Abstract
The impact of migraine on quality of life has been traditionally evaluated by quantitative analysis, but diverse aspects remain insufficiently assessed, so a complementary qualitative approach may have advantages. The aim of this study was to assess the impact of migraine on the quality of life of migraineurs through the perception of patients and their relatives, and healthcare professionals. Qualitative methods were used, including six focus groups and nine personal interviews with 33 migraine patients under physician-directed treatment, five self-medicated patients, five relatives of migraine patients and seven healthcare professionals. Migraine has a negative affect on the quality of life, including physical, emotional and social aspects of daily life such as family, work and social relationships. Family environment and psychological well-being of patients were the aspects most affected according to patients and relatives. Health professionals emphasized work impairment and focused on pharmacological management and on the need for adequate information about migraine for non-medicated patients and patients' relatives. Qualitative methods, such as focus groups and interviews, are a valuable resource for assessing quality of life and well-being of migraine patients. These techniques open up new areas for further research.
Introduction
Migraine is a common, incapacitating disorder that interferes with daily life activities, undermining severely the quality of life of the sufferer (1). Quality of life has been defined as the ability of an individual to play a role in society and to enjoy fully their role as a citizen, with an independent social status (2). Its assessment basically relies on questionnaires which are generic or specific to a particular illness. Regarding migraine, different studies have employed generic questionnaires such as the SF-36 (3–5) or the Nottingham Health Profile (6), while others have employed specific questionnaires mainly designed to evaluate migraine-associated symptoms and therapy-related issues. The latter include the Migraine-Specific Quality of Life Questionnaire (7–9), the UK migraine patient survey (10) and the headache needs assessment (HANA) survey (11).
However, due to the subjective nature of quality-of-life assessment, diverse important aspects remain undetected by these questionnaires and a qualitative approach may further develop and enrich their evaluation. Qualitative methodologies aim to explore and understand situations, interpret phenomena and develop concepts in their natural context, with emphasis on meaning, significance and opinions of those taking part (12). These techniques focus more on subjective aspects and personal experiences of routine and problematic moments and meanings in individual lives, and are therefore based on a relatively small number of individuals, selected according to specific criteria (13). Among the qualitative techniques, focus groups and individual interviews seem more suitable in this setting and were chosen for this study (14). Groups are designed to obtain information on a predefined area of interest, in a non-directive, permissive atmosphere so that participants express their subjective experiences and opinions (15). Discussion is relaxed and comfortable, since participants convey their ideas and feelings to a group of persons sharing a number of common characteristics. In those cases where the patient does not feel at ease sharing information with a group, personal interviews are indicated (12). Furthermore, the views of patients’ relatives and migraine-related health professionals are not usually considered in classical studies, but may be of great interest, as is the opinion of those migraineurs that do not usually seek medical advice but self-medicate instead; qualitative analysis represents the ideal approach to gain knowledge in this respect.
The aim of this study was to identify, by applying these qualitative techniques, those areas of the quality of life of migraineurs that are most affected by their disease, as well as its impact on different aspects of the daily life of the sufferers. To gauge more accurately the dimensions of the problem, we evaluated not only migraineurs with conventional therapy, but their relatives, self-treated patients and health professionals involved in their management.
Patients and methods
This qualitative descriptive study was based on six focus groups and nine individual interviews, and was conducted between March and June 2001.
Group composition
Four of the six focus groups were made up of migraineurs who met the International Headache Society criteria for migraine with or without aura. Three of these groups consisted of adult patients treated in the Department of Neurology of our hospital, which serves as the only reference health centre that provides neurological care to a community of approximately 300 000 inhabitants. These patients had been referred by their primary physicians for migraine prophylaxis and were randomly selected by their own neurologists – who informed them about the aim of the study – according to the sole selection criteria of diagnosis and their willingness to participate. They all met the usually accepted criteria for migraine prophylaxis, i.e. more than two crisis per month, of moderate or severe intensity. Refractory patients, those with transformed migraine or patients particularly difficult to treat were not included; in this sense, the groups included could be considered representative of the general population of migraineurs with common headaches. They were on prophylaxis with nadolol (70% of patients), amitriptyline (20%) or flunarizine (10%).
