Narrative Medicine to integrate patients’, caregivers’ and clinicians’ migraine experiences: the DRONE multicentre project

Background Although migraine is widespread and disabling, stigmatisation and poor awareness of the condition still represent barriers to effective care; furthermore, research on migraine individual and social impact must be enhanced to unveil neglected issues, such as caregiving burden. The project investigated the migraine illness experience through Narrative Medicine (NM) to understand daily life, needs and personal resources of migraneurs, their caregivers and clinicians, and to provide insights for clinical practice. Methods The project involved 13 Italian headache centres and targeted migraneurs, their caregivers and migraine specialists at these centres. Written narratives, composed by a sociodemographic survey and illness plot or parallel chart, were collected through the project’s webpage. Illness plots and parallel charts employed open words to encourage participants’ expression. Narratives were analysed through Nvivo software, interpretive coding and NM classifications. Results One hundred and seven narratives were collected from patients and 26 from caregivers, as well as 45 parallel charts from clinicians. The analysis revealed migraine perception in social, domestic and work life within the care pathway evolution and a bond between chaos narratives and day loss due to migraine; furthermore, narratives suggested the extent of the caregiving burden and a risk of underestimation of migraine burden in patients’ and caregivers’ life. Conclusion The project represents the first investigation on migraine illness experience through NM simultaneously considering migraneurs’, caregivers’ and clinicians’ perspectives. Comparing narratives and parallel charts allowed to obtain suggestions for clinical practice, while NM emerged as able to foster the pursuing of migraine knowledge and awareness.

027 Will refractory patients respond to erenumab in the real world?

IntroductionErenumab has been studied in Randomised Controlled Trials (RCT), with stricter exclusion criteria than real world populations.Methods65 patients from two Australian headache centres on Erenumab had primary outcomes of ≥ 50% response in monthly migraine days (MMD) and monthly headache days (MHD), compared to their demographics, frequency, duration of Chronic Migraine (CM), failed prophylactic medications, severity scores and medication overuse headache (MOH).Results35% (23/65) had daily headaches, with ≥ 50% MHD and MMD reduction in this subgroup of 17% (4/23) and 65% (13/20), respectively. Duration of CM was >10 years in 48% (29/61), with ≥ 50% MHD and MMD reduction in 28% (8/29) and 48% (13/27), respectively. 100% (64/64) had failed > 3 prophylactic medications with ≥50% MHD and MMD reduction in 30% (19/64) and 47% (27/58), respectively, with reducing rates of ≥ 50%MMD reduction if >5 (29%; 17/58) and >10 (22%;2/9). 95% had high severity scores (HIT-6 score >60), with a ≥ 50% MMD reduction in 43% (23/54). MOH occurred in 41% (24/58) for triptan and 29% (17/58) for codeine medications, with a ≥ 50% MMD reduction in 71% (17/24) and 41% (7/17), respectively (all groups p>0.05).ConclusionThis real world cohort treated with Erenumab included patients that would be excluded from RCT analysis- including more chronic, frequent, severe and refractory migraine. Despite this, there were still ≥50% responders in more severe subgroups, particularly daily headache, high severity scores and triptan MOH. Measuring MMD may be more sensitive for assessing improvement than MHD.

Prevalence of headache attributed to aeroplane travel in headache outpatient populations: An Italian multicentric survey

Background To assess the prevalence of headache attributed to aeroplane travel (AH) in patients referred to Italian Headache Centres. Material and method 869 consecutive patients visiting six Italian headache centres during a 6 month-period (October 2013 to March 2014) were enrolled in the survey. Among them, 136 (15.6%) had never flown and therefore were excluded from the study. The remaining 733 patients (f = 586, m = 147; age 39.1 ± 17.3) were asked about the occurrence of headache attacks during flight; those who answered the question positively filled in a detailed questionnaire that allowed the features of the attacks to be defined. Results Headache attacks during the flight was reported by 34/733 subjects; four presented attacks fulfilling ICHD-3 beta (1) criteria for migraine without aura and therefore were not further considered. The features of the remaining 30 (4.0%; m = 18, f = 12, age 36.4 ± 7.3) completely fulfilled the ICHD-3 beta criteria for AH. In more detail, the pain was unilateral (fronto-orbital: n = 23; fronto-parietal: n = 7; without side-shift: n = 25, with side-shift: n = 5), lasting up to 30 min in 29 subjects. All the patients reported the pain as very severe or unbearable and landing as the phase of travel in which the attack appeared. In four cases, a postictal, milder, dull headache could last up to 24 hours. Accompanying symptoms were present in eight cases (restlessness: n = 5; conjunctival injection and tearing: n = 2; restlessness + ipsilateral conjunctival injection and tearing: n = 1). The fear of experiencing further attacks negatively affected the propensity for future flights in 90.0% of subjects (n = 27). In all the patients, AH onset did not coincide with the first flight experience. Concomitant migraine without aura was diagnosed in 24, tension-type headache in four, migraine without aura + tension-type headache in two cases; none suffered from cluster headache. Five subjects reported AH on each flight, 20 in > 50% of flights, five occasionally. Despite the severe intensity of the pain, only one third of this sample spontaneously reverted to a pharmacological treatment; the most useful strategy combines a decongestant nasal spray plus the intake of a simple analgesic 30 min before the estimated attack. Spontaneous manoeuvres were applied by 18 patients (Valsalva-like: n = 12; compression: n = 2; both manoeuvres: n = 4), more often without significant improvement. These data confirm our previous finding on the clinical features of AH. Conclusion AH was found in 4.0% of a multicentre, large sample of patients with flight experiences. Although limited to a sample of patients followed in six Italian headache centres, to the best of our knowledge these are the first epidemiological data on AH gathered by direct interview. If properly investigated, AH seems to be a not infrequent condition, which, when diagnosed, could probably be prevented in many cases.

