Five main categories of themes emerged from the focus group meetings.
1) Previous steps taken to prevent migraine
With regard to preventive measures, many participants were concerned that migraine was not well understood, and some found it hard to rely on prophylactic therapy because the mechanism was still unclear to them.
Almost all patients had experimented with behavioural, lifestyle or dietary actions, mostly without success and later therefore abandoned. However, some patients continued with these behaviours, even when they believed that they probably provided no benefit. Many participants avoided certain foods and other types of products. Some used specific products in order to promote their health.
'Stabilizing the biological clock', i.e., developing a stable day-night rhythm, was a widely used precaution by more than half of participants. Interventions were often supported by their physicians. For some patients, prophylaxis was the last resort.
"I 'did' the whole alternative circuit. I tried everything. Only after all that was I ready for prophylaxis." (Group 1, PT 1)
Many types of complementary medicines had been or were being used. Most patients believed that although prophylactic treatment is only moderately effective, it is still more effective than complementary therapies. Using a complementary therapy often hampered patients from considering prophylaxis; they were waiting for the effects of the complementary interventions. Once complementary therapies had failed, they were more willing to try regular therapies.
"In the beginning, when my migraines were first diagnosed, we tried everything and every therapy to treat the attacks. Later on, I stopped making appointments for my migraines, I was so disappointed ... and I tried everything myself, avoided all kinds of food, gulped down vitamins and other supplements, relaxation therapies, etc., etc." (Group 3, PT 5)
2) Satisfaction with current migraine treatment
Migraine patients differed in how they determined whether or not they were satisfied with their treatment. Some patients were satisfied when they were able to keep on functioning at work or at home, others were only satisfied when the headache disappeared.
A few participants kept a highly structured diary to ascertain whether there were any factors that influenced their migraine. Keeping a diary made patients more accessible to prophylactic medication.
"My GP gave a kind of brochure; later on I continued keeping record of my headaches. I think that's very important; noting parallel things, food and so, looking back whether medication works." (Group 1, PT 1)
According to the patients, preventing the overuse of attack treatment was only occasionally considered by the GP. According to the patients, almost no GP used that argument in the discussion about whether or not to start preventive treatment. Remarkably, some patients who used excessive attack treatment mistakenly called it 'prevention'. In their incorrect but exemplary way of thinking, they considered it to be prophylaxis because they used the attack treatment before a migraine attack occurred. Some patients showed very limited awareness about the risks of overuse of attack treatment.
"I already take so many medications, so don't do that preventive thing to me. When I feel a headache coming, I just take a tablet and that's prevention to me." (Group 2, PT 3)
Most patients agreed that effective migraine treatment consists of effective attack management in addition to effective prophylaxis. More than half of the patients wanted to reduce the use of attack treatment, because they felt they were using too many triptans or painkillers. However, patients still focused on the importance of attack treatment; prophylaxis took second place. This focus on attack treatment hampered their thinking about other strategies to reduce the burden of migraine.
"I'm afraid of the side-effects of triptans; that's making me more open to prophylaxis." (Group 1, PT 5)
The feeling of being in control of the migraine and not being controlled by it was considered a very important factor. Participants accepted a high frequency of migraine and/or long-lasting attacks as arguments for prophylaxis. However, the vast majority believed that if the attack treatment was extremely effective, there would be no need for prophylaxis. This was irrespective of the number of attacks and was in relation to what patients found 'normal' for them.
"I'm not stuffing my body with medication when I have an attack 3 times a month, even if it is terribly intense, but when it's good treatable." (Group 2, PT 7)
3) Taking the initiative for prophylaxis
Although not every patient had personal experience with migraine prophylaxis, almost everyone knew about its existence. Most patients received information from family members, physicians, the Internet, the media or pharmacists. Many participants had searched the Internet for specific information on prophylaxis and encountered both positive and negative information such as stories of patients who have had a lot to benefit from prophylaxis and others who had no good effect and suffered from significant side effects.
