Perception of the general population towards migraine in Jeddah, Saudi Arabia

Migraine is a chronic episodic neurological disorder characterized by a myriad of neurological symptoms including multi-phase attacks of headache, photophobia, phonophobia, and dizziness [1]. According to the World Health Organization statistics, migraine is the third most prevalent condition and the second most disabling disorder worldwide [2]. It is one of the major public health concerns with more than one billion individuals affected worldwide. Approximately, 1 in 16 men and 1 in 5 women suffer from migraine, and this disorder causes more burden in females [3]. Migraine is considered a disorder of the trigeminovascular system, and progress in the fundamental understanding of pathophysiology has led to novel and specific therapeutic interventions [4].

Over the past decade, several studies were conducted to evaluate the prevalence of migraine in the Gulf region and Arab countries. In a study done by Al Jumah and colleagues [5], the estimated 1-year prevalence of migraine in Saudi Arabia was 25%. In a cross-sectional community-based study conducted in Kuwait by Al-Hashel and colleagues [6], the 1-year prevalence of migraine was 23%. In a study conducted by El-Sherbiny and colleagues in Egypt, the 1-year prevalence of migraine in Fayoum Governorate was 17.3% [7].

There are many conflicting beliefs, and public awareness about migraine varies widely among different countries. Public awareness studies are important to identify misunderstandings and misconceptions and will help in the successful designing of targeted campaigns to improve the overall knowledge of the community. It is imperative to raise public awareness about migraine, which will assist the patients and their families in seeking medical advice at the earliest and in receiving medical therapy as soon as possible [8, 9]. To the best of our knowledge, there are no studies conducted about the public perception and attitudes towards migraine in Saudi Arabia. This study aims to determine the public perception and attitudes towards migraine in Jeddah, Saudi Arabia.

This cross-sectional study was conducted during the period between September 2019 and January 2020 in various public places including malls in Jeddah, Saudi Arabia. A non-probability convenience sample technique was used in the selection of respondents, in which those who were invited and voluntarily agreed to participate were included in the study. The inclusion criteria were age ≥ 18 years and residents of Jeddah city. Non-residents and individuals who were diagnosed with migraine were excluded from the study. Based on the Raosoft sample size calculator, of the 3.5 million estimated population size, a sample size of 385 was obtained (95% confidence interval, 5% margin of error, and 50% response distribution).

The 40-item self-administered survey questionnaire used in this study was developed based on literature review and expert opinions (expert neurologists). The development of the survey questionnaire consisted of two phases. The questionnaire items were designed in both Arabic and English language utilizing the back-translation method by two native speakers to make sure that the meaning of each item in the questionnaire was retained. The main language used was Arabic, which is the official language for all participants. A pilot survey was conducted with 20 participants to examine the reliability of the questionnaire. Cronbach alpha reliability coefficients calculated were 0.75–0.82 for each scale of the questionnaire. The survey questionnaire was divided into two sections: demographic data of the participants and perception of participants towards migraine, which consisted of three parts—knowledge towards migraine, attitudes towards migraine, and the expected behavior towards migraine patients.

The demographic data of the participants and their perception of migraine were calculated and presented by frequency and percentage. IBM Statistical Package for the Social Sciences (SPSS) version 23 (IBM Corp., Armonk, NY, USA, 2018) was used for all statistical analyses. The participants were ensured about the anonymity and confidentiality of the data. This study was approved by the Institutional Review Board (IRB) of King Abdullah International Medical Research Center (KAIMRC), Jeddah, Saudi Arabia.

The total number of participants was 385, 367 (95.3%) of them were Saudi nationals. There were 269 (69.9%) males and 113 (29.4%) females in the study. The majority of participants were at the age of 21–30 years old (143 individuals representing 37.1%). Table 1 shows other important demographic data obtained from the questionnaire.

Three hundred and thirty-nine of the participants (88.1%) heard about migraine before. Headache is considered a symptom of migraine by 336 (87.3%), and 170 (44.2%) selected photophobia or photophobia. Relatives and friends are the main source of information for 213 participants (55.3%). Two hundred seventy-three (70.9%) considered migraine to occur as sudden attacks. More than half of the participants (58.2%) do not think migraine is a serious condition that can lead to death. Complications of migraine headache are not known for 240 participants (62.3%). In gender predominance, 137 (35.6%) believed that migraine affects both genders equally. The quality of life for patients with migraine is negatively affected according to 275 (70.9%). In addition, 299 (77.7%) believe that migraine interferes with the functionality of patients. Psychological status can trigger migraine in the opinion of 283 (73.5%). The existence of medications or methods for treating migraine is not known for 195 (50.6%) (Table 2, Figs. 1, 2, 3, 4, 5, 6, 7).

