FormalPara Key Summary Points

The authors suspected that the burden of migraine and its impact on patients in Gulf region countries is underestimated and that migraine is undertreated.

Relevant literature suggests that the prevalence of migraine in the Gulf region countries may be higher than previously thought.

Patient stories suggest that despite being a neurological disease migraine is not considered to be a disease, diagnosis is often delayed and/or incorrect, and that achieving of symptom control is variable.

Increased awareness and understanding of migraine are needed for it to be taken more seriously by society and reduce stigma.

Education for patients affected by migraine and their families is recommended to improve understanding of the disease and patient quality of life.

Physician education and initiatives to address perceived gaps in the care pathway are recommended to increase recognition of migraine as a disabling disease and facilitate its timely and appropriate diagnosis and treatment.

Introduction

Migraine is one of the most common diseases globally and is associated with major disability and significant socioeconomic cost [1, 2]. Despite its substantial disease burden, there is evidence that migraine is underdiagnosed and undertreated and that the impact of migraine on the daily lives of patients is underappreciated [1,2,3].

The Emirates Neurology Society organised a meeting with the neurologists and headache specialists and some of their selected patients affected by migraine (Dubai, November 2022) to discuss the scale and impact of migraine on patients in the Kingdom of Saudi Arabia (KSA), Kuwait, and the United Arab Emirates (UAE) and the notion that migraine is underestimated and misunderstood by healthcare professionals and the general public which creates gaps in the management of migraine. In particular, patients can face barriers to successful outcomes, including access to an appropriate provider, receiving a prompt and accurate diagnosis, and delivery of minimally appropriate acute and preventive pharmacological treatment [4, 5].

We report qualitative findings from a socio-demographically diverse patient advisory board via a semi-structured doctor–patient discussions.

The meeting involved five neurologists and headache specialists from the Gulf Cooperation Council (GCC) region, each of whom invited two adult patients (age > 25 years) according to selection criteria that facilitated a diverse representation of patients with high versus low frequency migraine, newly versus long-term diagnosed migraine, preventative versus acute treatment, treatment failure versus well-managed migraine, and busy versus quiet lifestyle. The adult age of the patients on the advisory board is relevant in the context of the age distribution of migraine incidence gradually shifting from teenagers to middle-aged adults according to an age-period-cohort analysis of Global Burden of Disease (GBD) study data [6], and an earlier analysis of the GBD study data showing that the prevalence of migraine peaks in young and middle adulthood [7]. Although patients were not randomly selected for participation in the advisory board, all were young adults and in their peak productive years. This demographic representation aligns with epidemiological studies conducted in the GCC region showing that migraine has its highest prevalence among younger adults [8, 9].

The experiences and views of the ten patients were shared via a semi-structured doctor–patient question and answer forum. The discussions centred around four main topics: disease burden, diagnosis, treatment, and feedback for physicians and the broader healthcare system (Table 1). The interview topics were pre-specified and based on the firsthand experiences of the participating physicians. The doctor–patient discussions were recorded and transcribed and analysed for recurring themes related to patient migraine burden, access to treatment, and feedback for physicians. All participants, including the patients, gave consent to participate and for their conversations to be recorded. All were aware and agreed to the objectives of the advisory board and the publication of the results and discussions. Ethics committee approval was not required by local regulations for patient advisory boards.

Table 1 Main topics for doctor–patient discussions and underlying discussion question themes
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The specific objectives of the meeting were to learn more about the impact of migraine in GCC countries via patient stories and with this greater understanding to formulate recommendations to improve the diagnosis and treatment journey for patients.

Although this advisory board captured important patient-centred perspectives and feedback from a diverse group of patients affected by migraine, the sample size was small and not all of the findings will be generalizable to other populations. In addition, recall bias and the patients possibly tempering some of their feedback in the presence of their doctors are limitations of the doctor–patient forum.

Published literature cited in this article, to provide context to the experiences of patients on the advisory board, was sourced via searching PubMed from 1990 to 2023 using combinations of the following keywords: migraine, epidemiology, prevalence, burden, diagnosis, treatment, adherence or compliance, stigma, attitudes, quality of life, socioeconomics, gulf region, Kingdom of Saudi Arabia, Kuwait, United Arab Emirates.

