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Migraine - Life with Migraine

5 min

What do Patients with migraine want?

The burden of migraine is increasingly being recognised as a global problem, spurred on by the Global Burden of Disease survey1 and initiatives such as the Global Campaign Against Headache, the International Burden of Migraine Studies,2,3 the Chronic Migraine Epidemiology and Outcomes (CaMEO) study,4,5 and Eurolight6.

How does migraine affect patient’s lives? See also The Impact of Migraine

Research into the burden of migraine has highlighted many fundamental areas where migraine affects patients’s lives, including:

  • Relationships with family and friends5
  • Work/school productivity7,8
  • Socialising and activities7
  • Fear of future attacks7
  • Medication overuse9,10
  • Sleep disturbance11
  • Other health issues, especially mental health such as depression and anxiety12–18
  • Financial uncertainty5 

Meeting patients’ needs

As the recognition of migraine burden drives research into effective acute and preventive treatments, patients are becoming more vocal about what they want. 

What_do_people_with_migraine_want_figure 2(2).svg

Figure 1: What patients want 9,19,20

The Vancouver Declaration on Global Headache Patient Advocacy, published in June 2018,20 was the result of the first Global Patient Advocacy Summit, convened in Vancouver, Canada, in September 2017. The meeting, which was organised by the International Headache Society, brought together patient leaders, patient advocacy organisations, leading health, neurological, and pain organisations, healthcare professionals, pharmaceutical manufacturers, scientists, and regulatory agency representatives from around the world with the goal of understanding and advancing issues that are important to headache patients.

The key issues highlighted in the summit included:20

  • The importance of understanding and promoting the interests of patients with headache disorders and challenging the stigma associated with their condition
  • Reliable access to competent medical care for all patients affected by headache
  • Adequate training in headache medicine for all healthcare professionals
  • Global benchmarks for accurate diagnosis and evidence-based treatments
  • Routine, standardised collection of data on consultation, diagnosis, treatment of headache, and patient-reported outcomes (including quality of life and satisfaction with treatment)

Recognising and responding to patients’ needs

See also Talking to Your Patients

Every patient has a different experience of migraine; the impact on their daily lives and the trade-offs that they are willing to consider when discussing treatment options need to be individually assessed so that a tailored management plan can be developed.9,19

Tools are available  such as MIDAS (Migraine Disability Assessment)21, HIT-6 (6-item Headache Impact Test)22 and MSQoL  (Migraine-Specific Quality of Life questionnaire)23 to assess the level of disability and impact of migraine on quality of life. Regular use of such assessments can highlight the need to adjust treatment and perhaps introduce preventive therapies where a patient has begun to rely too much on acute medicines with diminishing impact on their headache24.

Find further information on optimising management of migraine in the NeurologyBytes Knowledge Hub, including considerations for treatment and preventive treatment.

References
  1. GBD 2016 Disease and Injury Incidence and Prevalence Collaborators. Lancet 2017;390:1211–1259.

  2. Payne KA et al.. Cephalalgia 2011; 31:1116–1130.

  3. Blumenfeld AM et al. Headache 2013;53:644–655.

  4. Adams AM, et al. Cephalalgia 2015; 35:563–578.

  5. Buse DC, , et al. Mayo Clin Proc 2016; 91(5): 596-611.

  6. Andrée C, et al. Cephalalgia 2010; 30:1082–1100.

  7. Steiner TJ et al.  J Headache Pain 2014; 15:31.

  8. Sokolovic E et al. . J Headache Pain 2013;14:29.

  9. Dekker F, et al.. BMC Fam Pract 2012; 13:13.

  10. Raggi A et al. Neurol Sci 2013; 34:139–140.

  11. Fernández-de-las-Peñas C et al... Ther Adv Neurol Disord 2017;11.

  12. Wang S-J, Chen P-K, Fuh J-L. Front Neurol 2010; 1.

  13. Arita JHet alActa Neurol Belg 2013; 113:61–65.

  14. Raggi A et al.. Neurol Sci 2016; 37:1979–1986.

  15. Zebenholzer K et al. . J Headache Pain 2016;17.

  16. Fornaro M et al.  Compr Psychiatry 2015; 56:1–16.

  17. Sacco S, Kurth T.  Curr Cardiol Rep 2014; 16:524.

  18. Doulberis M et al. J Clin Neurol 2017;13:215–226.

  19. Gonzalez JM et al.Headache 2013;53:1635–1650.

  20. Dodick D et al.  Cephalalgia 2018; 38(13): 1899-1909

  21. Migraine disability assessment (MIDAS) [internet]. [cited April 2020] Available from: https://migraine.com/pro/midas

  22. 6-Item Headache Impact Test questionnaire [internet]. [cited April 2020] Available from: http://www.bash.org.uk/wp-content/uploads/2012/07/English.pdf

  23. Migraine-specific quality of life (MSQoL) measure [internet]. [cited April 2020] Available from: http://www.galen-research.com/measures-database/

  24. Lipton RB, et al. Tools for diagnosing migraine and measuring its severity. Headache 2004;44:387-398