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Editorial. Valuing headache’s solution
The Journal of Headache and Pain volume 22, Article number: 54 (2021)
Headache disorders are ubiquitous, common and often the cause of lifelong disability. This is so well established that it should not need repeating. Yet it does .
Collectively, according to the 2019 Global Burden of Disease study (GBD2019), headache disorders are the world’s third leading cause of disability, and top cause in young adults, responsible globally for 46.6 million years lived with disability (YLDs), 5.4 % of all YLDs [2, 3]. Because disability leads to lost productivity, headache disorders have a huge financial impact. In Europe, their total annual cost in 2012 was estimated at well in excess of €100 million .
Effective treatments exist for the disorders most responsible: migraine, tension-type headache and medication-overuse headache . These treatments should, in a well-ordered world, substantially mitigate the losses both to health and to the world’s economies. The reality is very different. GBD2019 drew attention to headache disorders, remarking that their prominence among the ranked causes of lost health had “received little attention in global health policy debates” [2, 3]. This is true . Everywhere, headache disorders are under-recognized in society and under-prioritized and under-resourced in health policy. Health-care systems that should provide these treatments either do not exist or, where they do, fail to reach many who need them . Accordingly, headache disorders remain under-diagnosed and undertreated in populations everywhere .
While this is essentially a political failure, its causes mostly lie in education failures, occurring at all levels – political, health-care provider and general public . The consequences are seen on these same levels. Health-care providers, without the requisite training or resources to manage headache effectively, achieve poor and disillusioning outcomes. People with headache who would benefit from care find services unavailable, fragmentary or difficult to access. Dissatisfied with health care that is inadequate, they fail to seek it and adhere poorly to it. Change is hard to achieve: policy makers, seeing a level of demand for care that is far below verifiable need, remain unmoved .
Two programmes of action have given rise to the content of this themed issue of the Journal of Headache and Pain.
In 2015, the European Brain Council (EBC) developed its Value-of-Treatment (VoT) project, building on the success of its earlier Cost of Brain Disease database . The immediate purposes behind VoT were two-fold: first to identify barriers, stumbling blocks, pinch-points and dead-ends in the “patient’s journey through disease” (specifically, nine common neurological diseases, including headache), and second to assess the potential cost-effectiveness of interventions to ease the journey and improve care and outcomes. Overarching these was the political objective of producing evidence not only of need for change but also of the likely economic benefits of evidence-based change. Two of the manuscripts here have their origin in this project [8, 9].
Others, including three preparing the ground for economic analyses [10,11,12], spring from the Global Campaign against Headache. Launched in 2003 by the World Health Organization (WHO) in collaboration with the major international headache societies [13, 14], the Campaign has, since 2009, been conducted by Lifting The Burden (LTB), a UK-registered non-governmental organization in official relations with WHO [15, 16]. Over the years, LTB has gathered evidence from around the world of the magnitude of public ill health attributable to headache and of the inadequate responses to it , supporting and building research capacity in many countries while doing so . It has endeavoured to use this evidence to influence policy. In particular, by informing successive GBD studies [1,2,3], LTB has raised political and public awareness of headache and the burdens it imposes. Finally, LTB has proposed an efficient and effective health-care solution [6, 17,18,19], pursuing the Campaign’s ultimate purpose. That solution is structured headache services .
But, if structured headache services are equitably to reach all who might benefit, the required up-front investment will be substantial. It is the task of this themed series of manuscripts to show value in that investment.
The content that follows, with a focus on Europe but relevant worldwide, updates the thinking behind the structured headache services model, and refines their description. With an authorship from 32 countries, it explains how these services should be organized, and how the model might be adapted for different settings . It develops the methodology for economic evaluation of the model , including – necessary for this purpose – the introduction of a universal outcome measure applicable equally to acute and preventative treatments and to systems delivering them . It applies this methodology to headache services in Europe, finding and reporting clear evidence of the model’s cost-effectiveness to justify the up-front investment in its implementation . In doing this, it contributes to a better understanding, underpinned by robust empirical evidence, of the complex relationship between headache-attributed disability and lost productivity [11, 12] – a key factor in economic evaluation. Finally, it comments on the policy priorities for headache in the current context of health-systems reforms, and how we can ensure that policy, influenced by evidence built from sound research, is based on solid scientific knowledge .
