Perception of headache-related disability in individuals with and without headache disorders working in a municipal government in the Tokyo Metropolitan Area

Abstract

Aim

The discrepancy in headache perception between people with and without headache disorders remains poorly studied. We aimed to gain insights into the factors that determine headache perception in individuals with and without headache disorders.

Methods

A questionnaire-based headache survey was administered to municipal employees in the Tokyo Metropolitan Area. The participants were divided into four groups: Group A, individuals with current headache; Group B, individuals with a history of headache; Group C, individuals without headache and without nearby individuals with headaches; and Group D, individuals without headache but with nearby individuals with headaches. In Groups A and B, migraine without aura (MO), migraine with aura (MA), probable MO (pMO), and tension-type headache (TTH) were classified according to the International Classification of Headache Disorders, 3rd edition (ICHD-3). All participants were asked about their perceptions of headaches.

Results

The response rate was 52.3% (1156 males and 764 females). There were 518 individuals in Group A (MO, 116; MA, 93; pMO, 95; TTH, 214) and 137 in Group B (MO, 24; MA, 24; probable MO, 29; TTH, 60). In Group A, headache severity (headache intensity, duration, and frequency), visual aura, and throbbing pain contributed to the perception of headaches as disabling. Individuals with MA were more likely to consider their headaches disabling than those with TTH (p = 0.0003). However, there were no differences in the proportion of respondents who perceived headaches as disabling across headache disorders in Group B. The perception of headaches as disabling was more common in individuals without headaches (Groups C and D combined) than in those with headaches (p < 0.0001 vs. Group A; p = 0.0078 vs. Group B). However, 9.7% of them responded that headaches were not a disease. In individuals without headaches, males were more likely than females to consider headaches life-threatening (p = 0.0037). Among females, more individuals considered headaches disabling in Group D than in Group C (p = 0.0306).

Conclusion

Headache severity, visual aura, and throbbing pain appear to be key therapeutic targets for attenuating headache-related disability. Headache perception varied between individuals with and without headaches, and these differences were further modified by sex among those without headaches. These findings suggest that males without headaches are more likely to perceive headaches as a serious condition, whereas females without headaches appear to be influenced by the presence of nearby individuals with headaches.

Graphical abstract

This is a visual representation of the abstract.

Keywords

Primary headache disorders migraine aura disability stigma administrative body

Introduction

Migraine and other primary headache disorders constitute a complex group of neurological conditions with considerable variability in clinical presentation and underlying mechanisms, and without established biomarkers.^1–3 Thus, people who experience regular headaches may be misunderstood and even stigmatized by people without headaches. For example, according to the Global Burden of Disease Study 2023, migraine is among the leading causes of disability in terms of years lived with disability (YLDs), especially among young populations.4 However, a study by Shapiro et al.5 reported that 69.3% of individuals without active migraine had at least one stigmatizing attitude toward those with migraine. Stigma is a social, multi-step process in which groups of individuals may be subject to stereotyping, prejudice, and discrimination based on a shared characteristic or trait.6–5 This psychological burden can adversely affect the quality of life and health outcomes of individuals with migraine.^6,7 Importantly, stigma is pervasive among the public, and structural stigma occurs when public stigma and the negative attitudes and stereotypes it entails are incorporated into policies, laws, and organizational practices,8 –6 To address these issues, it is crucial to analyze the gap in headache perception between individuals with and without headache disorders.

Previously, we reported the prevalence of migraine and tension-type headaches (TTH) among employees of a municipal administrative body in the Tokyo Metropolitan Area, where migraine was found to cause considerable productivity loss.10 However, perceptions about headaches have not yet been elucidated in this study population. In the present study, we aimed to analyze headache perception among individuals with current and past headache disorders, as well as those without headache disorders, in this cohort.

Methods

Study design and setting

This was a cross-sectional questionnaire-based survey of municipal employees of Ichikawa City conducted between August 22, 2024, and September 30, 2024. Ichikawa is a city adjacent to Tokyo with a population of approximately 500,000 people. Details of the study method have been described elsewhere.10 Briefly, all employees received an email inviting them to participate in the survey. Of these, approximately 80% were clerical workers, and the remainder were technical workers, employees at fire stations or welfare facilities. Only those who provided informed consent were permitted to proceed to the online headache survey described below. The questionnaire, developed in plain Japanese, comprised six parts: demographics, headache status, headache characteristics relevant to diagnosis, headache impact on work productivity, interictal burden, and perception of headaches.10 All participants provided informed consent to participate in this study under the condition that their data would be anonymized. Ethical approval for the present study was obtained from the Tokyo Dental College Ichikawa General Hospital Ethics Committee (authorization number: I 24–05). This study was conducted in accordance with the guidelines of the World Medical Association's Declaration of Helsinki. The present study was reported in accordance with the STROBE guidelines.

