Learning the full impact of migraine through patient voices: A qualitative study

Abstract

Objective:

To better characterize the ways that migraine affects multiple domains of life.

Background:

Further understanding of migraine burden is needed.

Methods:

Adults with migraine randomized to mindfulness-based stress reduction or headache education arms (n = 81) in two separate randomized clinical trials participated in semistructured in-person qualitative interviews conducted after the interventions. Interviews queried participants on migraine impact on life and were audio-recorded, transcribed, and summarized into a framework matrix. A master codebook was created until meaning saturation was reached and magnitude coding established code frequency. Themes and subthemes were identified using a constructivist grounded theory approach.

Results:

Despite most participants being treated with acute and/or prophylactic medications, 90% (73/81) reported migraine had a negative impact on overall life, with 68% (55/81) endorsing specific domains of life impacted and 52% (42/81) describing impact on emotional health. Six main themes of migraine impact emerged: (1) global negative impact on overall life; (2) impact on emotional health; (3) impact on cognitive function; (4) impact on specific domains of life (work/career, family, social); (5) fear and avoidance (pain catastrophizing and anticipatory anxiety); and (6) internalized and externalized stigma. Participants reported how migraine (a) controls life, (b) makes life difficult, and (c) causes disability during attacks, with participants (d) experiencing a lack of control and/or (e) attempting to push through despite migraine. Emotional health was affected through (a) isolation, (b) anxiety, (c) frustration/anger, (d) guilt, (e) mood changes/irritability, and (f) depression/hopelessness. Cognitive function was affected through concentration and communication difficulties.

Conclusions:

Migraine has a global negative impact on overall life, cognitive and emotional health, work, family, and social life. Migraine contributes to isolation, frustration, guilt, fear, avoidance behavior, and stigma. A greater understanding of the deep burden of this chronic neurological disease is needed to effectively target and treat what is most important to those living with migraine.

INTRODUCTION

Migraine is the second leading cause of disability worldwide with a substantial impact on quality of life, expanding from interpersonal relationship dynamics to occupational functioning and overall well-being.^1–7 Although research has begun exploring the impact of migraine on family life, education, career, and finances,^4,8–12 there is more to learn to better characterize the full range of domains of life impacted by this chronic neurological disease.^2,8,10,11 Compared with many chronic pain conditions that increase in prevalence with age,¹³ migraine is most prevalent during the peak years of life productivity (25–55 years),^14–16 which directly contributes to differential impact in different domains of quality of life. Understanding the disease impact of migraine is important to (1) inform patient-reported outcomes for migraine studies and trials; (2) characterize the true burden of disease in hopes to increase resource allocation to treating and mitigating the full effect of migraine; and (3) create treatment regimens that address all impacts of migraine to enhance disease management.^2,8,9

Depression and anxiety are highly comorbid with migraine,^6,15,17 although the effects of migraine on well-being may be broader than previously conceptualized, including other realms such as guilt, anger, and attenuated physical and cognitive functioning.^3,6,8–10 Recognizing the ways in which migraine impacts emotional functioning can provide additional treatment targets in people with migraine beyond primary psychiatric dysfunction.

The objective of the current study was to better characterize the ways that migraine affects multiple domains of life in adults with migraine. Qualitative interviews were conducted with patients who participated in trials of nondrug interventions for migraine to assess their experiences with the study. We also specifically queried about the impact of migraine on their lives. These participants can be expected to be willing to introspect on the various aspects of quality of life impacted by migraine as they were treatment-seeking, suggesting they experienced disease burden they attributed to migraine. Through the voices of patients living with migraine, we hoped to gain rich insights and perspectives on the domains of life impacted by migraine.

METHODS

Semistructured qualitative interviews (n = 81) based on grounded theory¹⁸ were conducted as part of two randomized controlled trials (RCTs) evaluating mindfulness-based stress reduction (MBSR) in adults with migraine (full study details reported elsewhere).^19,20 MBSR teaches participants mindfulness through didactic and experiential learning during eight weekly 2-hour classes. The pilot RCT, conducted in Boston, MA, enrolled participants with 4–14 migraine days/month between January and March 2012. The larger RCT, conducted in Winston-Salem, NC, enrolled participants with 4–20 migraine days/month between August 2016 and October 2018, with stratification by migraine frequency (low [4–9] vs. high [10–20] days/month with migraine). Participants were not informed of mindfulness course content for the larger study, as recruitment materials described the study as evaluating a “nondrug treatment” with participants masked to treatment assignment. The Headache (HA) Education intervention served as a comparator group that matched the time commitment/attention of the MBSR intervention but provided participants with information on migraine instead of MBSR. Adults with migraine randomized to the MBSR intervention arm of the pilot study (n = 10),¹⁹ and the MBSR or HA Education arms of the larger study (MBSR, n = 33; HA Education, n = 38)²⁰ participated in qualitative in-person interviews after completion of the intervention. For study inclusion of both studies: (a) United Council for Neurologic Subspecialties-certified headache physicians conducted in-person evaluations to confirm International Classification of Headache Disorders migraine diagnoses and (b) prospective diaries captured frequency. Participants were able to stay on their current acute and prophylactic migraine medications during both clinical trials and committed to maintaining medication stability for study duration. Both the pilot RCT and the larger RCT were IRB approved (through Partners and Wake Forest Baptist, respectively) and registered at clinicaltrials.gov (NCT01545466 and NCT02695498). All participants provided written informed consent.

