ABSTRACT
OBJECTIVE: This study’s purpose was to identify the areas that people find most difficult in living with migraines and, in that regard, what kinds of assistance would be most helpful to them and to other people who have migraine headaches.
STUDY DESIGN: Four focus groups, each consisting of 4 to 8 participants, were held. Discussions, which were recorded and organized according to category and theme, focused on problems in living with migraines and effective treatment of migraines.
POPULATION: Participants were 24 people who had been experiencing 1 to 2 migraines a month, each lasting 1 to 2 days, for at least 6 months.
RESULTS: Five themes emerged: (1) impact on family, (2) misunderstanding by others, (3) effect on work, (4) physician care issues, and (5) issues related to medical insurance and drug companies. A majority of participants identified early treatment as the most important consideration for new migraine sufferers. Many participants preferred to have a relationship with their physicians in which they developed a treatment plan together rather than receiving generic educational materials.
CONCLUSIONS: Results suggest that patients are interested in understanding their migraines and securing relevant information in addition to obtaining pain relief. Patients desired collaborative relationships with their physicians and a team approach to treatment. Suggestions for physicians who treat patients who have migraines are reviewed.
KEY POINTS FOR CLINICIANS
- Migraine sufferers said they would prefer a collaborative relationship with their physician and a team approach to therapy.
- Patients reported that they often felt dismissed by their physicians, frustrated by insurance and drug companies, and misunderstood by their loved ones.
- Participants said early treatment of migraine headaches should be emphasized for new migraine patients.
Twenty-five to 30 million people in the United States have migraine headaches. Of these, approximately 11 million are moderately to severely disabled by their attacks,1-4 resulting in significant lost labor costs,5 substantial health care expenses,6 and a pervasive negative impact on overall quality of life.
Although migraine is a highly treatable disorder, almost one half of people who have migraines are not currently under the care of a physician for that condition.7 Further, data from the American Migraine Study II, sponsored by the National Headache Foundation, show that those who have received a diagnosis suffer at a level similar to that of those who have not. This finding suggests that effective migraine management depends not only on diagnosis but also on ongoing treatment. The opportunity exists to reduce the indirect costs, disability, and impairment associated with this disorder. However, the primary care physician has a pivotal role in the management of migraine.
The aim of this study was to identify: (1) the areas that people who have migraines consider most problematic in living with their headaches and (2) the types of physician assistance they believe would be most helpful in managing this disorder.
Methods
This exploratory study used a focus group format to identify topics of concern to people with migraine. Although this format has inherent limitations, its use in health science research has gained considerable acceptance in recent years.8-10 Focus groups are recognized for their ability to identify issues of the greatest importance to individuals.11
The Institutional Review Board of Ohio University, Athens, Ohio, approved all procedures used in this study. Names of potential participants were obtained from a list of people who had responded to community-wide advertisements recruiting subjects for a separate headache study conducted by 2 of the authors (K.A.H. and F.J.O.). Telephone screenings were reviewed to identify those with 2 to 8 migraine days per month by self-report. Of the 59 patients contacted, 24 attended a focus group. (The remainder did not meet criteria, were uninterested, or had transportation or scheduling difficulties.) Two thirds of the sample had 1 to 3 migraines per month. The remainder of the sample experienced more frequent migraines. Every participant met International Headache Society criteria for migraine with or without aura and had migraine as the primary headache diagnosis. Only 2 patients indicated a history of occasional tension-type headaches. All had consulted a physician about their headaches, with 60% presenting to their primary care physician exclusively and the remaining 40% consulting a neurologist at some point. Attendees were given a $30 incentive for their participation.
The groups were conducted by a moderator (C.K.C.) and an assistant (S.E.W.) using an interview guide. Eight questions were addressed during each meeting: (1) What is the biggest problem you have encountered in trying to manage your migraines? (2) What is the most important lesson that you have learned in trying to manage your migraines? (3) Where did you get your ideas regarding how to manage your migraine headaches? (4) Where and how do you think would be the best way to get information? (5) What types of information or skills do you think would be most useful to you and others for managing migraines? (6) (Of the information gathered) what topics do you think are most important? (7) If topics had to be eliminated, which ones could go? and (8) What other advice do you have for us?