Classification of study participants by headache status

Study participants were asked whether they had experienced chronic headache for 3 months or longer in the past 12 months or if they had experienced such headaches before that period. Those who did not have any headaches were asked whether they knew any nearby individuals with headaches. This yielded four groups: Group A, individuals with a current headache; Group B, individuals with a history of headache; Group C, individuals without headache and without nearby individuals with headaches; and Group D, individuals without headache but with nearby individuals with headaches (Figure 1(a) and (b)).

Figure 1.

Study group classification. Study participants were classified into Groups A, B, C, and D as depicted in the schematic representative (a) and flowchart (b).

Headache diagnosis and symptomatology

The questionnaire asked about the most distressing headaches. Based on the clinical information, headache disorders were classified as migraine without aura (MO), migraine with aura (MA), probable MO, and TTH according to the diagnostic criteria of the International Classification of Headache Disorders (ICHD-3). Undetermined headaches were excluded. Study participants were asked to report the characteristics, frequency, and intensity of headaches and the presence of nausea/vomiting, photophobia, phonophobia, visual field defects, and scintillating scotomas. Headache intensity was reported according to a Numeric Rating Scale (NRS; 0–10), wherein NRS scores of 1–4, 5–7, and 8–10 were categorized as mild, moderate, and severe, respectively. Response options for headache frequency included once every few months and 1, 2–4, 5–8, 9–14, and ≥ 15 days per month, while options for headache duration included < 3, 3–4, 4–12, 12–24, and > 24 h. The respondents were also asked about their history of medical consultations for headaches.

Headache perception inquiry

The study participants were asked how they perceived their headaches. The response choices for this question were “not a disease,” “a mild disease,” “a disabling disease,” “a life-threatening disease,” or “other.” This question was posed to all study participants, irrespective of their headache status.

Statistical analysis

For each question, response proportions are expressed as percentages, and between-group comparisons of response frequencies were analyzed using Fisher's exact test. Comparisons were conducted according to headache status, diagnosis, history of medical consultation for headache, sex, and the presence of nearby individuals with headaches. Logistic regression analysis was performed to examine the effects of the clinical features of headaches (intensity, duration, and frequency) among individuals with headache disorders and the effects of the presence of nearby individuals with headaches, sex, and age group on headache perception among those without headaches. No imputation was made for missing data. Statistical analyses were performed using GraphPad Prism 10 (GraphPad Software, Boston, MA, USA) or SPSS Statistics 29 (IBM, Armonk, NY, USA), depending on the type of statistical analysis. We considered two-tailed p values < 0.05 to indicate statistical significance.

Results

The response rate was 52.3%, with 1156 males and 764 females. There were 518 individuals in Group A (MO, 116; MA, 93; probable MO, 95; TTH, 214) and 137 individuals in Group B (MO, 24; MA, 24; probable MO, 29; TTH, 60) (Figure 1(a) and (b)). The demographic and headache characteristics are presented in Table 1. Regarding individuals without headaches, Groups C and D comprised 692 and 466 individuals, respectively (Figure 1(a) and (b)).

Table 1.

Demographic data by headache group/type in Group A and Group B.

Group	Group A				Group B
Headahce group/type	MO	MA	pMO	TTH	MO	MA	pMO	TTH
Headahce group/type	N = 116	N = 93	N = 95	N = 214	N = 24	N = 24	N = 29	N = 60
Age groups, n (%)
20–29	25 (21.6)	12 (12.9)	13 (13.7)	26 (12.1)	3 (12.5)	2 (8.3)	0 (0)	2 (3.3)
30–39	31 (26.7)	23 (24.7)	19 (20.0)	51 (23.8)	3 (12.5)	5 (20.3)	2 (6.9)	8 (13.3)
40–49	32 (27.6)	17 (17.9)	26 (27.4)	47 (22.0)	6 (25.0)	8 (20.3)	5 (17.9)	12 (20.0)
50–59	23 (19.8)	33 (34.7)	32 (33.7)	70 (32.7)	9 (37.5)	5 (20.8)	13 (44.8)	26 (43.3)
60–69	5 (4.3)	8 (8.4)	5 (5.3)	20 (9.3)	3 (12.5)	4 (16.7)	9 (31.0)	12 (20.0)
Sex, n (%)
Male	23 (19.8)	40 (43.0)	35 (36.8)	110 (51.4)	4 (16.7)	8 (33.3)	12 (41.4)	38 (63.3)
Female	93 (80.2)	52 (55.9)	60 (63.2)	103 (48.1)	24 (83.7)	16 (66.7)	17 (58.6)	21 (35.0)
Not specified	0	1 (1.1)	0	1 (0.5)	0 (0)	0 (0)	0 (0)	1 (1.7)