One hundred seventy-eight participants (46.2%) have a family member or a friend who has migraine. Two hundred sixty-one participants (67.8%) believe that migraineurs are not a burden on their families. Three hundred twenty-five (84.4%) think migraineurs should not be isolated from society and 199 (51.7%) agreed to let one of their family marry someone with migraine. More than 70% of the participants (74.3%) do not think migraineurs are suffering from stigmatization. Two hundred fifteen (55.8%) do not have the knowledge to deal with migraineurs. Two hundred forty-four (63.4%) considered migraine to cause a huge psychological and social impact (Table 3).

One hundred sixty-six participants (43.1%) believe that depression and anxiety are more common in migraineurs, and 142 (36.9%) do not think they need psychotherapy. Two hundred sixty participants (67.5%) believe migraineurs can play sports, whereas 137 (35.6%) thought that migraineurs have a risk for car driving. Of all the participants, 229 (59.5%) believed migraineurs to have a normal life span and 254 (66%) agreed they also have normal mental abilities (Table 4).

This study was conducted in Jeddah city, the second-largest city in Saudi Arabia and the main gateway to the holy cities of Makkah and Medina. Although migraine is a common disorder that requires research, education, and public awareness, this is the first comprehensive publication that assesses perception and attitudes towards migraine in Saudi Arabia. The results of this paper will be a landmark for any future publication evaluating changes in the perception and knowledge of migraine in the Saudi community, and whether there is a difference between Jeddah city and other cities and regions in the kingdom.

Our study targeted the general public in Jeddah city in Saudi Arabia with the majority of participants being male (69.9%) and less than the age of 40 (74.0%). Most of the respondents were living with family (90.4%) reflecting the strong social attachment and the belief in the family structure. The monthly income ranged from less than 5000 SR to 20,000 SR with only 5.2% having income more than 20,000 SR. The demographics of the respondents were similar to the other published studies about other neurological disorders from the Kingdom of Saudi Arabia [8, 9]. Therefore, this study can be considered as a representation of the general public.

In the past few years, there has been significant progress in the understanding of the pathophysiology, etiology, and therapeutic aspects of migraine [10]. This was observed in our study since the majority of the participants heard previously about migraine reflecting on the contribution of the government towards education. The percentage of respondents who did not hear about migraine was still considered high (11.9%), and comparison with other nations is not possible since such data are not available in the literature.

Almost half of the sample do not know whether migraine lasts with the patient his whole life and does not improve with age, and 26.0% believe that migraine is a chronic disease that never remits. The classic teaching is that migraine onset is sudden as it takes up to an hour for the headache to reach its peak. In our study, 70.9% of the participants believe that migraine occurs as sudden attacks, which is a correct response.

Although migraine is a chronic condition with intense, pulsating, and often unbearable pain, it is not considered a serious condition that leads to death [11]. In our study, more than one-third of the participants do not know (37.7%) or believe (4.1%) that migraine is a serious condition that could lead to death. In addition, around two-thirds of the participants do not know (51.2%) or believe that there is no medication or method for treating and preventing migraine. It is known as a fact that certain kinds of food may trigger migraine headaches. These include chocolate, cheese, nuts, cured meats, and alcohol [12]. Unfortunately, 59.0% of the participants do not know the kinds of food that trigger a migraine headache, and 17.9% believe that food has no relationship or triggering effect on migraine.

The use of smartphones in daily life has increased and became an important part of many activities including communication with other people, calling family and friends, doing business, and connecting to the internet [13]. In a cross-sectional comparative study, smartphone use has been observed to increase headache duration and frequency in migraine patients [14]. This was also confirmed in another study that showed a significant increase in headache and its duration after the end of a phone call [15]. Basic science researchers suggested that during or after smartphone use, changes occur in the blood–brain barrier and dopamine–opioid system [14]. In our study, more than two-thirds of participants believe that using smart devices set off migraine headaches.

In 2015, migraine was ranked the seventh leading cause of years lived with disability among different age groups [16]. In a study performed by Steiner and colleagues [17], migraine was the first cause of disability in people under the age of 50. Migraine negatively impacts the quality of life, especially in young patients, patients with frequent attacks, those not using a preventive medication, and those suffering from chronic diseases [16]. This was reflected in our study since more than two-thirds of participants believe that migraine has a negative impact on the life of the patients and interferes with functionality. More than two-thirds of the sample surveyed in our study believe that migraineurs are not considered a burden on their families. This is not consistent with studies performed on the burden of migraine on families of migraine patients. In a study published by Buse and colleagues [18], a pervasive burden of migraine on the family was quantified, highlighting the impact on family activities and relationships.