Ethics committee approval was not required by local regulations for patient advisory boards.

All participants were aware and agreed to the objectives of the meeting and the publication of the results and discussions.

Disease Burden

Prevalence

With the meeting not generating quantitative data, the published literature was consulted to assess the local prevalence of migraine. Although earlier epidemiological studies in GCC countries found that the prevalence of migraine (2.5–10%) [10] was within that estimated worldwide (< 14%) [7], some more recent studies have found higher migraine prevalence estimates of around 25% [8, 9, 11]. Hence, migraine may be more prevalent in the GCC countries than generally believed.

Prevalence of migraine studies from GCC countries also confirm global trends of female individuals being disproportionately affected by migraine, a high prevalence of migraine during the most economically productive years of life, and episodic migraine being more commonly diagnosed than chronic migraine [8, 9, 11, 12].

Quality of Life

The patient stories confirmed that the debilitating effects of migraine lead to lost days of study and work, having to miss social events, strained partner relationships, and not being able to provide childcare. “My partner always tells me: ‘you don’t love me when you have migraine; you become a totally different person’” was a particularly poignant patient testimony on the negative impact of migraine on their personal life. According to another patient on the advisory board: “migraine affected my study, my life, and my social life—I refused to attend any social event”. In a burden of migraine study conducted in Kuwait, episodic and chronic migraine were respectively responsible for patients with migraines losing 1.87 and 6.62 days from paid work, 1.44 and 5.35 housework days, and 2.81 and 3.85 social and family days in the prior 3 months [9].

Two of the ten patients on the advisory panel reported being affected by migraine on at least 20 days per month, which is similar to one in three patients with migraines reporting at least 13 migraine episodes per month in a survey conducted in the KSA [13]. By way of context, a mean of seven migraine attacks per month was reported in the study of migraine burden in Kuwait [9].

Patients also described receiving little sympathy from friends, work colleagues, and family members, which suggests that the incapacitating effects of migraine are not fully appreciated by non-patients and that migraine is not seen as being a disease despite being a neurological disease. Patients also reported not being believed that they were having a migraine or that they were exaggerating their symptoms. In a study that assessed migraine-related disability in the KSA, more than two-thirds of patients with migraines reported feeling that their work colleagues or supervisor either did not understand or had minimal understanding of their headache issues [12].

These experiences reflect that stigma is a feature of living with migraine [11, 14, 15]. Stigma, which affects social attitudes toward migraine, is associated with migraine disability and emotion-related quality of life [15]. Three of the 10 patients reported having co-existing depression during the doctor–patient discussions. In two studies that evaluated migraine-associated comorbidities in the KSA, depression was reported by 20% and 26% of patients affected by migraine, respectively [11, 13].

Socioeconomics

Migraine-related absenteeism and disability result in lost productivity and make finding and keeping a job difficult [1, 16]. During the doctor–patient discussions, one patient described quitting a job as a result of concerns about their mental health and also losing income because of the debilitating effects of migraine. The ever-present possibility of a migraine attack increased job-related stress, which in turn amplified the severity of their migraines. For another patient, sensitivity to noise and light during migraine episodes was a major problem in their noisy and brightly lit work environment, requiring them to take time off work with each episode.

Migraine can also result in patients incurring out-of-pocket costs [17, 18]. Two patients on the advisory board described having to pay for treatment as a result of insurance limits. In one of these cases, the patient’s insurance company did not consider migraine to be a disease. Patients also experience difficulties accessing novel class-specific medication due to public hospitals in the GCC region generally not including these medications in their formulary. A plausible reason is that decision-makers lack awareness of the severely disabling effects of migraine and hence the need for effective therapies.

Barriers to Diagnosis

Barriers to successful outcomes for patients affected by migraine include delayed diagnosis and failure to provide a correct diagnosis [19, 20].