Headache perception among individuals with headache disorders

In Group A, 21.4%, 48.3%, 26.1%, and 3.7% responded that their headaches were “not a disease,” “a mild disease,” “a disabling disease,” and “a life-threatening disease,” respectively (Figure 2(a)). Individuals with migraine tended to consider headaches disabling compared to those with TTH (Figure 2(b)). A significant difference was observed between the MA and TTH groups (37.6% vs. 18.7%, p = 0.0003, Fisher's exact test; Figure 2(c)).

Figure 2.

Headache perception among individuals with current headache disorders (Group A). (a) Percentages of responses about headache perception from all the respondents. (b) Breakdown of data regarding headache perception from each headache disorder. (c) Proportion of individuals who considered headaches disabling in each headache disorder. Statistical analysis was performed using Fisher's exact test. MO, migraine without aura; MA, migraine with aura; pMO, probable migraine without aura; TTH, tension-type headache.

In Group B, 17.5%, 42.3%, 31.4%, and 4.4% responded that their headaches were “not a disease,” “a mild disease,” “a disabling disease,” and “a life-threatening disease,” respectively (Figure 3(a)). The proportion of individuals who considered their headaches disabling did not differ among the MO, MA, probable MO, and TTH groups (Figures 3(b) and (c)). Although statistical significance was not reached, the proportion of individuals with MA who responded that headaches were not a disease was higher in Group B than in Group A (p = 0.0545, Fisher's exact test).

Figure 3.

Headache perception among individuals with past headache disorders (Group B). (a) Percentages of responses about headache perception from all the respondents. (b) Breakdown of data regarding headache perception from each headache disorder. (c) Proportion of individuals who considered headaches disabling in each headache disorder. Statistical analysis was performed using Fisher's exact test. MO, migraine without aura; MA, migraine with aura; pMO, probable migraine without aura; TTH, tension-type headache.

Effects of clinical features on headache perception

In Group A, logistic regression analysis controlling for age and sex revealed that headache intensity, duration, and frequency significantly contributed to the perception of headache as disabling (Table 2). Those who had visual aura and throbbing headaches were significantly more likely to consider their headaches disabling (Figure 4(a)). The same was true for individuals with a history of seeking medical care for headaches, particularly those currently receiving care (Figure 4(b)).

Figure 4.

Predictors associated with considering headaches as disabling among individuals with headache disorders (Group A). (a) Clinical features associated with considering headaches as disabling among individuals with headache disorders. (b) Association between medical consultations for headache and perception of headaches as disabling, with individuals who had never sought medical care for headaches serving as the reference group. Statistical analyses were performed using Fisher's exact test. OR, odds ratio; CI, confidence interval.

Table 2.

Predictors of clinical features for headache perception as disabling in Group A (N = 518).

Predictor	B		Wald	p value	Exp (B)
	Mean	SE			Mean	95% CI
	Mean	SE			Mean	Lower	Upper
Headache intensity	0.203	0.052	15.009	< 0.001	1.123	1.106	1.358
Headache duration	0.315	0.098	10.293	0.010	1.370	1.130	1.661
Headache frequency	0.213	0.079	7.299	0.007	1.237	1.06	1.444

In these analyses, we examined the effect of headache intensity, frequency, and duration in separate models adjusting for age and sex.

In individuals with past headache disorders, clinical features did not affect the perception of headaches as disabling (Supplementary Table 1).

Headache perception among individuals without headache

The demographic data of individuals without headaches are shown in Table 3. Among individuals without headache, 4.3%, 35.1%, 43.3%, and 9.7% responded that headaches were “not a disease,” “a mild disease,” “a disabling disease,” and “a life-threatening disease,” respectively. The proportion of respondents endorsing the “disabling disease” response was significantly higher than in those with headache disorders (p < 0.0001, vs. Group A; p = 0.0078, vs. Group B; Fisher's exact test). In individuals without headache, males were significantly more likely than females to consider headaches life-threatening (11.2% vs. 5.7%, p = 0.0037, Fisher's exact test, Figure 5(a)). Among females, more individuals in Group D than in Group C considered headaches disabling (49.3% vs. 37.0%, p = 0.0306, Fisher's exact test, Figure 5(b)). There were no differences in the proportion of individuals of either sex who perceived headache as a life-threatening disease between the two groups (Figure 5(b)). We also explored the effects of the presence of nearby individuals with headaches, sex, and age on headache perception using logistic regression analysis, which revealed that male sex was a significant factor in considering headaches life-threatening (p = 0.003, Supplementary Table 2).