All interviews used a semistructured interview guide based on grounded theory. All interviewers were trained in qualitative interview techniques, with multiple probing techniques taught to clarify details effectively, without inappropriately leading or directing of participants. Most questions were open-ended. The main areas of focus for the interview guides for both RCTs included the following: (1) medical condition/impact on life; (2) research study experiences; (3) positive and negative aspects of the study; (4) impact of study on migraine; (5) class content/logistics; (6) specific questions about classes; (7) change from the study; (8) study staff; and (9) expectations/beliefs. For the larger RCT, additional areas of focus were added to include questions about (1) heat pain training; (2) questionnaires; (3) headache logs; and (4) estimated headache frequency change for life value. Interviews opened with the question, “How does migraine impact your life?” Additional questions queried on how the interventions affected their experience with migraine. The main intent of the interviews was to capture participants’ experiences during the clinical trials and with the interventions (and these results will be reported elsewhere), so specific domains of life impacted by migraine were not specifically asked. For example, participants were not asked how migraine affected cognitive or emotional health but were asked if they felt the intervention impacted mental, physical, or cognitive health. All interviews were conducted, audio-recorded, and transcribed verbatim by a blinded team member. The interviews from the larger study lasted on average 47 min (SD 13.9) with a range of 18–77 min and a total of nearly 3300 min of recorded interviews.

Undergraduate, masters, and MD/PhD students (n = 7) worked with the Principal Investigator to analyze the transcripts through weekly team meetings (August 2019–January 2021). A qualitative interview expert (from Wake Forest Qualitative and Patient-Reported Outcomes Developing Shared Resource) provided educational training, consultation, and participation in team meetings for the first 6 months of analysis. All students were educated on qualitative interview techniques and provided educational materials, including the textbook The Coding Manual for Qualitative Research,²¹ with regularly assigned readings reviewed.

Transcripts were first summarized into a framework matrix using a standardized template with 12 key domains based on the interview guide.^22–25 Investigator triangulation²⁶ was achieved through two undergraduate students independently summarizing each transcript, comparing summaries, resolving any discrepancies, and then developing a final summary. After 50% of the summaries were completed in pairs and a consistent summary technique was established, the undergraduate researchers then independently summarized the remaining transcripts. A doctoral candidate on the research team cross-checked all final summaries against the original transcripts to ensure accuracy and completeness. Once all transcripts were summarized, the data were aggregated into a final matrix organized by key domain and cohort. In addition to conversing about challenges and addressing any issues, the weekly team meetings included discussions on emergent ideas and potential codes.

After all team members were familiar with the data through the rapid matrix summary technique, a master codebook was created until meaning saturation was achieved.²⁷ The transcribed interviews were uploaded to Dedoose software, and the codebook was applied to interviews by six coders. Two independent raters assessed at least one third of the interviews, and tests for interrater reliability across team members confirmed consistency. The weekly team meetings continued to provide an opportunity for discussions, with emerging patterns, categories, and themes considered. A constructivist grounded theory approach²⁸ was used to identify themes and subthemes. An iterative process ensued over several months with coding, categorizations, discussions, and resolution of disagreements until team members agreed on final themes and subthemes.

Statistical analyses

Descriptive statistics (e.g., mean and standard deviation) were used to describe continuous data; frequency and percentages were used to describe categorical data. For headache frequency data, median, 25th, and 75th percentiles were also provided. Magnitude coding was applied to establish code frequency²¹ (codes were counted only once per participant), and Dedoose analysis was used to divide the frequency of code as a function of group (MBSR vs. HA education) to assess whether program effects diverged between groups. A Fisher’s exact test was used to compare MBSR versus HA education groups for each theme/subtheme, with statistical significance defined at p < 0.05. Given the exploratory nature of this research, we defined marginally significant results as p < 0.15, the purpose of which was to highlight possible directional associations that warrant further research. All tests were two-tailed. A thorough audit trail was maintained throughout data analysis to enhance reliability. All statistical analyses were performed using R Statistical Software.²⁹

RESULTS

Baseline characteristics of participants were similar in both studies (Table 1). Participants were on average 46 years old (SD 17) in the pilot study and 45 years old (SD 13) in the larger study. Participants were predominantly women, white, privately insured, and had completed college or higher education. The average baseline headache frequency during the 28-day run-in period was 10.4 (SD 3.1) in the pilot study and 9.8 (SD 3.6) in the larger study, with median frequencies of 10 (25th percentile, 75th percentile: 8, 12) and 9 (7, 12), respectively. Participants had a personal history of migraine for 26 years on average (SD ranged from 13 to 19, depending on group), and most also had a headache family history. Headache-related disability was high in both studies, with scores reflective of moderate (MIDAS—1 month)^20,30–32 or severe headache-related disability (HIT-6).

TABLE 1.