Availability of data and materials
Steiner TJ, Stovner LJ, Vos T, Jensen R, Katsarava Z (2018) Migraine is first cause of disability in under 50s: will health politicians now take notice? J Headache Pain 19:17
GBD 2019 Diseases and Injuries Collaborators (2020) Global burden of 369 diseases and injuries in 204 countries and territories, 1990–2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet 396:1204–1222
Steiner TJ, Stovner LJ, Jensen R, Uluduz D, Katsarava Z, on behalf of Lifting The Burden: the Global Campaign against Headache (2020) Migraine remains second among the world’s causes of disability, and first among young women: findings from GBD2019. J Headache Pain 21:137
Linde M, Gustavsson A, Stovner LJ, Steiner TJ, Barré J, Katsarava Z, Lainez JM, Lampl C, Lantéri-Minet M, Rastenyte D, Ruiz de la Torre E, Tassorelli C, Andrée C (2012) The cost of headache disorders in Europe: the Eurolight project. Eur J Neurol 19:703–711
Steiner TJ, Jensen R, Katsarava Z, Linde M, MacGregor EA, Osipova V, Paemeleire K, Olesen J, Peters M, Martelletti P on behalf of the European Headache Federation and Lifting The Burden: the Global Campaign against Headache (2019) Aids to management of headache disorders in primary care (2nd edition). J Headache Pain 20:57
World Health Organization and Lifting The Burden (2011) Atlas of headache disorders and resources in the world 2011. Geneva: WHO, Available at: http://www.who.int/mental_health/management/atlas_headache_disorders/en/2011
Olesen J, Gustavsson A, Svensson M, Wittchen H-U, Jönsson B: CDBE2010 study group, European Brain Council (2012) The economic cost of brain disorders in Europe. Eur J Neurol 19:155–162
Tinelli M, Leonardi M, Paemeleire K, Mitsikostas D, Ruiz de la Torre E, Steiner TJ, on behalf of the European Brain Council Value of Treatment Headache Working Group, the European Headache Federation, the European Federation of Neurological Associations and Lifting The Burden: the Global Campaign against Headache (2021) Structured headache services as the solution to the ill-health burden of headache. 2. Modelling effectiveness and cost-effectiveness of implementation in Europe: Methodology. J Headache Pain 22 (in press)
Tinelli M, Leonardi M, Paemeleire K, Raggi A, Mitsikostas D, Ruiz de la Torre E, Steiner TJ, on behalf of the European Brain Council Value of Treatment Headache Working Group, the European Headache Federation, the European Federation of Neurological Associations and Lifting The Burden: the Global Campaign against Headache (2021) Structured headache services as the solution to the ill-health burden of headache. 3. Modelling effectiveness and cost-effectiveness of implementation in Europe: findings and conclusions. J Headache Pain 22 (in press)
Steiner TJ, Linde M, Schnell-Inderst P (2021) A universal outcome measure for headache treatments, care-delivery systems and economic analysis. J Headache Pain 22 (in press)
Kothari SF, Jensen RH, Steiner TJ (2021) The relationship between headache-attributed disability and lost productivity. 1. A review of the literature. J Headache Pain 22 (in press)
Thomas H, Kothari SF, Husøy A, Jensen RH, Katsarava Z, Tinelli M, Steiner TJ (2021) The relationship between headache-attributed disability and lost productivity. 2. Empirical evidence from population-based studies in six disparate countries. J Headache Pain 22 (in press)
Steiner TJ (2004) Lifting the burden: the global campaign against headache. Lancet Neurol 3:204–205
Steiner TJ (2005) Lifting The Burden: The global campaign to reduce the burden of headache worldwide. J Headache Pain 6:373–377
Steiner TJ, Birbeck GL, Jensen R, Katsarava Z, Martelletti P, Stovner LJ (2011) The Global Campaign, World Health Organization and Lifting The Burden: collaboration in action. J Headache Pain 12:273–274
Lifting The Burden. At: http://www.l-t-b.org
Steiner TJ, Antonaci F, Jensen R, Lainez JMA, Lantéri-Minet M, Valade D on behalf of the European Headache Federation and Lifting The Burden: the Global Campaign against Headache (2011) Recommendations for headache service organisation and delivery in Europe. J Headache Pain 12: 419–426
Steiner TJ, Jensen R, Katsarava Z, Uluduz D, Tinelli M, Thomas H, Stovner LJ (2019) The healthcare solution to headache. Ch 15. In: Steiner TJ, Stovner LJ (eds) Societal impact of headache. Burden, costs and response. Springer Nature, Cham, pp 203–224
Steiner TJ, Jensen R, Katsarava Z, Stovner LJ, Uluduz D, Adarmouch L, Al Jumah M, Al Khathaami AM, Ashina M, Braschinsky M, Broner S, Eliasson JH, Gil-Gouveia R, Gómez-Galván JB, Gudmundsson LS, Herekar AA, Kawatu N, Kissani N, Kulkarni GB, Lebedeva ER, Leonardi M, Linde M, Luvsannorov O, Maiga Y, Milanov I, Mitsikostas DD, Musayev T, Olesen J, Osipova V, Paemeleire K, Peres MFP, Quispe G, Rao GN, Risal A, Ruiz de la Torre E, Saylor D, Togha M, Yu S-Y, Zebenigus M, Zenebe Zewde Y, Zidverc-Trajković J, Tinelli M on behalf of Lifting The Burden: the Global Campaign against Headache (2021) Structured headache services as the solution to the ill-health burden of headache. 1. Rationale and description. J Headache Pain 22 (in press)
Tinelli M, Leonardi M, Steiner TJ (2021) Evidence, influence and reaching policy targets in health-care policy: prerequisites for solving headache. J Headache Pain 22 (in press)
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Steiner, T., Tinelli, M. Editorial. Valuing headache’s solution. J Headache Pain 22, 54 (2021). https://doi.org/10.1186/s10194-021-01246-2
- Structured headache services
- Economic analysis
- Value of treatment
- Health policy
- Global Campaign against Headache