What do people with migraine want?
The burden of migraine is increasingly being recognized 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 people’s lives?
See also The Impact of Migraine
Research into the burden of migraine has highlighted many fundamental areas where migraine affects people’s lives, including:
- Relationships with family and friends5
- Work/school productivity7,8
- Socializing and activities7
- Fear of future attacks7
- Medication overuse9,10
- Sleep disturbance11,12
- Other health issues, especially mental health such as depression and anxiety13–19
- 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 patients want9,20,21
The Vancouver Declaration on Global Headache Patient Advocacy, published in June 2018,21 was the result of the first Global Patient Advocacy Summit, convened in Vancouver, Canada, in September 2017. The meeting, which was organized by the International Headache Society, brought together patient leaders, patient advocacy organizations, leading health, neurological, and pain organizations, 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:21
- The importance of understanding and promoting the interests of people 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, standardized collection of data on consultation, diagnosis, treatment of headache, and patient-reported outcomes (including quality of life and satisfaction with treatment)
Recognizing and responding to patients’ needs
See also Talking to Your Patients
Every person 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.9,20
Tools are available such as MIDAS (Migraine Disability Assessment), HIT-6 (6-item Headache Impact Test) and MSQoL (Migraine-Specific Quality of Life questionnaire) 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 headache.
- GBD 2016 Disease and Injury Incidence and Prevalence Collaborators. Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet 2017;390:1211–1259.
- Payne KA, Varon SF, Kawata AK, et al. The International Burden of Migraine Study (IBMS): study design, methodology, and baseline cohort characteristics. Cephalalgia 2011;31:1116–1130.
- Blumenfeld AM, Bloudek LM, Becker WJ, et al. Patterns of use and reasons for discontinuation of prophylactic medications for episodic migraine and chronic migraine: results from the second International Burden of Migraine Study (IBMS-II). Headache 2013;53:644–655.
- Adams AM, Serrano D, Buse DC, et al. The impact of chronic migraine: the Chronic Migraine Epidemiology and Outcomes (CaMEO) study methods and baseline results. Cephalalgia 2015;35:563–578.
- Buse DC, Scher AI, Dodick DW, et al. Impact of migraine on the family: perspectives of people with migraine and their spouse/domestic partner in the CaMEO study. Mayo Clin Proc 2016;epub ahead of print.
- Andrée C, Vaillant M, Barre J, et al. Development and validation of the EUROLIGHT questionnaire to evaluate the burden of primary headache disorders in Europe. Cephalalgia 2010;30:1082–1100.
- Steiner TJ, Stovner LJ, Katsarava Z, et al. The impact of headache in Europe: principal results of the Eurolight project. J Headache Pain 2014;15:31.
- Sokolovic E, Riederer F, Szucs T, Agosti R, Sándor PS. Self-reported headache among the employees of a Swiss university hospital: prevalence, disability, current treatment, and economic impact. J Headache Pain 2013;14:29.
- Dekker F, Knuistingh Neven A, Andriesse B, et al. Prophylactic treatment of migraine; the patient’s view, a qualitative study. BMC Fam Pract 2012;13:13.
- Raggi A, Leonardi M, Giovannetti AM, et al. A 14-month study of change in disability and mood state in patients with chronic migraine associated to medication overuse. Neurol Sci 2013;34:139–140.
- Fernández-de-las-Peñas C, Fernández-Muñoz JJ, Palacios-Ceña M, Parás-Bravo P, Cigarán-Méndez M, Navarro-Pardo E. Sleep disturbances in tension-type headache and migraine. Ther Adv Neurol Disord 2017;11.
- Barone DA, Chokroverty S. Neurologic diseases and sleep. Sleep Med Clin 2017;12:73–85.
- Wang S-J, Chen P-K, Fuh J-L. Comorbidities of migraine. Front Neurol 2010;1.
- Arita JH, Lin J, Pinho RS, et al. Adolescents with chronic migraine commonly exhibit depressive symptoms. Acta Neurol Belg 2013;113:61–65.
- Raggi A, Covelli V, Schiavolin S, et al. Psychosocial difficulties in patients with episodic migraine: a cross-sectional study. Neurol Sci 2016;37:1979–1986.
- Zebenholzer K, Lechner A, Broessner G, et al. Impact of depression and anxiety on burden and management of episodic and chronic headaches – a cross-sectional multicentre study in eight Austrian headache centres. J Headache Pain 2016;17.
- Fornaro M, De Berardis D, De Pasquale C, et al. Prevalence and clinical features associated to bipolar disorder-migraine comorbidity: a systematic review. Compr Psychiatry 2015;56:1–16.
- Sacco S, Kurth T. Migraine and the risk for stroke and cardiovascular disease. Curr Cardiol Rep 2014;16:524.
- Doulberis M, Saleh C, Beyenburg S. Is there an association between migraine and gastrointestinal disorders? J Clin Neurol 2017;13:215–226.
- Gonzalez JM, Johnson FR, Runken MC, Poulos CM. Evaluating migraineurs’ preferences for migraine treatment outcomes using a choice experiment. Headache 2013;53:1635–1650.
- Dodick D, Edvinsson L, Makino T, et al. Vancouver Declaration on Global Headache Patient Advocacy 2018. Cephalalgia 2018;epub ahead of print.