Baseline characteristics of study participants from both clinical trials

Baseline characteristic	Pilot RCT	Larger RCT
	MBSR (n = 10) n (%)	MBSR (n = 37)a n (%)	HA Education (n = 38) n (%)
Sociodemographics
Age (years); mean (SD)	46 (17)	44 (12)	46 (14)
Gender
Female	9 (90)	34 (92)	34 (90)
Male	1 (10)	3 (8)	4 (10)
Race
White	9 (90)	33 (89)	33 (87)
Black or African-American	1 (10)	4 (11)	5 (13)
Primary health insurance
Private	8 (80)	33 (89)	30 (79)
Medicare/medicaid/other public	2 (20)	4 (11)	7 (18)
None	0	0	1 (3)
Marital status
Married/living with partner	9 (90)	27 (74)	24 (63)
Divorced/separated/widowed	0	5 (13)	7 (18)
Single-never married	1 (10)	5 (13)	7 (18)
Current employment statusc
Employed/self-employed full time (>30 h/week)	4 (40)	25 (68)	22 (58)
Employed part-time	1 (10)	3 (8)	4 (11)
Student, homemaker, volunteer	2 (20)	6 (16)	2 (5)
Unemployed, retired	3 (30)	3 (8)	10 (26)
Education
≤High school, n (%)	1 (10)	3 (8)	2 (5)
College, n (%)	4 (40)	20 (54)	25 (66)
Graduate degree, n (%)	5 (50)	14 (38)	11 (29)
Recruitment source
Academic medical center/provider referral	8 (80)	18 (49)	21 (55)
Community	2 (20)	19 (51)	17 (45)
Headache features
Disease characteristics during baseline HA log
Headache days during 28-day baseline, mean (SD)	10.4 (3.1)	9.6 (3.4)	9.9 (3.7)
Migraine days during 28-day baseline, mean (SD)	4.2 (2.9)	7.3 (2.6)	7.6 (3.0)
Disease history
Years with migraine, mean (SD)b	26 (19)	26 (13)	26 (14)
Migraine with aura	4 (40)	14 (38)	16 (42)
Family history of headache	7 (70)	25 (68)	23 (61)
Use of treatments
Current use of prophylactic treatmentc	8 (80)	12 (32)	20 (53)
Current use of acute medicationd	10 (100)	33 (89)	31 (82)
Experienced headache medication side effect	5 (50)	23 (62)	27 (71)
Stress or let-down stress as a trigger	8 (80)	28 (76)	27 (71)
Current or past diagnosis of depression	2 (20)	15 (41)	17 (45)
Current or past diagnosis of anxiety	2 (20)	12 (32)	17 (45)
MIDAS-one month at baseline,e mean (SD)	12.5 (9.8)	13.7 (11.5)	10.0 (6.7)
HIT–6 at baseline, mean (SD)	63.0 (8.0)	63.0 (7.0)	62.8 (4.2)

Note: Instrument score ranges: Migraine Disability Assessment—1 month (0–115), higher scores reflect greater disability, MIDAS is typically used as an average over 3 months; to facilitate interpretation of the MIDAS 1 month data presented, the mean estimate results (but not the confidence intervals) can be multiplied by 3 for conversion to the typical 3-month assessment³⁰; score range for 3-month MIDAS: 0–5 little or no disability, 6–10 mild disability, 11–20 moderate disability, 21+ severe disability.

Headache Impact Test-6 (36–78), higher scores reflect greater headache impact, score range: <49 little to no impact, 50–55 some/moderate impact, 56–59 substantial impact, 60+ severe impact.

^aBaseline characteristics from the larger RCT represent 75 participants who completed visit 2 (four additional participants than the 71 who participated in the qualitative interviews).

^bn = 1 missing data (HA Education group).

^cUse of prophylactic medication from the larger RCT: There was a statistically significant baseline difference between MBSR and HA Education in baseline use of prophylactic medication (p = 0.01).

^dMissing data from larger RCT for acute medication use n = 9 (n = 3 MBSR group; n = 6 HA Education group).

^eMIDAS 1 month was used to decrease recall bias and improve the accuracy of the results (compared with the typical 3-month recall period).^30–32 MIDAS 1 month results from the larger RCT: there was a statistically significant baseline difference between MBSR and HA Education in baseline measure of MIDAS (p = 0.033). There were three identified outlier patients in the MBSR group with baseline MIDAS scores >50 (for reference, the maximum baseline MIDAS in the Headache Education group was 36). With these outliers removed, the baseline difference between treatment groups is no longer statistically significant (p = 0.201).

Six main themes on the impact of migraine emerged (Table 2): (1) global negative impact on overall life; (2) migraine impact on emotional health; (3) migraine impact on cognitive function; (4) migraine impact on specific domains of life with resulting reactions; (5) fear and avoidance; and (6) stigma surrounding migraine.

TABLE 2.

Summary of themes and subthemes representing impact of migraine^a

Theme 1: Global negative impact on overall life, n = 73 (90%)
Subthemes
Migraine controls life Migraine makes life more difficult Migraine causes disability during attacks Lack of control over migraine attacks Attempts to push through despite the migraine
Theme 2: Migraine impact on emotional health, n = 42 (52%)
Subthemes
Isolation Anxiety Frustration/anger Guilt Mood changes/irritability Depression/hopelessness
Theme 3: Migraine impact on cognitive function, n = 11 (14%)
Subthemes
Concentration difficulties Communication challenges
Theme 4: Migraine impact on specific domains of life with resulting reactions, n = 55 (68%)
Subthemes
Work/career, resulting reactions: guilt, change of job status, presenteeism, financial impact, school impact Family life, resulting reactions: frustration, guilt, disrupted time Social life, resulting reactions: irritability, altered plans, communication
Theme 5: Fear and avoidance, n = 14 (17%)
Subthemes
Pain catastrophizing Anticipatory anxiety Avoidance behavior
Theme 6: Stigma surrounding migraine, n = 10 (12%)
Subthemes
Externalized stigma Internalized stigma

^an = 81; N (%) represented throughout.