Figure 5.

Headache perception among individuals without headache. (a) Proportion of respondents for each response choice by sex. (b) Comparison between Groups C and D by sex. Statistical analysis was performed using Fisher's exact test.

Table 3.

Demographic data of individuals without headache disorders (Group C and Group D).

Age group	Group C			Group D			Total
Age group	Male	Female	Unidentified	Male	Female	Unidentified	Total
20–29	66	19	−	33	19	−	137
30–39	115	33	−	78	25	−	251
40–49	89	36	1	58	49	1	234
50–59	165	49	1	114	41	−	370
60–69	88	24	−	26	21	−	159
70–	5	1	−	1	−	−	7
Total	528	162	2	310	155	1	1158

Discussion

In the present study, we examined headache perception in individuals with current and past headache disorders and those without headache among municipal government workers in the Tokyo Metropolitan Area. Among individuals with current headache disorders, visual aura, throbbing headache, and headache severity were significantly associated with the perception of headache as disabling. Although photophobia has been shown to be associated with migraine-related disability in the American Registry for Migraine Research (ARMR),11 our data did not support such a finding. Epidemiological studies of migraine conducted in Asian countries have reported a lower prevalence of photophobia (35–60%) than that observed in Western populations (74–88%).12 Therefore, the discrepancy in findings may be attributable to ethnic differences. It is important to understand what clinical features associated with headache disorders are disabling for patients. Such knowledge can inform the design of clinical trials to evaluate novel treatments targeting these features, thereby facilitating the development of therapies with meaningful clinical benefit. In addition to objective measures, such as changes in migraine or headache days from baseline, headache-specific patient-reported outcome measures (PROMs) scores are increasingly incorporated into key clinical endpoints. However, the heterogeneity of PROMs has been recognized as a limitation, with some PROMs unable to sufficiently capture the burden of disease.13 Moreover, the single-item Patient's Global Impression of Change (PGIC) has been reported to correlate more closely with treatment efficacy than multi-item instruments such as the Headache Impact Test-6 (HIT-6) and the Migraine Disability Assessment (MIDAS).14 From this perspective, the simple question used in the present study may offer an advantage in capturing respondents’ overall and intuitive impressions.

A significantly higher proportion of individuals with MA endorsed headache as a disabling condition than those with TTH. However, this difference in perception was not observed between patients with MA and TTH among past individuals with headaches. Visual aura is likely to cause anxiety in patients because it suggests that something may be wrong with their brain and/or eyes.^15–17 This view is supported by several studies showing that aura is associated with more psychological burden and disability among individuals with migraine.^18–22 Nevertheless, such concerns may diminish as aura episodes become more temporally distant. On the positive side, our findings imply that proper management may dissipate such aura-associated unfavorable psychopathological effects.

The proportion of respondents who considered headaches disabling was higher among individuals without headache than among those with current or past headache disorders. This finding indicates a perception gap between those with and without lived headache experiences. Although this overestimation of headache disability in those without headache was contrary to our expectation, the OVERCOME (US) study recently pointed out that stigmatizing attitudes toward individuals with migraine are least common among respondents without any headache experience.5 In this context, headache experiences may help attenuate the sense of disability in individuals with headache disorders. In addition, the responses from the TTH group may have contributed to an overall reduction in perceived headache-related disability among individuals with headache disorders.

The proportion of individuals without headaches who perceived headaches as disabling was consistent with a previous report, whereas the percentage of respondents who replied that headaches were not a disease was slightly higher in our data.23 We found that sex differences affected headache perception among individuals without headaches. Males were approximately twice as likely as females to consider headaches life-threatening, whereas the perception of headaches as disabling did not differ by sex. We speculate that the lower prevalence of primary headache disorders in males may contribute to perceiving headache as a relatively unfamiliar yet serious condition. Furthermore, the presence of nearby individuals with headaches significantly increased the proportion of those who perceived headaches as disabling, only in females. Collectively, males tended to consider headaches as a more serious condition than females. This may lead to an overestimation of headache-related disability. In contrast, females may become more aware of the disability associated with headaches in the presence of nearby individuals with headaches, compared with males. Given that empathy is commonly defined as the ability to understand and share the feelings or experiences of others, these results may indicate that females are more empathetic toward individuals with headaches. Roberts-West et al.24 –26 Thus, in the context of pain disorders, perceptions and stigmatizing attitudes among individuals without pain disorders are inconsistent. To gain insights into stigma-related studies, study subjects should be carefully selected depending on the research purpose. Approximately 40% of respondents without headaches indicated that headache is “not a disease” or is “a mild disease,” suggesting the presence of stigma among administrative staff. This finding is concerning, as it may be linked to structural stigma.