Another group consisted of self-medicated persons, i.e. individuals who acquired over-the-counter drugs for migraine directly from pharmacies but who were not being treated by a doctor. To this end, several pharmacists were contacted by our research team and received specific training on migraine diagnosis and therapy by one of us (J.C.G.-M.) in order to select patients appropriately. All the individuals gave their consent to participate in the study.
The fifth group included healthcare professionals (nurses and physicians) with experience in caring for patients with headaches at our institution. The last group included relatives of patients with migraine. To recruit them, the patients in the study were asked for permission to contact a relative. Once permission had been obtained, relatives were contacted. All participants gave their written consent to participate. No economic incentive was offered.
Focus group and interview dynamics
Two psychologists with specific training on this technique led the focus groups. One of them (the chairperson) presided over the group while the other (assistant) took notes of the information gathered during the meeting, including not only words but the context, which included the moment of the comment, intensity, emotional atmosphere, the vagueness of the responses, basic ideas, contradictions, changes of mind and anecdotes that were related during the session; this was extremely helpful during the analysis. The entire group sessions and interviews took place in a meeting room of our hospital, away from the Neurology Department. Group sessions lasted 90 min and interviews 30 min. None of the participants knew the people who conducted the groups and the interviews. At the beginning of each meeting, explanations about the study and its confidentiality were again provided and permission was requested to audiotape the sessions. A script for each group prior to the meeting, with the quality of life aspects liable to exploration, was established and used by the chairperson in order to bring the conversation back to the main topic when participants drifted off into unrelated topics. The group structure was the same for all groups of patients: they were asked to speak freely about those aspects of their daily lives that were affected by migraines and how they impacted on their quality of life. The chairperson explained that quality of life included physical, psychological and social aspects, and that all of them were relevant to the study. The group of family members and professional healthcare workers were asked to discuss only one question: What aspects of the life of your family member or the patient are most affected by migraines?
Data analysis
Analysis of the data was carried out following the method described by Krueger (15): the researcher offers brief descriptions based on direct data followed by illustrative examples. The chairperson and the assistant made an initial summary of each session based on their observations and on the comments collected by the assistant during the sessions. The summary was drafted after each session and before the next focus group, in order to ensure the quality of the analysis, thus helping with the initial codification steps of the analysis to identify the main ideas reached in each group.
Once all the focus groups had met, the summaries of the sessions, notes and transcriptions were read and the tapes were listened to by the researcher responsible for the data analysis in order to organize data into initial codes and then into higher codes that provided insight into identified themes. In those cases where literal transcription raised doubts about the meaning of some comments, the recordings were listened to again for clarification. Given the fact that the concept of quality of life is a multidimensional concept covering many aspects of the individual, we dealt with those aspects that best defined the concept of a health-related quality of life. With this aim, we carried out an analysis focused upon the symptomatic, social and emotional aspects of patients and on the way these aspects are affected by migraine, describing the most important results gathered from patients, their relatives and healthcare professionals.
All the main issues raised in each group as well as the divergences between the different groups were analysed so as to identify the main ideas of groups and interviews. We then analysed the coincidences and divergences between the identified areas and the opinions expressed in the groups and interviews. Finally, a comparison was made among the results obtained in the different groups of patients, the group of family members and professionals. This analysis was carried out by the chairperson and checked by the assistant. Once all data were analysed, the report and conclusions were read and approved by consensus of the research team.
Results
Table 1 illustrates the characteristics of the different focus groups. Two individuals from the groups treated at hospital and four from those self-medicated, refused to participate, the first due to inability to attend the meetings due to their timing interfering with their jobs, whereas the latter gave no explanation.
Characteristics of focus groups
Symptomatic aspects
Regarding the influence on physical health as well as the functional limitations that migraines impose on the patients, their remarks focused mainly on the intensity of pain and the discomfort caused by noise and light during acute attacks. They mostly described how pain and discomfort made sleep impossible, caused severe bodily pain, tiredness, sweating, and lack of memory.
‘And your eyes begin to close because your whole body hurts, and you feel pain when there is any kind of noise, light, anything at all …’
‘And when the pain is very, very severe, there are times when I can’t get to sleep because of the pain.’
‘And the effect on my memory? I don’t have any memory at all. I don’t know whether that is due to the headaches, the pills or everything I am taking, but I don’t remember anything.’
