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

Kinetic comparison of tissue non-specific and placental human alkaline phosphatases expressed in baculovirus infected cells: application to screening for Down's syndrome

BACKGROUND: In humans, there are four alkaline phosphatases, and each form exibits a characteristic pattern of tissue distribution. The availability of an easy method to reveal their activity has resulted in large amount of data reporting correlations between variations in activity and illnesses. For example, alkaline phosphatase from neutrophils of mothers pregnent with a trisomy 21 fetus (Down's syndrome) displays significant differences both in its biochemical and immunological properties, and in its affinity for some specific inhibitors. RESULTS: To analyse these differences, the biochemical characteristics of two isozymes (non specific and placental alkaline phosphatases) were expressed in baculovirus infected cells. Comparative analysis of the two proteins allowed us to estimate the kinetic constants of denaturation and sensitivity to two inhibitors (L-p-bromotetramisole and thiophosphate), allowing better discrimination between the two enzymes. These parameters were then used to estimate the ratio of the two isoenzymes in neutrophils of pregnant mothers with or without a trisomy 21 fetus. It appeared that the placental isozyme represented 13% of the total activity of neutrophils of non pregnant women. This proportion did not significantly increase with normal pregnancy. By contrast, in pregnancies with trisomy 21 fetus, the proportion reached 60–80% of activity. CONCLUSION: Over-expression of the placental isozyme compared with the tissue-nonspecific form in neutrophils of mother with a trisomy 21 fetus may explain why the characteristics of the alkaline phosphatase in these cells is different from normal. Application of this knowledge could improve the potential of using alkaline phosphatase measurements to screen for Down's syndrome

Le musée, un lieu éducatif

This anthology contains essays on various aspects of museum education, by 35 members of the Special Interest Group on Education and Museums (SIGEM). Originally presented at a conference held in Montreal in 1995, the essays in this book address a wide range of issues related to the educational function of museums. Topics discussed include: educational, scientific and museological research; the value of guided tours and visual arts workshops; the question of evaluation; and relationships between museums and schools. 21 diagrams and 19 charts. 4 texts in English 31 texts in French. Circa 480 bibl. ref

Development and validation of tools for the asssessment of the burden and disease-management of headache disorders in Europe

Headache, including migraine, is a common and disabling neurobiological disorder which is under-recognized, under-treated, commonly mismanaged and it imposes a substantial health burden. The principle aim of my dissertation was to develop and validate scientific instruments to improve the methodology and the scientific value of future headache impact studies on which headache disease-management recommendations at EU level will be based upon. My dissertation’s working objectives were: * To review the literature published between 1988 and 2007 for studies reporting the prevalence and impact of headache disorders and new relevant review papers at EU level from 2005-2007 * To develop and validate a first scientific instrument in a questionnaire format for gathering headache impact information from a representative multi-cultural population sample of migraine sufferers in Luxembourg * To develop and validate a second instrument in a questionnaire format for gathering headache prevalence and impact information in a standardized way from headache sufferers in Europe. In my first study I made a literature survey in order to summarize what is known on the subject, as a support for my future studies to assess the prevalence and impact of primary headache disorders in Europe with similar methodology and the same research instrument. The analysis revealed that according to a recent health economic survey in Europe migraine is the most costly among the neurological disorders. Several studies suggest that migraine and other disorders lead to widespread suffering, reduction of quality of life, and marked impairment of participation, both in work and social activities. Most 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. These findings allowed me to analyze the gaps and to the collection of 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). The impact on ability to get education and participate in the workforce should be taken into consideration as well as the impact on love life and family planning. 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). The quality of life of headache patients should be measured by validated instruments. In my second study we developed and validated a 77-item-self reporting questionnaire to run a pilot study 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 4 languages (French, Portuguese, German and English) and tested it in 130 headache patients (20 from pain clinics, 17 from primary care doctors and 93 from the 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 test-retest-reliability at an interval of one 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 to 1.0 (Kappa coefficient), with an intracorrelation coefficient of 0.7–1.0. The internal consistency was between 0.74 to 0.91 (Cronbach’s alpha). These findings allowed me to propose the BURMIG questionnaire to evaluate the burden of migraine in the multicultural population of Luxemburg in four languages English, German, French and Portuguese. Based on the results of my pilot study in Luxemburg with BURMIG questionnaire, we developed in my third study a 103-item-self reporting questionnaire (EUROLIGHT) to assess the burden of primary headache disorders on those affected by them including headache characteristics, associated disability, comorbidities, disease-management and quality of life. We validated the questionnaire in 5 languages with 426 headache patients (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%. Completion rates over 90% were 69% and 82%. 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. These findings allowed me to propose the EUROLIGHT questionnaire to evaluate the burden of primary headache disorders at European level. It can be used in English, German, French, Italian and Spanish. Further language validations have already been done for Portuguese, Dutch and Lithuanian. The studies show that primary headache disorders are disabling neurobiological disorders but under-recognized, under-treated and commonly mismanaged. With the support of major stakeholders we developed a first and then a second scientific instrument in a questionnaire format and we validated both instruments to gather qualitative as well as quantitative data that describe the clinical, economic and humanistic dimensions of primary headache disorders to produce systematic data to complement epidemiological evidence of the burden and disease management of primary headache disorders in Europe

