbach's alpha). The questionnaire BURMIG is suitable to evaluate the burden of migraine and can be used in English, German, French and Portuguese.

Impact of headache in Europe: a review for the Eurolight project.

A recent health economic survey in Europe has suggested that migraine is the costliest among the neurological disorders. According to many studies, migraine and other disorders lead to widespread suffering, reduction of quality of life, and marked impairment of participation, both in work and social activities. The present literature survey was made in order to summarize what is known on the subject, as a preparation for a EU-supported study to assess the impact in several EU countries with similar methodology and the same research instrument. Previous studies have yielded relatively reliable data only for migraine, whereas the impact of tension-type headache is virtually unknown or only very incompletely known for most dimensions of headache impact. Some data do suggest, however, that this headache may be as important from a health economic and a public health perspective as migraine. In future studies it is important to get population-based data from various countries relevant for estimation of indirect (mostly absenteeism from work and reduced working efficiency when having headache) and direct costs (related to medication, consultations, investigations and hospitalisations). Also, the impact on ability to get education and participate in the workforce is very relevant, as is the impact on love life and family planning. The quality of life of headache patients should be measured by validated instruments. To get a complete picture, one should also ask about the effect on the life of partners and children, and on the possible impact even when headache-free (e.g. fear of the next attack).