‘I feel awful, tired. The pain is excruciating, unbearable; I can’t cough or bend down to pick something up, because I get such a pain …’
For their part, family members spoke of their inability to imagine the intensity of the pain and their impotence at seeing their family member suffering so much during a severe attack and not being able to help. They also considered it relevant to make the observation of how, on many occasions, they took an excessive medication to control pain.
‘There are times during a strong attack, when the light hurts, when everything hurts, that you say “Wow, this is a strong attack”, and she ends up by taking the strongest medicine and looking for something else to take, because she has to take something.’
‘And that is the biggest problem – not being able to do anything, to see her being sick all the time, looking for pills. and you say to her “When did you take the last pill?”“Two hours ago”, “and you’re taking another one?”“It's not going away”. That is the biggest problem.’
Healthcare professionals drew attention to the fact that sufferers considered migraine as something inevitable and spoke of resignation on the patients’ part. They were also in agreement with family members on the fact that patients controlled and regulated their medication, often with a total lack of knowledge.
‘Migraineurs are long-sufferers and are very consistent in that it is a life-long problem: “My mother got used to …” I think there is a misconceived idea about all this and I believe that people get used to living with the problem and therefore to putting up with it. I consider this to be an important issue, because they take medicines without adequate control and we end up by handling these patients badly.’
Self-medicated patients, especially, recognized that they were taking excessive amounts of drugs for their condition.
‘But when they take no notice of you, you resort to taking something to get rid of the pain, without thinking about the consequences. It's not good to take drugs like that, but as they bring relief, we take them and that's that.’
Social aspects
With regard to the social aspects, three different areas covering the patients’ social life are considered: (i) work and studies; (ii) life within the family and/or with a partner; and (iii) social relationships outside the family and working environment, including leisure and free-time activities.
Work and studies
One of the most frequently mentioned aspects was activity at work and studies. This aspect made reference to the difficulties in performing one's duties at work or to do this under unfavourable conditions with regard to physical and motivational aspects as well as personal faculties.
‘I was working in a bar and had to leave because when I had an attack I was very ill. I felt sick and I couldn’t stand to be there because everything bothered me: the noise, people talking to me, I was not myself …’
‘At school: you can’t study, you’re in class but you can’t concentrate, you’re reading but you can’t focus on what you’re reading … and then, if you get an attack, you go to bed and leave doing the exam to next year.’
These health-related limitations to the performance of their professional duties generate much unease and discomfort in patients; they refer to a great sense of frustration and impotence which, we consider, causes even more stress to migraine sufferers.
‘In the workplace: you can’t fulfill your real potential. Sometimes you can’t even go to work because you can’t get out of bed.’
‘And it is no use either being at work and telling your workmate not to bother you, because your head hurts. You can do that at home, but at work, with your boss, attending to the public, etc., you have to pretend that you are okay, and that is hard to do.’
Family members are also aware of the work-related difficulties caused by migraine and their negative effect on the family unit:
‘I think it is even worse because she wants to go on living normally, go to work and then it's worse for her at home.’
Professional healthcare workers are very aware of the negative impact of migraines in their patients’ workplaces, and it was in this area that they laid most emphasis when talking about disruptions in the quality of life of these patients. A neurologist expressed this in the following way:
‘Migraines affect especially young people who are working – basically women. The repercussions these have at a work level are astounding.’
They also emphasized the effect migraines have on housewives in the performance of their daily chores:
‘But it must be terrible for housewives who suffer from migraines to have to think about cleaning, the chores … because there are tasks that cannot be avoided such as taking the children to school. In my opinion that is a huge negative effect.’
There follows a description by a housewife of her life during a migraine attack:
‘… If I have a headache when I wake up, I get up and take my little girl to school. I come back, give myself an injection and go back to bed. Sometimes the headache comes back after four hours and I inject myself again. I call my husband who works in a bank and he fetches our daughter from school and I don’t do anything all day, it is my husband who takes care of our daughter, makes dinner, etc., and I don’t do anything because I am not up to it, I feel sick … very ill. and sometimes this lasts three days: I inject myself, I go to bed, I get up, and I try to eat a little. Sometimes, after four hours I have to go back to bed and give myself another injection, and so on.’