Despite most participants being treated with acute and/or prophylactic medications (Table 1), most (90%) of the participants reported migraine had a negative impact on their overall life (theme 1, Table 2) with specific domains of life affected in 68% (theme 4, Table 2). Although self-reported current or prior history of either depression or anxiety ranged from 20% to 45% at baseline in the trials (Table 1), more than half of the participants endorsed migraine having an impact on emotional health (Table 2). Although not specifically queried, 17% of the participants described migraine leading to fear and avoidance behavior, 14% endorsed migraine’s impact on cognitive function, and 12% reported stigma related to migraine (Table 2).

Participants described the global negative impact on overall life (Table 3) by expressing how migraine: (a) controls life; (b) makes life difficult; and (c) causes disability during attacks, with participants (d) experiencing a lack of control over migraine attacks and/or (e) attempting to push through despite migraine. Emotional health was affected through (a) isolation; (b) anxiety; (c) frustration/anger; (d) guilt; (e) mood changes/irritability; and (f) depression/hopelessness (Table 3). Cognitive function was affected through both concentration and communication difficulties (Table 3).

TABLE 3.

Global negative impact of migraine on life, cognitive function, and emotional health

Theme 1: Global negative impact of migraine on life
Subtheme	Representative quotations
Migraine controls life	“[Migraine attacks] have ruined my life in so many ways … I cannot do so many things. I have to stop doing things that I like to do [and] I can’t enjoy things I like to do …” “[Migraine attacks] have just been a controlling factor in my life, something that I always have to think about like if I’m planning something or just my everyday life” “[Migraine attacks] impact my ability … to do things that I want to do. So, I have to think about, how much time do I lose when I can’t participate?” “[Migraine attacks] dictate whether I can eat and drink certain things. They dictate certain days of my life in terms of what I can and can’t do. So, I would say they have a pretty big impact on my overall outlook on things. It’s a drag having them …” “[Migraine attacks] are my main medical frustration … [and affect] my ability to enjoy life” “[Migraine has] limited the amount of things that I can do” “The [migraine attacks] have frequently kept me from being my best self”
Migraine makes life difficult	“When I get a migraine, it is quite severe. The day of the migraine I can’t maintain any normal activities. The pain is so severe. I can’t work, can’t take care of my kids, can’t take carpools. Have to sit in a dark room and can’t do anything. It’s a loss of a day. I am losing a day of my life” “[My migraine attacks] make doing day-to-day things a lot more difficult. It makes caring for my kids harder when we get them on the weekends. It makes doing my job harder if I’m out of work because I’m not there to do it, if I stay at work with one it makes concentrating harder which impacts my quality of work. It doesn’t just affect me, it affects the people around me. It affects my husband because it puts more on him when I have one. It makes day-to-day living harder” “[Migraine attacks] impact your daily functioning. When you have a headache, it’s hard to concentrate. It’s hard to put on a smile and do work because I have to interact with people and can’t be when I have a headache. I can make it through the day but when I get home, I go to bed. Being a mom makes it very challenging after you’ve worked all day” “Migraine impacts my life quite a bit … Sometimes it interferes with life. Depending on how intense I am unable to complete daily tasks”
Migraine causes disability during attacks	“[My migraine attacks] can be debilitating at times, and I absolutely cannot do anything. I have to stop everything, can’t work, can’t interact. I just have to go to my room and just sit in the dark and lay there … and it can take 24 to 48 hours. And if it is extreme I have to go the hospital and get a shot … I have had a lot of headaches this year that I have missed work … pretty much … every weekend I lose a day of the weekend for a headache and can’t function” “I would say [my migraine affects me] greatly because sometimes they are just so debilitating that I can’t get out of bed, I can’t go to work, things like that” “[My migraine attacks have] … kept me from doing things so … they’re an impediment and have been an impediment to doing things I want to do in life … so if I get a migraine and it’s uncontrolled and I don’t do anything about it, [I’m] out of commission for a day or two” “It is hard to function. After a migraine, it is difficult to bounce back, it is like a hangover”
Lack of control over migraine attacks	“There are some [migraine attacks] I can’t completely control, because I get them around my period …” “I feel as if I am not reliable. At work, I can have a full-day schedule, or I can have something planned with family or friends, but if I get a migraine or take a medication, the side effects put me to sleep. So, I feel as it interrupts my entire life, because I have to cancel everything. And as far as functioning, I don’t even clean my house or wash the dishes. I don’t sit up except to drink a little bit of water. I try to just rest, quiet, dark, no smells, no sounds, and it’s very frustrating, because you don’t feel reliable. If you want to do something and you get a headache everything gets wiped away. Then, you’re constantly trying to catch up on what you needed to do the day before. And as soon as you feel like you’ve caught up, you get another headache, and you’re right back where you started”
Attempting to push through despite the migraine	“… I don’t stop what I’m doing with these [migraine attacks] so I try to do the best I can despite the pain or I would love to lay down in a dark room and take something to make it go away but that’s not always possible. I do the best I can during the day then at nighttime I lay down in a dark place. But my [migraine attacks] last for days so there’s no way I can stop for that many days a month” “Now, at work, I can’t really leave and go home because I’m a physician and it’s just hard to disrupt us, so I sort of grin and bear it except for the times that I’m throwing up, then I have to stop and then everything pauses … My patients would start noticing that I didn’t feel good, so they would start asking, “Are you okay doc? Do you need to stop and take care of yourself?” “Somehow I’m able to power through at work” “I feel like I can’t be at my best when I have them. Since I’ve had my children, well prior to having my children I could lay down and get into a dark room and just wait it out, but now I seem to have to work through them most of the time. I mean if it gets really bad I can lay down for a little but I can’t sleep off the medicine or anything like that. Um, so it’s difficult because I have to be 100%” “I have a super high pain tolerance, so I just kind of work through any pain that I have. But they have continually gotten worse …” “When I have bad [migraine attacks] I get very short tempered. It’s just hard to deal with sometimes but I still carry on with my day-to-day life” “… there were times that it made working hard, but I persevered …”