Limitations

As this questionnaire-based survey was originally conducted to investigate the prevalence and disease conditions of primary headache disorders, we posed only a simple question: “What do you perceive about headaches?” Hence, detailed information regarding the background of their responses was lacking. In particular, there were no direct questions related to stigmatization, empathy, depression, or anxiety. Moreover, the number of individuals with past headache disorders was small, hampering statistical analysis with sufficient power. Finally, because our questionnaire survey was conducted in a city office, the generalizability of our study may be limited.

Conclusions

Our results highlight the importance of visual aura, throbbing headache, and headache severity in terms of intensity, duration, and frequency as factors associated with the perception of headache as disabling in individuals with current headache disorders. However, the impact of visual aura was not significant in patients with past headache disorders. Counterintuitively, individuals without headaches were more likely to perceive headaches as disabling than those with headache disorders. We also found a sex difference in headache perception in the former population, such that males were more likely to consider headaches as a serious condition. In contrast, the perception of headaches as a disabling disease in females were more influenced by the presence of nearby individuals with headaches. It may be necessary to consider such sex differences when studying the stigmatization of individuals with headaches. Lastly, our data suggest that headache-related stigma might be a real problem among administrative body employees.

Article highlights

Headache severity, visual aura, and throbbing pain should be set as key therapeutic targets for attenuating headache-related disability.

A discrepancy in headache perception was observed between individuals with and without headaches.

In individuals without headaches, males tended to consider headaches as a serious condition, whereas females appeared to be more influenced by the presence of nearby individuals with headaches.

Supplemental Material

sj-xlsx-1-cep-10.1177_03331024261444665 - Supplemental material for Perception of headache-related disability in individuals with and without headache disorders working in a municipal government in the Tokyo Metropolitan Area

Supplemental material, sj-xlsx-1-cep-10.1177_03331024261444665 for Perception of headache-related disability in individuals with and without headache disorders working in a municipal government in the Tokyo Metropolitan Area by Mamoru Shibata, Toshihiko Shimizu, Ryo Takemura and Fumihiko Sakai in Cephalalgia

Supplemental Material

sj-xlsx-2-cep-10.1177_03331024261444665 - Supplemental material for Perception of headache-related disability in individuals with and without headache disorders working in a municipal government in the Tokyo Metropolitan Area

Supplemental material, sj-xlsx-2-cep-10.1177_03331024261444665 for Perception of headache-related disability in individuals with and without headache disorders working in a municipal government in the Tokyo Metropolitan Area by Mamoru Shibata, Toshihiko Shimizu, Ryo Takemura and Fumihiko Sakai in Cephalalgia

Footnotes

Acknowledgments:

The authors thank the staff of the Department of Public Health and Medical Services, Ichikawa City Office, for their cooperation with this study.

ORCID iDs

Mamoru Shibata

Ryo Takemura

Ethical considerations

Ethical approval for the present study was obtained from the Tokyo Dental College Ichikawa General Hospital Ethics Committee (authorization number: I 24–05).

Consent to participate

All participants provided informed consent to participate in this study under the condition that their data would be anonymized.

Consent for publication

The authors agree to publish with Cephalalgia if the manuscript is accepted.

Author contributions

MS conceived the study and requested assistance from the staff at the Department of Public Health and Medical Services, Ichikawa City Office. All authors participated in the study design and interpretation of the study results, and in the drafting, critical revision, and approval of the final version of the manuscript. RT supervised statistical analyses.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The present study was supported by a research fund from Tokyo Dental College Ichikawa Genral Hospital.

Declaration of conflicting interests

The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: MS received consultant fees and speaker honoraria from Amgen K.K., Daiichi Sankyo Company, Limited, Eisai Co., Ltd, Eli Lilly Japan K.K., Otsuka Pharmaceutical Co., Ltd, Pfizer Japan, and AbbVie Japan, as well as a research grant from Otsuka Pharmaceutical Co., Ltd outside the present study. TS received speaker honoraria from Amgen K.K., Daiichi Sankyo Company, Limited, and Eli Lilly Japan K.K. FS received speaker honoraria from Amgen K.K., Daiichi Sankyo Company, Limited, Eli Lilly Japan K.K., and Otsuka Pharmaceutical Co. Ltd

Data availability

The datasets generated and analyzed in the present study are not publicly available.

Open practices

Not applicable

Supplemental material

Supplemental material for this article is available online.

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