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Half of migraine sufferers not diagnosed for at least three years

By Dermot Garland - 30th Nov 2020

Starke Kopfschmerzen - Migräne - Medizinische Illustration - 3D Rendering

A new Irish survey carried out by Empathy Research has provided further insights into the negative impact that migraine causes for a significant proportion of sufferers. The results revealed that 46 per cent of people surveyed in Ireland said migraine impacts their overall health and wellbeing. Furthermore, the survey again demonstrates that migraine has an impact on almost every aspect of their lives, and it shows the significant burden on family and children.

The survey findings show the reality of life for people suffering with migraine in Ireland, including that the effects of migraine don’t necessarily stop when the attack subsides and that the impact of this condition extends beyond the person suffering with migraine. It also highlights the need for more work to be done to raise awareness of the impact of migraine on sufferers in Ireland, as migraine can be often misunderstood, with many sufferers hiding their condition from those around them.

Dr Martin Ruttledge, Consultant Neurologist, Beaumont hospital, said: “This survey supports previous work that migraine can be a very disabling neurological condition. It is therefore not surprising that migraine is ranked as the second-most disabling non-fatal medical condition by the WHO.

In this survey, almost two-thirds of migraine sufferers (65 per cent) reported a relatively significant negative impact on overall quality of life, rating it between 3/5 and 5/5 on a scale of 1-5, where 1/5 represents no impact, and 5/5 represents very significant impact. It is concerning that almost two-thirds of migraine sufferers feel that migraine is not taken seriously by Government or society.

“It is also worrying for me as a doctor that more than 50 per cent of patients reported that they did not receive a diagnosis for at least three years (or more) after their first symptoms. As hospital-based healthcare professionals, we are trying to improve this situation by seeing more new patients in our clinics in a timely fashion so that we can provide them with advice, treatment options and a more integrated or comprehensive approach to their care.”

One of the most revealing results from the survey was the effect that migraine has on a person’s family, and particularly on the lives of their children. Among parents, 40 per cent said that their children are impacted by their condition. The survey found:

  • 57 per cent of parents with migraine said that having migraine had an impact on their ability to provide unconditional parental support to their children.
  • 53 per cent said that their partner is most impacted by the disease.
  • 17 per cent of parents with migraine said their condition impacted the general happiness of their children.
  • It also highlighted the way in which migraine can shape daily life for those close to the migraineur, with four-in-10 of sufferers hiding a migraine attack.
  • 24 per cent said they hid a migraine for work/career reasons.
  • 22 per cent hid their migraine, as they didn’t want people to worry about them.

The survey data also found that migraine affected many areas of a patient’s life, specifically noting that:

  • 51 per cent of people with migraine are frustrated.
  • 30 per cent of people with migraine feel depressed and sad.
  • 24 per cent of people with migraine feel anxious.

The survey data also showed that migraine damaged people’s personal and social lives, with 52 per cent of respondents claiming it has prevented them from going out, 44 per cent saying the disease impacted their ability to exercise, 41 per cent of people saying their career has been impacted by migraine, and 25 per cent stating it had impacted their sex life.

The insights from 265 Irish migraine patients are broadly similar to those reported by patients in other European countries. Irish migraine patients reported feeling more exhausted (53 per cent Ireland vs 51 per cent in Europe), but the feeling of frustration (51 per cent Ireland vs 51 per cent in Europe) and guilt (15 per cent Ireland vs 14 per cent in Europe) remained broadly the same between both.

Sixty-five per cent of Irish patients living with migraine feel that their condition is not being taken seriously by Government or society. Just over half of all patients (52 per cent) claimed it took three or more years to be diagnosed after first experiencing symptoms, and a further 47 per cent had to wait another three years at least to get a specific treatment.

The survey was carried out by Empathy Research on behalf of Teva Pharmaceuticals.
Ms Kim Innes, General Manager of Teva UK and Ireland, commented: “The impact of migraine on patients and their families is huge, and I think migraine patients deserve better support and help in dealing with this incredibly serious condition.

“The results of the survey demonstrate there is still a long way to go in developing the right tools and support networks for people living with migraine. These insights from migraine patients are powerful and show the challenges ahead of us in making sure that migraine is taken seriously as a condition and that the appropriate treatments are made easily available for patients who need them.”

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