"I'm using preventive therapy now. I didn't hear anything about it from the doctor ... I found out myself that something like that was available. It was in a women's magazine, not via the GP. I'm unhappy about that..."(Group 3, PT 7)
Testimonies of other patients or information of a patient headache association was not clear enough or too ambiguous to make a first step. It did not have a direct influence on their own health-seeking behaviour.
"Anti-epileptics, that sounds dreadful. The sort of thing you associate with lying on the ground with foam around your mouth." (Group 2, PT 3)
There was no consensus as to who should take the initiative for prophylaxis. About half of the patients expected an active approach from their GP. Others (more urban and/or more highly educated) preferred to take the initiative themselves. All patients expected that their GP should be able to discuss the advantages and disadvantages of prophylaxis.
Patients found it important that discussion about prophylaxis should take place at the appropriate moment. This was not necessarily at the initial diagnosis, but when the patient knew more about the impact of migraine and the effectiveness of attack treatment. The need for prophylaxis could then be considered within a more realistic context.
"I never wanted it; I'm not a pill swallower. But I find it terrible to have to call my colleagues that I have another attack again. Then they stare at me with negatively loaden, piercing eyes. And I have started to think differently about daily treatment." (Group 2, PT 6)
Prophylaxis was often discussed when patients indicated they were no longer able to cope with the headache attacks.
"My migraines were so severe that I went to the doctor ... I couldn't do anything but cry. He tried to comfort me and offered prophylaxis." (Group 3, PT 4)
For a few participants, the initiative for prophylaxis was taken by the GP based on the amount of prescribed attack medication; these GPs actively monitored the use of triptans and painkillers. When confronted with such an active approach, the patients were initially cautious but subsequently regarded the GP's intervention as positive. Ultimately, almost all patients desired to have their own control over the final decision.
"Sometimes I'm afraid he'll phone again ... because I take too much medication. I once phoned for a repeat prescription, but the doctor called back and said: You've used too much this month. Then he mentioned preventive therapy. It feels OK, that he's concerned about me." (Group 1, PT 5)
4) Assessing the advantages and disadvantages of prophylaxis
From the patient's perspective, the decision to start prophylaxis is complex. There is a wide range of perceived advantages and disadvantages, migraine patterns often vary, and the underlying concerns also differ.
"The pattern of attacks of my migraine is too weird to be able to figure out whether prophylaxis will help me or not." (Group 3, PT 2)
"Accepting prophylaxis is difficult, because my attacks sometimes stay away for a long time. It's sometimes months before I have another attack, but once they start they're very frequent." (Group 3, PT 3)
"I'm now using so many triptans ... this can't be a good thing." (Group 3, PT 2)
"I just don't want to do it. I'm very anti-drugs." (Group 3, PT 1)
When considering prophylaxis, all patients experienced negative or obstructive elements, as well as positive factors. Participants had differing views on this subject, some mainly emphasised the positive aspects and others mainly the negative aspects.
The most important negative factors were the fear of side-effects, the assumption that prophylaxis will have little impact, and the feeling of becoming a chronic patient. The issue of 'becoming a chronic patient' was expressed in all sessions, and about 50% of the patients associated the use of prophylactic drugs with 'old age' and 'chronic disease'. Participants emphasised that they did not feel like a 'patient' in between the migraine attacks, so it did not feel appropriate to use medication on a daily basis. Despite a high impact of migraine and although many (daily) preventive measures and behavioural adaptations has been adopted, the use of prophylactic drugs was not easily accepted.
More than half of the patients stated that daily use of tablets for migraine would make them feel emotionally unhealthier. Other negative factors included the fear of drug dependency, a low assessment of their own capacity for compliance, and the negative reactions of persons in their direct surroundings.
