In this national survey of people with headache in Denmark, a high-income country with readily accessible services, we identified a low healthcare utilization rate. Even among those with the highest disease burden (weekly headache), one-quarter had never consulted a medical doctor in their lifetimes. This was despite a sampling method that, very probably, introduced a strong selection bias towards those most concerned about headache, and, presumably, most likely to consult. Utilization rate among the general Danish population with headache is almost certainly lower – and perhaps much lower – than in our sample. Furthermore, headache-attributed burden was strongly associated with a negative impact on social life, higher rates of presenteeism, and lack of understanding from those around them.
In a web-based survey of panelists with migraine from six different countries (United States, Canada, France, United Kingdom, Germany, and Australia), only about one-third of those with chronic migraine in the United States (who have the greatest disease burden) had visited a healthcare provider for their headache within the past three months . Among those with episodic migraine, the healthcare utilization rate was even lower (one-fifth of US-based individuals with episodic migraine) . While other countries in the study reported higher rates, there were still substantial proportions of people with headache who did not seek headache care [5, 6]. In general, as we found, the lower the disease burden, the lower the probability of consultation, but even high burden does not raise it to anywhere near 100%.
The underlying reasons are certainly multifactorial. Clinical, social, and political/economical barriers hinder people with headache from accessing healthcare services who would otherwise benefit from them [1, 8]. Inadequate training of healthcare providers constitutes the principal clinical barrier, with limited training in headache medicine during medical school that continues into residency [8, 9]. Reports from other countries consistently demonstrate that there is room for improvement of services, in which diagnostic delay, misdiagnosis, unsatisfactory management and suboptimal outcomes continue to affect headache care . In one transcontinental study of people with migraine who had been referred to tertiary care, the initial diagnosis was incorrect in more than two-thirds , inevitably undermining subsequent management. Delays and poor outcomes are highly discouraging, resulting in reduced expectations and diminished enthusiasm for utilizing headache services. Danish headache services are considered to be among the best in Europe ¸ but are unlikely to be entirely free of these factors (data specific for Denmark are unavailable).
Social barriers include poor awareness of headache and a tendency among the general public to perceive headache disorders as not serious. They do not cause death, but this perception has much deeper roots than this: many people do not give credence to the possibility that headache can be significantly disabling. Both structural and functional qualities of a social network are associated with health [12, 13]. A social network exerts pressure on each member to adapt their health behavior to the consensus of the group . But stigmatization and trivialization of headache as a minor annoyance confront people with headache [1, 15, 16]. An inevitable consequence of negative attitudes towards headache is a to higher rate of presenteeism (remaining work despite having headache) [17, 18]. In support of this proposition, half of our respondents reported some level of lack of understanding – real or perceived – from those around them. They act as deterrents, even in wealthy nations and even among those with high disease burden, from seeking headache care . Very probably, they also contribute to a high rate of presenteeism.
Political barriers include governmental failure to give due priority to headache services, and to allocate the resources they require . Economic barriers operate at both provider and consumer levels. Governments are dissuaded by the cost of universal headache care, overlooking the ill-health and lost-productivity penalties of inaction which would be greatly offset by better care . While the economic benefits of good headache care accrue also at individual level, and are potentially cost saving even for those with limited financial resources , the need to pay for care can be challenging. Lack of universal healthcare coverage, or insurance, is a barrier to care in the United States, for example, while the potential loss of pay may contribute to high rates of presenteeism there . But Denmark provides free access to healthcare, and, in theory, universal coverage for all its residents, so the explanations of our findings have to be found elsewhere.
Strengths and limitations
A strength of the study was the relatively large sample size of > 6,500 respondents in a country with a population of fewer than 5 million adults. Another was the anonymity of the respondents, which allowed us to request information that people might not otherwise feel comfortable discussing. Both of these derived from the sampling method. However, this also conferred limitations. We could not relate our findings to detailed demographics characteristics of respondents, or they medical histories, since we only enquired only into age and gender. The likely biases imposed by the sampling method and participating proportion have been identified already. However, these almost certainly led to conservative findings, at least regarding failure to consult, which in all probability was under-estimated. While a large population of Denmark are Facebook users, not all of the population will be equally represented among these: in particular, older adults (above middle age) are less likely to have been exposed to the recruitment campaign . These are people with a lower probability of having headache, or, if they do, of having a high attributable burden. In addition, categorizing disease burden, as we did for simplification (at least once a week, a couple of times a month or a couple of times a year), might have been a limiting factor in estimation of disease burden.