Family relationships
The difficulties which migraine imposes on family relationships were one of the central aspects discussed in all the groups of patients, and especially in relatives. This fact has a psychological effect on patients, as it influences their image as mothers/fathers, spouses, etc.
‘Relationships with the family: you are always in a bad mood and besides, you see that the way they look at you is being affected and that you are also affected by what they are having to undergo.’
‘In my case, for example, I was in pain every Sunday, and I realize that it must have been a nightmare for my husband.’
‘… in my house, my kids and my husband are all fed up with this situation because I can’t even go out anywhere because if I go to a bar I have to leave because I can’t stand the noise.’
‘Or if I go on holiday with the family and have to park the car and take my medicine, and see if there is a health centre nearby …’
One of the most frequent comments was the influence of their state of health and everything this involved on the emotional development of their children:
‘It affects my daughters a lot … they can’t count on their mother while the attack lasts.’
‘What I am having to put up with affects them (the children) at an emotional level, at a level of their emotional development.’
‘It hurts me to see how they get involved and how it hurts them, because sometimes when they have done some homework for school, they always talk about their mother and … my daughter cannot face up to the problem.’
The relationship difficulties described here were more evident in the group of relatives, who started the focus group by commenting that
‘When they have a headache, we have a headache too. I think that is the perfect definition. They have a problem and we have a problem.’
The family members said that they understood the situation of their family member, but at the same time, this inevitably made them angry and affected the children:
‘Married people of our age like to go out. Then you find yourself in this situation – it's hard, at least for me it's hard. Well, for me it's very hard and for her it's even worse, of course, because to make matters worse, she is the one who is suffering from the illness.’
‘It is a very severe case, you end up by getting angry with that and when you are at home, because you can’t understand it … and it happens over and over again.’
‘You get angry and very often you try to hide your anger. You say that you understand perfectly, you tell her she is not to blame, but we are annoyed when she gets another attack.’
Family members also commented that they considered that their children's development was affected, especially when they were young:
‘It is terrible to see my wife's face when she is crying because the kids are saying, “let's go somewhere” and she can’t. When that happens you feel awful, she can’t cope with it and how do you explain that to the children? How do you tell them that mummy's head hurts? Because they think, “Not again, it can’t be hurting again”. An older child understands, but the younger ones don’t. We adults are always affected in the same way, whenever it happens – it is not the same for them, it is much more difficult for them.’
The impact on the relationship between patients and their partners and specifically on their sexual relations was given superficial treatment, as this is a very delicate subject that affects couples at a very intimate level. There were only two comments that expressed the impact of migraine on this specific aspect of a couple's relationship. The first was made by a female patient and the second by the husband of another patient:
‘It has changed my life even in our sexual relations because since I began to have this pain I haven’t felt any kind of sexual arousal. I can’t have any sex life with my husband. I told him “forget about me”…’
‘Well yes, it has been a problem for me not having sexual relations and also all the fuss about this medicine and that … and I’ve been a whole year without any sex life.’
Healthcare professionals also talked about the repercussions of migraines on the life of family members. They did not make any comments about children as such, but they did mention the stress of caregivers and the effect on the relationship between patients and their spouses. From their point of view as professionals, they confirmed the lack of understanding of the disease among family members, and suggested that family members should also be adequately informed about migraine.
‘It would be interesting to explain this to the spouses as they show a lack of understanding about many things. You might also consider an intervention at a more social level in an attempt to dispel the cliché that migraine sufferers are fibbers. I don’t know – educational programs or brochures or trying to get through to them in terms that they will understand and make them feel better …’
‘Of course, because these family members can also suffer the stress of the caregiver …’
Social relationships
When commenting on the social relationships, many examples were given of how the social life of patients was affected by migraine. Patients made few references to the way they were affected when they went out with people from their social environment. They concentrated on the fact of having to decide whether or not to go out or take part in social events, in the fear of having a migraine attack away from home.
‘If I am invited to a wedding … I try to avoid it because I can’t go to that wedding … it affects me in every sense.’
‘At a personal level, I am also affected in my personal relationships, because there are times that I have to give up doing things I like doing, and that I had planned in advance, because I don’t feel well.’
‘… There have been cases of trips having to be postponed, instead of going out on a Friday we have waited till Saturday to see if I felt better, but I don’t like doing that … that kind of thing makes me feel very bad.’