Theme 2: Migraine impact on emotional healtha
Subtheme	Representative quotations
Isolation	“[Migraine] kind of makes you feel like nobody understands and it’s just like ugh it can kind of get you down sometimes emotionally” “… and I was throwing up and in bed … but they thought it was a joke because nobody takes it seriously and nobody knows what a migraine is … so I feel lonely” “I feel very alone all my life [without anyone understanding migraine] …”
Anxiety	“You get sucked into it which causes anxiety and stress and [it causes] this tremendous headache. Then everything stops because the headache is so debilitating” “It’s depressing and it causes anxiety because you want to be doing something … you are supposed to be doing something. It is just very frustrating because you cannot do anything, even if you try you just have to give in”
Frustration/anger	Uncertainty over “cause” leads to frustration “… With my headaches and [migraine attacks] I haven’t found the cause and it gets very frustrating because if there’s a cause, fix the cause, and don’t treat the problem! … Even though there may not be anything physical causing my headaches, it’s very emotionally driven” “I have had them since the age of 5. They have gotten worse over the years. That was really hard, no one knew why I was getting them I just was” “… not knowing why I get them is really frustrating too” Frustration/anger with migraine impact on life and lack of response to treatments “My [migraine attacks] prevent me from doing a lot of activities I might have to cancel plans if I have a migraine and just lay down the whole day so it’s really frustrating” “… it’s just so frustrating when [migraine attacks] happen so often or when I feel like I’m doing everything I can to prevent them” “With headaches, I can still function, but [migraine attacks] really impact my life … Prior to this, I would have tears of frustration” “Just frustrating thinking about all the things you won’t be able to do based on the migraine. Instead of just dealing with the headache you are thinking about everything it’s affecting, which makes negative feelings because you can’t get anything done” “I was almost getting angry at [migraine attacks] because I was having them so often …” “It’s very frustrating that if I have a migraine it’s usually putting me in bed”
Guilt	“… Sometimes you don’t really realize how much it affects your life and sometimes you don’t really know or understand how it affects the people around you. But you feel guilty about it at the same time. Just trying to find a way to function in life, in work, and in your family”
Mood changes/irritability	“The mood swings you get [with migraine attacks] and those kinds of things you know have impacted my family” “You are not a happy person … it’s like if they know that if the lights are out its best not to talk to me because I will be short” “If I’m at work sometimes and I have a migraine, I’m definitely more irritable than I am when I go out normally”
Depression and/or hopelessness	“When my [migraine attacks] were at their most severe, I wondered if I can continue living with them … Hopeless. I think that’s one of the best words to describe how it feel sometimes … I have a healthy body but the [migraine attacks] keep happening even if I try and eat healthy and exercise” “[My migraine attacks] have gotten a lot worse. It is very frustrating. Sometimes I will go through streaks where my headaches affect my quality of life and I become depressed. Am I going to live like this every single day? You question if you want to live. It’s really hard. I am a stay at home mom, I don’t have a nanny, I don’t have a babysitter. I have to push through it. If I cannot [push through], I cannot do my job as a mother” “… Feeling hopeless about it to not the point of suicidal just how can I keep going if this is how I feel?..How do I work every day if twice a week I have a migraine?”
Theme 3: Migraine impact on cognitive functiona
Concentration difficulties	“It makes doing my job harder … if I stay at work with one it makes concentrating harder which impacts my quality of work” “I cannot concentrate, I cannot focus …” “[Migraine attacks] impact my ability to think clearly and to organize” “[Migraine attacks] really impact my productivity and my ability to reach my goals on a timeline I want to”
Communication challenges	“… The days that I would push myself to go to work, it was hard to think and concentrate, and sometimes I just sounded like a blooming idiot, because I could not communicate. I could not think of words, I would forget things, it was very, very difficult” “It’s debilitating almost. You know I’m sick feeling, I’m dizzy, I’m nauseated, I don’t want to be in the light, I can’t think straight, I can’t talk straight” “I did have trouble speaking and remembering things and the things that it asks before your headache” “When I’m having a migraine, it keeps me from being able to communicate well with someone else” “[When] I have a headache, [I ask myself], can I talk to them or can I not talk to them?”

^aAdditional quotations demonstrating the impact on cognitive function and emotional health are present in Tables 4 and 5 and may be specific to certain domains of life.

Migraine impacted multiple domains of life (Table 4) including the following: (a) work/career; (b) family life; and (c) social life. Resulting reactions to each domain of life included the following: (a) work/career: guilt, change of job status, presenteeism, financial impact, and school impact; (b) family: frustration, guilt, disrupted time; and (c) social: irritability, altered plans, and communication. Fear and avoidance showed up (Table 5) through (a) pain catastrophizing; (b) anticipatory anxiety; and (c) avoidance behavior due to fear of migraine or fear of migraine trigger. Both externalized and internalized stigma were also reported (Table 5). Representative quotations illustrate the depth of the impact for all themes in Tables 3–5.

TABLE 4.