A Survey on Probable and Improbable Decisions About Headache Treatment

The treatment of headache disorders is adapted to their severity. It is the aim of this study to evaluate the probability of treatment decisions being taken and to identify underlying principles influencing them. The study was internet-based and cross-sectional; participants completed the EUROLIGHT questionnaire anonymously. Inclusion criterion was the consent to participate. Participants were excluded if diagnostic questions had not been completed. We estimated probabilities based on relative frequencies and built binary logistic regression models to identify factors influencing decision-making. The survey was completed by 976 individuals; 636 completed the diagnostic questions. The probability of a patient to consult a GP or a neurologist was 0.26 and 0.20, respectively. Patients decided by a probability of 0.93 to take acute treatment. These treatment decisions, which were taken by patients alone increased in probability with increasing ictal burden (P < 0.001, P < 0.001 and P < 0.001). The probability of treating migraine with triptans was 0.74; the probability to take a prophylactic treatment was 0.43. Neurologists were more likely than GPs to prescribe these medications (P = 0.006 and P < 0.001, respectively). We identified several principles underlying treatment decisions. Most patients decide to take acute treatment for headache attacks; they are less likely to treat their headache disorder interictally. Treatment decisions are less likely to be taken if more than one decision-maker is involved; if physicians are involved, severity of the headache disorder does not affect the probability of a treatment decision being taken. Overall, the more severely affected a headache patient, the less likely an adequate treatment

Cluster headache and anxiety: Results of the EUROLIGHT cluster headache project – An Internet-based, cross-sectional study of people with cluster headache

Objective: The aim of this study is to evaluate how anxiety influences the burden of disease of cluster headache. Methods: Participants completed a modified version of the EUROLIGHT questionnaire. Anxiety was measured with the anxiety subscale of the Hospital Anxiety and Depression scale. An elevated level of anxiety was assumed when eight or more points were scored. Results: The data of 1089 participants were taken for analysis. The score of the anxiety subscale of the Hospital Anxiety and Depression Scale (HADS-A) correlated weakly with the number of attacks in the last 30 days (r = 0.17). A score of eight and above in the HADS-A was associated with hurting oneself during an attack (odds ratio (OR) = 2.63), worrying about future attacks (OR = 2.95) and reporting of both failed relationships (OR = 2.81) and career problems (OR = 2.65). The odds of feeling understood by family and friends as well as colleagues and employers were lower in anxious persons (OR = 0.35 and 0.40, respectively). Conclusions: Anxiety complicates dealing with cluster headache and strongly aggravates its burden. Instead of finding help in others, anxious persons feel misunderstood and withdraw; relationships fail and difficulties at work arise. Keywords Cluster headache, anxiety, worry, co-morbidit

The impact of depressive symptoms on the burden of cluster headache: Results of the EUROLIGHT Cluster Headache Project, an Internet-based, cross-sectional study of people with cluster headache

Many patients affected by cluster headache (CH) have a co-morbid depression. The aim of this study is to evaluate how the burden of disease is influenced by depressive symptoms measured by a depression score. The study was cross-sectional and Internet-based. We included individuals with a self-reported diagnosis of CH and asked them to fill out the EUROLIGHT questionnaire, which includes a depression score. The number of headache days was higher among patients with higher depression scores. In these participants, worrying about future attacks, avoiding triggers, believing to have earned less and avoiding to talk about the disease were more common as well. Individuals with higher depression scores reported a significantly higher burden of disease. It is possible that fear of pain, self-concealment and fear of impoverishment are consequences of the depression attributed to the headache disorder

The impact of the disease burden on the quality of life of cluster headache patients

Background: Cluster headache cannot be cured, and not all attacks can be aborted or prevented. Nevertheless, therapeutic guidelines focus solely on the attacks and ignore reverberations of the disorder on patients’ lives. However, it is likely that not only pain reduces patients’ quality of life (QoL). Objective: To investigate whether the interictal burden independently influence the QoL of subjects suffering from cluster headache. Methods: In this cross-sectional study, we asked patients with a self-reported cluster headache diagnosis to answer a modified EUROLIGHT questionnaire that included the EURO-HIS QoL scale. We built a generalised linear model and included the QoL as the dependent variable. Independent variables comprised both the ictal and the interictal burden. Results: The data of 625 participants entered the analysis. Several aspects of the interictal burden independently reduced the QoL. Among them were fear of pain, self-concealment, and private life difficulties due to the disorder. Conclusion: Both the ictal and the interictal burden of cluster headache independently reduce patients’ QoL. We advocate adopting a more holistic approach to cluster headache management extending the focus towards the afflicted person and their QoL, which would generate novel therapeutic goals and strategies, complementary to treating and preventing cluster headache attacks

The EUROLIGHT cluster headache project: Description of methods and the study population – An Internet-based cross-sectional study of people with cluster headache

Objective: To present the methodology and to describe the sample of a large, Internet-based survey on the burden of cluster headache (CH). Methods: Participants filled out a questionnaire online. Inclusion criteria were a reported diagnosis of CH and a residency in a European country; exclusion criteria were refusal to give informed consent and to complete the questionnaire. Results: A total of 1514 participants completed the questionnaire. Of these, 66.2% were male and 31.2% reported suffering from chronic CH. The diagnosis was validated based upon the responses in 92.9% of the participants. Other diagnoses seemed more likely in 0.8%. Among the participants with self-reported chronic CH, the International Classification of Headache Disorders-3 beta criteria for chronicity were fulfilled by 90.8%. Conclusions: In this article, we discuss the applied methodology as well as the properties of the sample. The overall accuracy of the self-reported diagnoses was very good as judged by our questionnaire; women and chronic CH were slightly over-represented. We will present the results of more thorough analyses in future articles and believe that these data will provide deeper insights into the burden of CH and will help to give a voice to those who endure this painful disease