‘I can’t have a meeting, a birthday party … a lot of people come to birthday parties … It makes life impossible.’
‘It's terrible to be on the beach and have to leave because my head hurts.’
‘… Because I didn’t dare go out of the house because I said “And if I have an attack?” I was always thinking “And if I have an attack a long way from home, what do I do?” I was always afraid about that.’
Below, we mention the weekend pain, which was extensively commented on by the group of patients. We have transcribed patients’ experiences concerning the pain they get during free time and leisure activities:
‘I have had to work up to 24 h without stopping and when I get a free day my head hurts because I have the day off; it's as if I give myself permission to have the headache.’
‘Ninety percent of the time it happens on a Saturday or Sunday. I don’t know if that is because I am having a good time or what …’
‘I spend the entire week working and I don’t know why, but when Friday comes I start to get a headache.’
Emotional aspects
The impact migraines have on patients at an emotional level is extremely relevant. They describe the effect on their emotional state as a great restriction on their life at all levels. It is important to highlight the tone of suffering and impotence with which they describe the way migraines affected them emotionally. They spoke of mood swings, unhappiness and hopelessness, and at moments of crisis, an increase in their aggressiveness and a greater lack of emotional control:
‘I end up by crying because of the pain and desperation.’
‘In every aspect, it has changed every aspect. My state of mind, I don’t feel like doing anything, I am desperate. My migraine has ruined my life.’
‘You get very sad, you have to do something and I can’t stand being in bed in the dark; I just don’t know what to do.’
‘What I think has happened to us is that we have lost faith in everything that we have tried.’
‘I get very angry when my head hurts, I can’t stand it.’
They consider that it is difficult for anyone who has not experienced the same thing to understand the situation in which they find themselves. Some of the comments expressed by patients are:
‘They don’t understand it. I think my husband began to understand the day he came home and found me lying on the floor.’
‘And then the people who haven’t experienced it … now I don’t say my head hurts, it seems they are laughing at you. Sometimes you don’t even mention it at home – why? They don’t accept it, those who don’t get headaches can’t understand.’
‘The others don’t understand because it is a sharp pain and if you haven’t experienced it you can’t imagine what it's like.’
Family members were in some cases aware of this situation perceived by patients and seemed to express this lack of personal knowledge of the type and intensity of the pain that can be felt with a migraine.
‘You are not aware, you imagine that it is worse than the one you have but only that. It must be terrible …’
‘It must be really terrible, terrible, but unless you experience it yourself …’
Another relevant aspect is the fear of patients and family members about having a brain haemorrhage or tumour. Professional healthcare workers are very aware of this fear:
‘Many patients with migraines or other kinds of cephalalgia always have a doubt at the back of their minds about whether they have something else, fear of a tumour or a haemorrhage.’
Family members also expressed their fear that patients might get something more than a migraine one day:
‘In the end, you get used to it and you say “Good, it will soon go away” but of course, “who says that it is not something far worse, and … ?” I didn’t do anything, I could have taken her to the hospital, no, there will be doctors who know more than you will and they will take care of her, won’t they?’
‘Then, who says that something won’t happen, that something won’t happen while you are sleeping?’
Discussion
This study describes the impact of migraine on patients’ quality of life using qualitative methodology, thus providing an exploratory and discovery orientated perspective and information complementary to that obtained on quantitative analyses. Our results reinforce the important impact on quality of life that migraine represents for patients and is therefore in agreement with previous, quantitative studies (16–18). A recent study also employed qualitative techniques, but focused on migraine-related problems with insurance and drug companies (19). In contrast, we have focused exclusively on patients’ quality of life, and have added for the first time the perspective of self-medicated patients, family relatives and the healthcare professionals. As focus groups and interviews showed, the effect of migraine is not limited to aspects related to physical health and medication, but includes emotional aspects involving family and social relationships (3).
When assessing the symptomatic aspects of migraine, patients focused on pain and other migraine-associated symptoms, while relatives and healthcare professionals considered pharmacological symptom relief more important.