Migraine impact on multiple specific domains of life

Theme 4: Migraine impact on specific domains of life with resulting reactions
Subtheme	Reaction to migraine and representative quotations
Impact of migraine on work/career	Guilt “I feel like my work performance decreases and then I have a lot of guilt because I feel like I’m not carrying my weight on my team” “… it would be not as much blame but guilt when I am unable to follow through with something that I said I would. Which is why I said like I wouldn’t miss work because I’d feel guilty because of it even if I’m not as productive” “I hate having to leave working because of [migraine]. It does happen where I’ll get up in the morning and think I can make it through the day but then after I get to work I realize it’s just getting worse and so I have to say that someone has to cover for me because I have to go home and I really hate that” Change of job status “[Migraine attacks] have also impacted my life … emotionally because I’ve been fired from a job before because of my [migraine attacks]” “I changed careers because … I was a special education teacher. It was very stressful and I got to where it was more than I could do just mentally because of the [migraine attacks] so I left …” “[Migraine has affected me] very seriously. I quit my job, and I am on disability. My [migraine attacks] got chronic, and it was to the point to where 1–3 days per week, I couldn’t work. I was a manager, I had people working under me, had a lot of responsibility, a lot of technical stuff, talking to people on the phone … it was hard to think and concentrate, it was very, very difficult. I went through [difficulties trying to push through work] for about a year. My employer worked with me and cut my time down, cut my responsibilities down, but the stress of dealing with that, trying to work and forgetting things, was too much and I just couldn’t work anymore” “… if I had not been 3 months away from retiring and planning on retiring, I was in law enforcement and this would have been a disability for me. I carried a gun and all sorts of weapons so if I had not been 3 months away from a planned retirement, I probably would have had to retire anyway, because I couldn’t have functioned, you know, while on duty when the [migraine attacks] hit …” Presenteeism “I also feel bad because my work is so important to me and I don’t want to jeopardize my job or to not be able to be fully present at my job because I can’t focus and I’m constantly feeling either a headache coming on, having pre-migraine symptoms, feeling hung over from my medicine, or feeling distracted because I don’t know if my medicine is going to work” “… if I do go into work, I think my productivity is fairly poor when I’m struggling through a migraine. I don’t feel like I miss a lot of work because I try to power through them but I do feel like my concentration and lack of focus affects my job” “They interfere with work as far as productivity. And eventually I took a month off to try to see if I could do something different and get it under control …” “When I have a migraine I am unable to work, so I’ve had to cancel and reschedule clients” Financial impact on work “I miss more work than I’m comfortable, probably 6 times a year. You know it’s so bad that I miss work. I turned down a job that pays about $15,000 more a year because it had travel involved, I just turned that down recently, because it’s like travel to China and Europe and I knew I’d have a migraine. I would land and I’d have to go to a hotel room for a day. So, it’s affected my income” “I do the best that I can. At one point I was missing a lot of time, financially it was impacting me because I couldn’t function with the migraine … there are times where I still try to come to work or if it starts at work, I try to maintain but it is extremely hard especially with the type of work I do … It is hard” Impact on studies/academic life “I started getting [migraine attacks] three years ago that were really bad … It became difficult for me to keep up with my classes, to keep up with my social activities, I would have to cancel plans, or things would just take me longer. Or I’d be like I can’t do homework now I have to sleep for a few hours because my head just hurts or I’d just have to lay here quietly” “When I get them, they are often debilitating. The only way I’ve been able to fully get rid of them in the past is to basically go to sleep. That has impacted me with schoolwork and often work-work. Because I can’t function and I have to be like ‘I have to take a nap, sorry’ I’ve had to stop what I’m doing to try to sleep off my headaches. That’s not helpful to anybody really”
Impact of migraine on family life	Frustration “It’s frustrating at times because it takes away from family time on the weekends or at night. You don’t feel as well as you want to. It’s frustrating for your family, so that’s definitely an impact” “… it has limited the amount of things that I can do. It’s very frustrating that if I have a migraine it’s usually putting me in bed. I’ve got an 18-month-old right now and that’s tough because I feel like I can’t take care of him when I have a migraine. And that I have to be a burden to somebody else, you know for somebody to come in and help watch him. My boyfriend has taken off work several times just to help watch him if I have a migraine. If there’s a family function and I have a migraine you know I’m missing out on stuff like that. So yeah it’s been frustrating and it’s limited me in a lot of things” “At home I will have to lie down or take a shower to try to make it feel better, so my husband will have to pick up some of the home responsibilities. It affects more of that dynamic, rather than work life. I’m able to power through at work. It’s something that I feel like I’m managing but it’s frustrating to have it happen so frequently. Having times where I don’t have medication, I always have to be prepared for a migraine” “… It’s frustrating at times because you don’t feel as well as you want to. It’s frustrating for your family” “[After pushing through them at work all day] when I get home I think that is like my comfort zone where I feel like I can finally crash so I usually just go to straight to bed so I feel that it affects me being able to cook dinner for my family or housework or any other things that we need to do after getting home” Guilt “I’m sorry [crying] it affects me because it takes me away from my family, my kids … And anytime that I can’t spend time with them it hurts me; it makes me feel bad. It makes me [think] that that I’m a problem. And I’m supposed to be there for them all the time, I want to be there for them all the time but when I have my [migraine attacks] it just takes me away from them and that makes me feel bad” “They have impacted my family a lot. They have gotten a lot worse in my 30s, which is when I had my daughter. So, I feel bad that my kids, I’ll have to tell them that, you know, mommy’s got to take her sleepy medicine and go lay down … they are really good about it but I feel really guilty about it a lot of times …” “If I have one in the evening, I’m in the bed. So that ruins family time and causes me to feel guilty because I’m not spending time with my daughter and my husband’s got double duty. They increase my anxiety at times” “… my family is very good about taking care of me but … I don’t want to have to be taken care of … I don’t want them to feel like “oh jeez, here it is, you know what I mean, she’s got another one” Disruption from time with others “… it would get to where whenever I had a day off, I had a migraine … my daughters and my husband and everybody … they just stopped including me in everything, so I felt like I was observing them live, but I wasn’t really living. So, that’s what I mean by I lost a lot of my life. And this was going on for, at this level … a good 5 years” “… Most of the days I can make it through the day but when I get home … [I] get my jammies on, and either go to bed or just lay on the couch or whatever. Being a mom makes it very challenging after you’ve worked all day … I have two boys, one’s 18 and the other will be 15 and we did joint custody on the younger one so I have him every other week and if I have a headache when he’s there and I have to go to bed, it just takes away our quality time because it’s so limited and if I have a headache and I’m grumpy and he has homework then we clash and it just makes relationships challenging when you have a headache” “It has affected my family … It puts a lot of stress on my husband and myself … There was a lot of stress with the relationships with my children, particularly with one daughter, who was a lot like my husband and simply did not want to be inconvenienced by me and what I was having to deal with … some family members were taking a trip to Alaska to go deep sea fishing, and after a while of planning, I decided I wanted to go, I really wanted to go and figured I could deal with it fine. I told my oldest daughter—the one who had a lot of trouble with it—that I had planned on going also, and she was quiet about it until a few days later when she called me back and said “Mom, I was excited about going on this trip until you told me you were going. I don’t want to deal with you, eating on a regular schedule, and what if you get sick and we have to turn the boat around—I don’t want to have to deal with it. I’m going on vacation.” So, I stayed home. She’s come a long way since then. It’s hard for people—they want to go out and live their life, and don’t want to deal with someone pulling them back”
Impact of migraine on social life	Irritability “But at the worst it just makes me irritable and not wanting to interact with a lot of people … I’m more irritable and don’t want to be around a lot of people” “[Migraine affects] how I interact with other people, like less patient …” “… I’m a people person and have to interact with people and you can’t go around grumpy all the time because you have a headache” Altered plans, missed activities with friends and family “…[Migraine attacks] may affect how I deal with others … plans that I may have made either have to be pushed back until the medication takes effect or pushed off until another day … Well if those people are involved in those plans, they are affected” “So, it has prevented me from social events … it has prevented me from being able to walk my dog at times … I can’t go into certain establishments. My fiance and I, we went to a concert and we had to leave because there was a light show that we were unaware of, and we actually had to leave because that’s one of my triggers and there was no avoiding it …” “[Migraine attacks] have also impacted my life I guess you can say socially … because I miss events and stuff with friends and family” Impact on communication with others “… Also speaking, smelling, light all those things affect me so others around me either have to not be around or not have a conversation and that’s unfortunate” “[During a migraine] the pain can be bad enough I am very miserable. And make it hard to relate to someone else”

