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logoFocus on the person A guide to supporting people with migraine
Through the eyes of the patient. Recognising the different needs, preferences and treatment goals of individuals with migraine

All patient quotes are fictional, used to represent possible individual patient experiences. Not all patients will have the same experience.

"I try to be strong for my family, but there are days when all I can do is hide under the covers until it subsides. I just want to be present for my daughter, and be able to pick her up from school and play with her, rather than relying on other people."

Migraine is a variable condition that affects individuals differently, even the same individual in different ways at different times. As such, management approaches which are personalised for a given patient and a shared approach to decision-making may give the best chance of success.1
HESITANCY IN CONSULTING AND DELAYS TO DIAGNOSIS2,3
  • Many patients do not present to GPs, at least initially.2,4 73% of people from a black, Asian or ethnic minority background waited over a year from first experiencing symptoms before going to the GP2
  • Many patients have faced stigma or trivialisation of their condition, which can be a barrier to seeking help2,3
  • Some patients face a long delay to accurate diagnosis. 29% of people (41% in black, Asian and ethnic minority groups) with migraine in the UK required five or more consultations before diagnosis2

"People at work would tell me to sleep more, stop drinking coffee or take ibuprofen. My boss expected me just to get on with things. So I didn’t go to the doctor - until things got much worse."

NICE recommends that during discussions with a patient with a headache disorder, the clinician should offer "recognition that headache is a valid medical disorder that can have a significant impact on the person and their family or carers."5

UNDERSTANDING PATIENT TREATMENT GOALSThe British Association for the Study of Headache (BASH) states that for the management of migraine "the shared objective [of patient and clinician] should be control of symptoms so that the effect of the illness on a patient's life and lifestyle is the least it can be".1Managing migraine requires a flexible and individualised approach, in order to find the treatment that suits each patient best.1 Shared decision-making should be used to make collaborative choices regarding treatment options, according to an individual’s circumstances, goals, values and beliefs.6

Seeing migraine treatment through the patient's eyes

Understand how migraine impacts the individual7,8

Including the effects on functional disability, lifestyle and work/ education, as well as the frequency and severity of attacks and most bothersome symptom(s)

Understand the patient’s treatment goals1,9

Is it pain freedom? Faster recovery? The ability to continue with activities during the migraine attack?

Understand the patient's treatment preferences10-12

Not just based on response and side effects, but also:
Do they have a high pill burden? Is nausea making oral tablets hard to take? Are they confident with self-injection?

Treatment preferences

In a meta-analysis of 21 studies, the following treatment preferences were identified for patients with migraine:13

Acute treatment

  • Patients preferred treatments with a fast onset of action, a long duration of action and few adverse events
  • Important outcomes included rapid and complete pain relief, ability to return to normal activities, and no recurrence of migraine

Preventive treatment

  • Efficacy (reduction in frequency of migraine) was most important to patients, both in preference to avoiding adverse events and if it would require taking more than one therapy
  • Patients in general preferred fewer adverse events, less frequent dosing regimens and greater convenience

"I was having fewer migraines but they were still debilitating, and I felt awful for days afterwards. I was afraid my GP might only focus on the number of migraines I was having but thankfully she asked me about how I was coping and whether I felt the meds worked, and we decided together to try a different option."

CLINICAL CARE PATHWAYSProvision of care is varied across the country2

Some patients may experience:2

  • delays in diagnosis
  • long waiting times
  • inappropriate treatment plans
  • lack of access to specialist clinics and/or specialist nurses
  • lack of access to specific treatments

 

The RightCare: Headache and Migraine Toolkit suggests improvements that can be made to the provision of headache/ migraine care, focusing on four domains:6

  • correct identification and diagnosis of headache disorders
  • making appropriate referrals to secondary care
  • supporting patients to self-manage their condition after diagnosis
  • long-term management of patients in primary or community care
Access toolkit 
A LONGER-TERM VIEW: IDENTIFYING CHANGES

Diaries and symptom tracking

Migraine occurrence and symptoms may fluctuate with time; being aware of triggers, contributing factors, lifestyle and life changes (eg age, pregnancy or menopause) may help with identifying and managing these fluctuations.1,14  Patients can use headache diaries or symptom tracking apps to give a longer-term view of their disease.15,16
Clinical assessment of disabilityThe MIDAS (Migraine Disability Assessment) questionnaire is a tool for measuring the functional impact of migraine during attacks, and MIBS, the Migraine Interictal Burden Scale, assesses migraine-related burden between attacks. Both are short, self-administered questionnaires commonly used within clinical practice, which, if used regularly, may indicate changes in functional disability due to migraine over time.17

References

British Association for the Study of Headache. Guidelines for all healthcare professionals in the diagnosis and management of migraine, tension-type headache, cluster headache, medication-overuse headache, September 2010. Available at: bash.org.uk. Accessed September 2022The Migraine Trust. State of the migraine nation. Dismissed for too long, 2021. Available at: migrainetrust.org. Accessed September 2022Shapiro R E, Nicholson R A et al. Reasons for hesitating to consult for migraine care: results of the OVERCOME (US) study. Presented at the 63rd American Headache Society annual meeting, virtual, 3-6 July 2021Katsarava Z, Mania M et al. Poor medical care for people with migraine in Europe - evidence from the Eurolight study.
J Headache Pain 2018;19(1):10
National Institute for Health and Care Excellence (NICE). Clinical guideline 150. Headaches in over 12s: diagnosis and management, September 2012 (last updated December 2021). Available at: nice.org.uk. Accessed September 2022NHS RightCare. Headache and migraine toolkit optimising a headache and migraine system, December 2019. Available at: england.nhs.uk. Accessed September 2022Buse D C, Fanning K M et al. Life with migraine: effects on relationships, career, and finances from the Chronic Migraine Epidemiology and Outcomes (CaMEO) study. Headache 2019;59(8):1286-1299Buse D C, Yugrakh M S et al. Burden of illness among people with migraine and ≥ 4 monthly headache days while using acute and/or preventive prescription medications for migraine. J Manag Care Spec Pharm 2020;26(10):1334-1343Lipton R B, Hamelsky S W, Dayno J M. What do patients with migraine want from acute migraine treatment? Headache 2002;42 Suppl 1:3-9Farrell B, French Merkley V, Ingar N. Reducing pill burden and helping with medication awareness to improve adherence. Can Pharm J (Ott) 2013;146(5):262-269Seo J, Smith C A et al. Patient perspectives and experiences of preventive treatments and self-injectable devices for migraine: a focus group study. Patient 2022;15(1):93-108Gendolla A. Part I: what do patients really need and want from migraine treatment? Curr Med Res Opin 2005;21 Suppl 3:S3-7Xu X, Ji Q, Shen M. Patient preferences and values in decision making for migraines: a systematic literature review. Pain Res Manag 2021;2021:9919773Serrano D, Lipton R B et al. Fluctuations in episodic and chronic migraine status over the course of 1 year: implications for diagnosis, treatment and clinical trial design. J Headache Pain 2017;18(1):101The Migraine Trust. Keeping a headache diary. Available at: migrainetrust.org. Accessed September 2022Noutsios C D, Boisvert-Plante V et al. Telemedicine applications for the evaluation of patients with non-acute headache: a narrative review. J Pain Res 2021;14:1533-1542Buse D C, Rupnow M F, Lipton R B. Assessing and managing all aspects of migraine: migraine attacks, migraine-related functional impairment, common comorbidities, and quality of life. Mayo Clin Proc 2009;84(5):422-435
PP-NNT-GBR-0093. November 2022
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