Contrary to what we might have thought with regard to patients’ quality of life, there were no differences between the group of patients treated by a doctor and those who self-medicated; there were no significant differences in terms of migraine frequency or severity between these groups. Nor were there any differences among the groups treated at hospital, despite the fact that these groups displayed different frequencies in migraine attacks. In contrast, there was a notable difference in the way self-medicated patients recruited from pharmacies used pain killers and in the scanty information they had about their illness, which was based on a conviction that migraine is an inherited condition that has just to be put up with and that doctors were powerless to do anything. This constitutes a non-studied group of patients, very interesting for future studies in that they provide a lot of information about unclear and intriguing aspects of migraine, such as why they never consult a physician and about their misconceptions of migraine and misuse of medication.
Regarding social aspects, efficiency at work, studies or housekeeping duties were frequently mentioned as being severely undermined by migraine, an aspect that was also much discussed by healthcare professionals. However, both patients and relatives considered that family was the environment most affected by migraine, and believed that this aspect was even more important than migraine-associated symptoms or the inability to work. It is worth emphasizing the concern expressed by patients and their spouses about the emotional development of the children, an aspect that has not been sufficiently addressed in the literature (19, 20).
A major and significant finding of our study was that relatives spoke more about how they felt about their spouse's illness than about the actual effects of migraine on their relative, which was the initial objective of the session. This aspect could be identified due to the less directive nature of the group methodology, and the chairperson decided to continue exploring these new needs expressed by the migraine family members. This suggests that research should be broadened to encompass the extent to which relatives are affected by their partner's migraine and their needs, as has been done with other pathologies (21). Along these lines, this study also suggests that relatives lack adequate information about migraine, which results in poor understanding of the patient's condition and a certain degree of frustration. Specific programmes should be provided for the public to address this. This aspect has been studied largely with the same methodology for other diseases (22).
Loss of contact with friends and a variable degree of social isolation were also consequences mentioned by all the groups, and are factors which harm psychological well-being and increase the risk of depression. Several studies have assessed the relationship of migraine with psychiatric morbidity and depression (23, 24), but we were interested in making a broader appraisal of the emotional aspects in relation to migraine (25). All the groups pointed to major changes in the patient's mood, mainly in the form of high levels of sadness, aggressiveness, emotional instability and lack of understanding, which was also the main feeling described by Cottrell (19) when assessing patients’ social relationships. The information obtained from groups and interviews was similar, but although focus groups have the advantage of allowing the interaction of participants, they may also prevent certain persons from expressing their thoughts due to shyness, lack of privacy or other participants’ intimidation. To reduce this possibility, we carried out individual interviews, since occasionally the thoughts expressed in the group may not have been representative of all the group members, but of the more talkative or persuasive (14, 26,27). This was the case with questions concerning the impact of migraine on sexual relations, which were dealt with by a less inhibited relative, but were openly commented on by one patient in the individual interviews. We consider that this subject is of great interest, but it has not been thoroughly examined previously (28) or has been mainly related to treatment procedures (29).
A limitation, intrinsic to qualitative methodology, is the low level of control that researchers have over the group, which may cause them to dedicate time to irrelevant subjects, lose sight of the objectives, and complicate comparisons between information gathered from different groups (30). To address this, we established a script for each group prior to the meeting, with the quality of life aspects liable to exploration, which the chairperson used to bring the conversation back to the main topic when participants drifted off into unrelated topics. This problem was also avoided by using personal interviews, which allow the researcher to maintain more control over the topics for exploration. Also, information provided in the discussions may be influenced by the fact that patients who volunteer to participate are likely to have different views from those who do not participate in such groups due to lack of motivation. However, the rate of refusal to participate in this study was low.
Unlike classical quantitative studies of quality of life, qualitative studies such as this add information about the subjective experience of migraineurs, and the different feelings and perceptions of patients’ relatives and professional healthcare workers, which helps to enrich clinical practice, helping the professional to understand patients’ experiences and needs. This information is helpful during the first stages of the creation of assessment instruments directed to migraine patients and as a complement and validating tool for quantitative research (31).
In conclusion, this study shows that focus groups are a valuable resource for research into health-related matters, studying attitudes and experiences of patients, caregivers and health professionals. The use of this discovery-orientated methodology in the assessment of migraine patients not only allows an appraisal of the impact of migraine, but also opens up new areas for future research.
Footnotes
Acknowledgements
This research was supported in part by a grant from the Agency of Technology Evaluation of the Basque Government (Osteba). We thank the patients, their family members and pharmacy staff and healthcare professionals who participated in this study.