"If I were to take tablets every day, I'd feel like I'm a patient. Now I just have a headache sometimes ... actually it's many times." (Group 3, PT 3)
"I think I'd forget it (medication) so often that it wouldn't be effective." (Group 3, PT 7)
"I'm afraid of becoming dependent on those drugs." (Group 3, PT 2)
"It's something in the head about not wanting to take tablets every day." (Group 2, PT 4)
"When you receive preventive therapy for something, people think you're a pitiful case." (Group 2, PT 6)
"The question is: how does migraine affect your life. I don't want migraine to affect my life, and taking drugs every day would have a major effect on my life." (Group 1, PT 6)
The factors that contribute to positive decision appear to rest on a more calculated way of thinking or approach; weighing the advantages against the disadvantages and assessment of the degree of effectiveness.
Half of the participants had benefited from prophylaxis. The main positive benefits were a reduction in the burden of migraine with an increase in the range of abilities; this was particularly important when the impact was high. Other positive features were the ease of administration, an overall general gain in health, a reduction in acute medication, less confrontations with the GP in case acute medication was used excessively, and less pressure from others close to them. When the benefits were clearer, patients were able to accept prophylaxis or were at least willing to try it. Most of the patients stated they would accept daily drug intake if their migraine frequency would be halved.
"I don't care what I have to do; I'd do anything to get rid of my headaches." (GR 2, PT 4)
"If it worked for 100%, I would certainly join the users!" (Group 3, PT 3)
"With prophylactic drugs you're able to participate much more in sport activities - which I enjoy very much." (Group 1, PT 4)
"If somebody said to me: "The migraines will disappear if I cut off your hand", then I'd say: Cut off my whole arm!" (Group 3, PT 3)
Many patients anticipated reimbursement problems with the healthcare insurance companies when receiving prophylactic therapy (in fact, in the Netherlands, all costs of prophylactic therapies are fully covered by healthcare insurance for all patients). Patients who had experience with prophylaxis reported that they had no problems with health insurance or the financial side of treatment costs.
Apart from the duration of the attack another important factor was the situation involved, e.g. being at school, at work, or with friends or family. For similar attack rates the perceived need for prophylaxis differed between patients.
Not being able to take care of others was a strong positive factor for prophylaxis. Apart from the impact of migraine on themselves also the impact on other persons for whom they are responsible (e.g. children, family members, colleagues, etc.) was an important argument for preventive treatment.
"I can't even make it to the meetings of my sports club. I might manage it once, but the second, third and fourth time they wouldn't understand. When you feel that negative impact from migraine, then you really want to start thinking about preventive treatment." (Group 3, PT 4)
5) The relationship with the physician and the feeling to be heard
At the time of diagnosis, being taken seriously about the burden of the migraine and acknowledgement of their suffering was considered most important. But this was not the appropriate time when patients were interested in prevention. Many migraine patients felt there was a limit to the extent to which their physician is able to comprehend the burden they bear. They considered that their GP unable to imagine how difficult it is to experience a migraine attack, whereas others mentioned a sympathetic response from their GP. Patients indicated that at a later stage a good empathetic relationship with the doctor was important for the acceptance of prevention.
"He (GP) was really concerned about me, about the enormous number of attacks I had. That was good and very considerate of him." (Group 1, PT 4)
"I think that he (GP) thinks: what on earth can I do for you anyway..." (Group 2, PT 2)
"I found that now something really has to be done ... so I went to the doctor. He said: It sounds like classic migraine; we'll see what we can do. I should have done this much earlier ... at last I felt that someone understood." (Group 1, PT 2)
"There's always that fear of the next attack, and my family doctor seemed to understand that fear. First and foremost, you have to be taken seriously by your doctor." (Group 1, PT 1)
An important influence was the way their GPs treated them. Positive factors in promoting prevention were having a positive interaction and the feeling being taken seriously. On the other hand, being dissatisfied about the approach of the physician hampered the willingness to consider prophylaxis.
"Primarily I want to be taken seriously, but I can not complain. He's handled it well, with the start of preventive treatment." (Goup1 PT 5)
"If you have more than two attacks a month, they just give you a prescription for anti-epileptics and - before you know it - you're outside again." (Group 3, PT 6)