TABLE 5.

Fear, avoidance, and stigma surrounding migraine

Theme 5: Fear and avoidance
Subtheme	Representative quotations
Pain catastrophizing worsens migraine and induces fear	“I’m fearful [the migraine attack is] not going to go away and I don’t know what I’m going to do about that” “….When I could calm myself down and not be so emotional about [the migraine], that was a big factor. The fear of it had made it worse …” “I only focus on the pain … I cannot function” “… There is definitely a [mind-body] connection. [If] your mind brought on [a panic] attack, your mind can probably prevent them. For the [migraine attacks] related to stress … I sometimes bring them on, and I have the power to lessen them, and I accept that …”
Anticipatory anxiety induces fear	“They cause a lot of anxiety because I don’t know when I’m going to have one and I’m fearful I’m going to have one when something comes up. And when I have one, I’m fearful it’s not going to go away” “I was all the time waiting when my next migraine was going to come, like I was anxious about it. I was expecting it in a negative way” “I would go out for the whole day and don’t have my [triptan] with me and hope I don’t get a headache today and so it’s still bothersome. I try to have a [triptan] in every car that I drive, in my wife’s car. … I travel a lot for work so I always [have to] make sure that I don’t get somewhere and not have any” “I always worry about whether they’re going to happen. I rarely miss work. I can work through it if I take a[triptan], but I’m always worrying about running out of [triptans] because I only can get 9 [per] month. Sometimes I have to stop and slow down because of them” “… also the anxiety about it, being anxious about maybe having to leave work or maybe not do things at home, maybe not cook dinner” “[Migraine attacks] interrupt my day and they make me worry I won’t be able to participate in my daily activities and work which is painful and frustrating. But for now, I have medication that stops them so that at least I can continue with my day so. It’s scary because I’m right on the cusp of having more than I can treat with my medicine”
Avoidance behavior due to fear of migraine or fear of migraine trigger	“I can only go places during a certain time of the day. If I have to leave in the middle of the day, I can’t really leave because the sun is just so incredibly awful. There are certain places I just can’t go. There’s just a lot of stuff I can’t deal with anymore. Like, taking kids outside, I can’t go outside because of the traffic and there’s a place behind our apartment that smells awful sometimes” “… I look for what my migraine triggers were, so I avoid it. I avoid restaurants with ceiling fans, I avoid venues with light shows …” “Before I had kids, I was a teacher … I was able to identify triggers like smells were a big trigger so I would avoid perfume counters and certain students. I would literally walk outside the building to go around to my classroom rather than walk in that hall because I knew it would give me a migraine. They weren’t debilitating but at the same time they affected my life to the point that I would come up with hacks for daily living, you know …” “I’ve stayed away from some of the things I ate on a regular basis before …”
Theme 6: Stigma surrounding migraine
Subtheme	Representative quotations
Externalized stigma: participants feel judged	Lack of knowledge in the community “You can’t see our [migraine attacks], and you may see the tears, but because folks can’t see our [migraine attacks], they often dismiss them … It is, as intense and painful as a lot of things that have visible symptoms” Feeling judged for migraine’s impact on role functioning “Everyone is pretty understanding if they know I have a migraine they know I’m in my bedroom laying down and no loud noises. It’s kind of hard to keep a job if your employer isn’t understanding so I feel like some of my family members kind of judge me because they don’t really know what a migraine is. They’ve never had it they just think it’s a headache and it’s not just a headache” “You realize that people just don’t understand. [Prior to the study] I [felt] guilty all the time, [but now I realize] it’s not just me and I can kind of be okay with it now” “And the stress of not knowing when they are going to come might also perpetuate problem. And also, planning out events in the future, and hoping when I plan a trip I can relax. Then I go on a trip and get a migraine and everyone hates me”
Internalized stigma: participants feel different than others	“When I used to get [migraine attacks], I’d put a lot of blame on myself and get frustrated that I had a migraine and angry at myself that I couldn’t get rid of it … [I blame myself] because I have a rotten brain. Why do I have a defective brain? I just blame myself. It’s my brain so it’s my fault” “So I think just knowing the impacts of, that it’s normal that it affects your work, its normal that it affects your home life, because sometimes you feel a little abnormal” “They make you kind of feel like you’re walking around with a weight on your shoulders” “[Knowing others have migraine too] makes you feel less abnormal” “My personality is different [because of migraine]”