Migraine is a costly disease with a total cost that ranges between $2649 and $8243 per year based on whether it is episodic or chronic. Around two-thirds of the cost are related to direct medical ones [19]. In our survey, almost half of the participants do not know whether migraine has an adverse effect on public finance, and 25.2% believe that migraine has no effect on this important aspect. In addition, 14.0% of the sample surveyed do not believe that migraine causes social impact, and 22.6% have no idea about this matter.

Migraine is a chronic condition that negatively affects sexual functions. In addition, the impairment in sexuality in migraineurs has no relationship to age, educational level, occupational status, duration of the marriage, and fertility. Several studies conducted by different authors and countries reported considerable declines in multiple areas of sexuality [20]. In our study, around 88.0% do not know (59.5%) or believe (28.8%) that migraine does not exert an unfavorable influence on sexual activity.

In a study done by Buce and colleagues, both depression and anxiety levels were reported to be high in migraine sufferers, and migraine has been indicated to cause disability and affect functioning in many areas of life [21]. In our study, subjects surveyed confirmed that migraine headaches can be triggered by psychological status and mood changes (73.5%). They think that migraine causes a huge psychological impact. In a study by Eraslen and colleagues [20], 60% of the patients had mild, moderate, or severe depression on Beck Depression and Anxiety Inventory score. This was also reflected in our study where 43.1% of respondents believe that persons with migraine have depression and anxiety, and 27.5% of migraine sufferers need psychotherapy.

Cultural stigma and misconceptions about migraine were not observed in our study when compared to other neurological conditions such as epilepsy [8, 9]. These beliefs and attitudes towards different health conditions are known to be affected by culture and tradition [22]. Less than 5% of the respondents believe that migraineurs are suffering from stigmatizations. The majority of the sample surveyed believe that migraineurs should not be isolated from society and will allow one of their family to marry someone suffering from migraine.

History of the family and close friends having migraine was reported in 46.2% of the sample with more than half of the respondents being unaware of how to deal with a migraineur. Around 60% of the respondents believe that the life span of persons with migraine is like others. Around two-thirds of the sample believe that the mental abilities of persons with migraine are like others and that persons with migraine can play sports. On the other hand, more than two-thirds of the sample do not know (32.7%) or believe (35.6%) that migraine sufferers should not drive cars.

Over the past two decades, several changes have been observed in the Saudi community including the widespread use of the internet and social media and the decline in the use of paper-based knowledge sources such as magazines, newspapers, educational pamphlets, and books [23]. This was reflected in our study since the internet was a major source of information. In addition, personal experience and communications with relatives and friends were two other sources of information. Although the Saudi healthcare system has witnessed a significant improvement with more than 500 hospitals being established, the contribution of physicians is minimal [24]. This indicates that hospitals and physicians should close the gap and contribute more by educating society about common neurological disorders including migraine.

Regarding the knowledge of the public about the clinical presentation of migraine, most of the participants believe that migraine affects all age groups with no specific gender predilection. Only 86 participants (22.3%) know that this disease affects young adults and 76 participants (19.7%) believe in the female predilection of the disease. Although most of the participants (81.3%) believe that headache is the major presentation of migraine, misconceptions of the clinical presentation include permanent visual loss (2.3%), permanent hemiplegia (2.3%), and inability to control urination (1.3%).

Regarding causes of migraine, a substantial number of the participants (31.9%) do not know the cause of migraine, while 185 participants (48.1%) believe that the cause is not organic or genetic (head trauma, psychiatric disorder, and charm). Most of the participants do not know the complications of migraine and misconceptions regarding this aspect include fever (4.7%), mental retardation (3.4%), permanent disability (3.1%), and cancer (2.3%). Only 78 participants believe that migraine is a relatively benign condition with no complications.

In our survey, most of the participants believe that migraine is a medical condition with several medications available. Misconceptions regarding the treatment of migraine include surgery (4.4%), ironing therapy (4.4%), and electric shock (0.3%). Other treatments include reading Quran (21.0%), and yoga and meditation (8.3%).

This study had several limitations such as selecting a sample from only one city in Saudi Arabia, the small sample size, and the recall bias. Conducting this study in multiple cities in Saudi Arabia would be of extreme importance to identify knowledge gaps and allow for the development of nationwide targeted educational endeavors. Furthermore, a larger sample size would be much more representative of the population’s knowledge and attitude as well as provide a more accurate understanding. Finally, recall bias, which is common in studies using self-reporting, is an inevitable limitation of cross-sectional studies.

The present study demonstrated a lack of knowledge in certain aspects of migraine in Jeddah, Saudi Arabia. This study will serve as a basis for developing a health educational program aiming to increase public awareness about migraine. It will also improve the understanding of society regarding migraine, which will subsequently improve the way they interact with migraineurs and understand their difficulties. In addition, finding a trusted source for information about different kinds of medical conditions including migraine is crucial in educating the community and providing them with the most recent and correct information.