Treatment of migraine attacks and prevention of migraine: Guidelines by the German Migraine and Headache Society and the German Society of Neurology

In collaboration with some of the leading headache centres in Germany, Switzerland and Austria, we have established new guidelines for the treatment of migraine attacks and the prevention of migraine. A thorough literature research of the last 10 years has been the basis of the current recommendations. At the beginning, we present therapeutic novelties, followed by a summary of all recommendations. After an introduction, we cover topics like drug therapy and practical experience, non-effective medication, migraine prevention, interventional methods, non-medicational and psychological methods for prevention and therapies without proof of efficacy.

Rare primary headaches in Italian tertiary Headache Centres: Three year nationwide retrospective data from the RegistRare Network

Background Rare primary headaches are mainly included in Chapters 3, Trigeminal autonomic cephalalgias, and 4, Other primary headache disorders, Part One of the International Classification of Headache Disorders 3rd edition. Epidemiological data are scarce, mostly emerging from case series or small studies, with the exception of cluster headache. In order to overcome the knowledge gap about rare primary headaches, the RegistRare Network was launched in 2017 to promote research in the field. Methods A retrospective cohort study including patients who, from April 30, 2014 to May 1, 2017, visited seven Italian tertiary Headache Centres, was undertaken to estimate in that clinical setting prevalence and incidence of headaches included in Chapters 3 and 4, Part One of the International Classification of Headache Disorders 3rd edition. Prevalent headache is defined as a headache recorded within the study timeframe, regardless of when the diagnosis was made. Incident headache is defined as a headache diagnosed for the first time in the patient during the study period. Results Twenty thousand and eighty-three patients visited the participating centres, and 822 (4.1%) prevalent cases, of which 461 (2.3%) were incident cases, were registered. Headaches listed in Chapter 3 affected 668 patients, representing 81.3% of the total number of prevalent cases. Headaches listed in Chapter 4 affected 154 patients and represent 18.7% of the total number of prevalent cases. Cluster headaches represent the most frequently diagnosed rare headaches (70.4%). For 13 entities out of 20, no cases were registered in more than 50% (n ≥ 4) of the centres, and for 14 entities more than 50% of diagnoses were incident. Conclusions This large, multicentre study gives the first wide-ranging snapshot of the burden in clinical practice of rare headaches and confirms that cooperative networks are necessary to study rare headaches, as their prevalence is often very low. The launch of a disease registry by the RegistRare Network will favour research in this neglected population of headache patients. Trial registration NCT03416114.

Management of Migraine and the Accessibility of Specialist Care – Findings from a Multi-national Assessment of 28 Healthcare Networks

Introduction:Migraine is one of the leading reasons for patient access to neurology services. Waiting lists can limit patients’ ability to access specialist care, even at specialised headache centres. Our study aims to investigate this issue, identify possible root causes and also document existing good practices.Methods:We conducted a study in a sample of 28 headache centres and their networks in six countries by performing in-depth interviews with 166 healthcare professionals.Results:The waiting list for new patients and follow-up visits exceeded 3 months in 61% and 36% of centres, respectively. Patients waited on average 6 months for their first consultation, with peaks beyond 12 months. Five areas were identified as common rootcauses:(1) inappropriate referral of patients with low-frequency episodic migraine or patients under acute treatment, (2) lack of triage/priority allocation, (3) limited resource availability or resources dedicated to migraine, (4) limited delegation of activities, and (5) suboptimal management of follow-up visits.Conclusion:Our work highlights a gap between best practices for migraine management proposed in the literature and current real-world practice. Guidelines recommend a “network” approach to bridge different levels of care. Based on our findings, consistency in practice amongst specialised headache clinics and integration with primary care represent an important area for further improvement.