Delayed Diagnosis

Patients described their diagnostic journeys, which were invariably prolonged and frustrating. Diagnosis delay was 6–15 years across the participating patients, which is similar to the 7.75 (1–38) years previously reported in Kuwaiti patients with migraines [19]. These observations are consistent with a European Migraine and Headache Alliance access-to-care survey in which one-third of patients reported seeing at least four specialists before being correctly diagnosed and the time between diagnosis and treatment exceeded 5 years in 40% of cases [21].

According to one patient on the advisory board, patients affected by migraine are unlikely to seek treatment via the public system because it takes too long to get an appointment. Patients on the advisory board also believed that there are too few physicians who specialise in treating migraine and that emergency departments should have a migraine specialist so that severe migraine attacks are better treated.

Patients affected by migraine experiencing delays in being able to see a doctor suggests the need for more physicians with knowledge of headache disorders in the GCC region. Indeed, the region lacks certified headache medicine specialists and headache clinics to receive referrals to diagnose and manage distinct types of headaches. In public hospitals, patients affected by migraine can wait 6–12 months to be seen by a neurologist. They can be seen more quickly in private clinics and hospitals. However, as a result of the self-referral system used in most private hospitals, patients decide which specialty they need to visit and, presumably because of poor awareness of migraine features [22], many patients access other specialties (including ear nose and throat, ophthalmology, vascular surgery, neurosurgery, gastroenterology, physiotherapy, and alternative medicine) before finally seeing a neurologist or headache specialist.

At the same time, reports of medically unrecognised migraine suggest the need for medical education to augment disease awareness among physicians and improve their understanding of when to refer patients. In response to being asked what factors delayed their diagnosis one advisory board patient replied: “I think the most important cause was the unfamiliarity of migraine symptoms to the doctors”. Gaps in formal headache education and training within neurology residency programmes have been identified in the KSA [23].

Misdiagnosis

Migraine in primary care is often incorrectly diagnosed as sinus headache or sinusitis and managed as such, with the similarity of sinusitis and migraine symptoms complicating the diagnostic process [19]. Indeed, two of the participating patients reported their migraine being misdiagnosed as sinusitis, one of whom underwent surgery as a result. In both of these cases, their migraine was initially misdiagnosed in primary care and, in one case, subsequently also misdiagnosed by two specialists. According to one patient: “It took a lot of time until I was diagnosed with migraine, and I took a lot of medications. First, they diagnosed me with sinusitis but after I had an aggressive attack of headache that lasted 2 days my sister who is a family medicine doctor told me that it must be migraine. I subsequently visited a neurologist and he confirmed that it was migraine”.

Another patient reported that their migraine was misdiagnosed as oesophageal reflux due to the migraine-associated nausea. In all cases, the misdiagnoses contributed to a delay in migraine diagnosis and hence receipt of appropriate migraine treatment.

Poor migraine awareness among patients and physicians and gaps in critical knowledge among physicians and medical students have been found to be an issue in some countries, which could be a contributing factor to migraine being misdiagnosed [24,25,26,27]. A recent survey conducted across KSA found that less than half of senior medical students, medical interns, general practitioners, and family physicians had good awareness and knowledge of headache [28]. Multiple consultations with primary and secondary care physicians left one patient with the impression that many healthcare professionals consider migraine to be ‘just another headache’ and so do not take it seriously.

All patients talked about the importance of seeing a doctor that specialises in migraine for their condition to be correctly diagnosed as migraine. One patient, after finally finding a migraine specialist who has successfully treated their condition, described it as a completely unique experience with respect to the questions the specialist asked, the tests done, and the treatments offered compared with their previous encounters with healthcare professionals.

A lack of familiarity with migraine diagnostic criteria among physicians and a reluctance to use validated diagnostic tools may partially account for the underdiagnosis of migraine in GCC countries.

Unmet Needs in Treatment

Control of Migraines

Six patients confirmed that they tried all (or almost all) available over-the-counter (OTC) analgesics, even prescription analgesics in one case, prior to formal diagnosis of their migraine. These patient accounts are consistent with the literature indicating that individuals with primary headache manage their headache by self-medicating, mainly with conventional OTC medications [12, 29]. There is evidence that prophylactic medication is underused in the management of headache [29,30,31]. The MAST survey of a large sample of US patients with migraines found that many used OTC medications to the exclusion of prescription drugs and that both acute and prophylactic medications were underused [29].

In the doctor–patient discussions there was consensus among patients that achieving successful migraine management depended on being able to access a migraine clinic or migraine headache specialist. Gaining control of migraines typically involved trying different treatments, requiring specialist knowledge. There was also a feeling that, without a patient possessing at least some self-knowledge of migraine and having the perseverance to find the ‘right’ specialist, receiving successful treatment was largely a matter of good luck.

Adherence to Treatment

Similar to other chronic conditions, adherence to therapy is generally poor among patients affected by migraine [32]. However, adherence to pharmacological prophylaxis can be improved with once-daily dosing [33]. Some of the doctor–patient discussions suggested a migraine preventive therapy with a once-daily oral pill option was preferred to subcutaneous or intravenous administration on a quarterly or monthly basis.

Patient Education and Support

Therapeutic education (e.g., migraine triggers, treatment expectations, correct use of medication) for patients affected by migraine is important to facilitate treatment adherence and for the successful management of migraine [34, 35]. One patient described how despite their migraine being promptly diagnosed, it took time to learn how to manage their migraine episodes. This and similar comments from other participating patients suggest that education would help patients affected by migraine to:

  • Understand the pathology of their condition and recognise symptoms and triggers.

  • Appreciate the importance of maintaining a daily routine, avoiding dietary triggers, and staying hydrated.

  • Appreciate the limitations of migraine medications.

  • Know what medication to take and when.

  • Know when to see a specialist (e.g., as a result of increased symptom frequency or severity).

The participating patients were unanimous that they would prefer to receive their information about migraine primarily from a specialist. Patients also expressed the need for education targeting family members and friends so that they are able to fully comprehend the burden of migraine symptoms.

Two participating patients advocated advising family, friends, work colleagues with migraine to be persistent in finding the ‘right’ specialist to avoid being trapped in a cycle of misdiagnosis and unsuccessful treatments. This feedback suggests that support networks for patients affected by migraine would be beneficial, especially for less knowledgeable and/or assertive individuals.

Patient Feedback to Physicians

Patient advice to physicians was that physicians should spend more time with their patients affected by migraine to better understand how their patient’s symptoms adversely affect daily function and that migraine is more serious than ‘just a headache’. Patients also felt that physicians should devote time to educating patients and their immediate family members to foster a collective understanding of migraine and its debilitating symptoms.

Proposed Initiatives

Epidemiological data indicate that the scale of migraine as a health concern in GCC countries is greater than originally thought, which emphasises the need to raise awareness of the condition and examine the patient experience.

Education designed for the family members and friends of patients with migraine is needed to enhance their awareness and understanding of the incapacitating effects of migraine symptoms.

Suggested initiatives to help address gaps in migraine awareness and knowledge among healthcare professionals are dedicated headache medicine rotations for neurology residents and for residents specialising in family and internal medicine to spend time in neurology and headache clinics during their neurology rotation. We also support medical students and interns attending neurology and headache outpatient clinics during their neurology block to gain experience in assessing headache cases that they would not normally see during their neurology rotations.

Initiatives aimed at various levels of care to mitigate delayed diagnosis, misdiagnosis and poor treatment outcomes experienced by patients are summarised in Fig. 1.

Fig. 1
figure 1

Summary of proposed initiatives to reduce the barriers to care that patients affected by migraine can encounter. CME continuing medical education, ED emergency department, MDT multidisciplinary team

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Conclusion

The burden of migraine and its impact on patients in GCC countries appears to be underestimated and its diagnosis and treatment suboptimal.

Increased societal awareness and understanding of migraine are needed to reduce stigma and improve quality of life for patients affected by migraine. Reducing delayed and incorrect diagnoses and increasing successful treatment outcomes will require more physicians to recognise migraine as a debilitating neurological disease and improve their knowledge of its management and for perceived gaps in the care pathway for migraine to be addressed.