Overall, themes and subthemes were similarly represented across both MBSR and HA Education groups, although a few marginally significant differences across groups were seen (Figures 1 and 2). The global negative impact on overall life was similarly high for both groups: 88% for the MBSR group (n = 38) and 92% for Headache Education (n = 35), p = 0.716 (Figure 1). Impact of migraine on overall domains of life showed similar impact across MBSR (65%, n = 28) and HA Education (71%, n = 27), p = 0.638. Impact of migraine across specific domains of life showed a marginally significant difference across Work (MBSR 37%, n = 16 vs. HA Education 55%, n = 21, p = 0.122) without differences across Family (MBSR 40%, n = 17 vs. HA Education 32%, n = 12, p = 0.494) or Social (MBSR 33% n = 14 vs. HA Education 32%, n = 12, p > 0.999) (Figure 1). Impact of migraine on emotional health showed marginally significant difference across MBSR (60%, n = 26) vs. HA Education (42%, n = 16), p = 0.122 (Figure 2). Within the emotional health subthemes, impact of migraine across frustration/anger showed a marginally significant difference (MBSR 30%, n = 13 vs. HA Education 11%, n = 4, p = 0.054) and also across depression (MBSR 14%, n = 6 vs. HA Education 3%, n = 1, p = 0.114) (Figure 2). Statistically significant differences existed across mood changes (MBSR 26%, n = 11 vs. HA Education 8%, n = 3; p = 0.043) (Figure 2). Impact was similar across groups for isolation (MBSR 28%, n = 12, vs. HA Education 34%, n = 13, p = 0.632), anxiety/worry (MBSR 26%, n = 11 vs. HA Education 21%, n = 8, p = 0.794), and guilt (MBSR 16%, n = 7 vs. HA education 24%, n = 9, p = 0.419) (Figure 2). Migraine’s impact on cognitive function was similar across groups for both concentration difficulties (p = 0.293) and communication difficulties (p = 0.661). Fear/avoidance and stigma were also similar across groups (p = 0.777 and 0.177, respectively).

FIGURE 1.

Global negative impact of migraine (1A), impact of migraine on domains of life (1B), and impact on specific domains of life (1C) across MBSR and HA Education Intervention Arms. (A) The global negative impact on overall life was similarly high for both groups: 88% for the MBSR group (n = 38/43) and 92% for Headache Education (n = 35/38), p = 0.716. (B) Impact of migraine on domains of life showed similar impact across MBSR (65%, n = 28/43) and HA Education (71%, n = 27/38), p = 0.638. (C) Impact of migraine across specific domains of life shows a potential difference across work (MBSR 37%, n = 16/43 vs. HA Education 55%, n = 21/38, p = 0.122) without differences across Family (MBSR 40%, n = 17/43 vs. HA Education 32%, n = 12/38, p = 0.494) or Social (MBSR 33% n = 14/43 vs. HA Education 32%, n = 12/38, p > 0.999)

FIGURE 2.

Impact of migraine on emotional health across mindfulness-based stress reduction (MBSR) and headache (HA) Education intervention arms. (A) Impact of migraine on emotional health showed a potential difference across MBSR (60%, n = 26/43) vs. HA Education (42%, n = 16/38), p = 0.122. (B) Impact of migraine across different subthemes of emotional health showed no group differences across isolation (MBSR 28%, n = 12/43, vs. HA Education 34%, n = 13/38, p = 0.632), a potential difference across frustration/anger (MBSR 30%, n = 13/43 vs. HA Education 11%, n = 4/38, p = 0.054), and without differences across anxiety (MBSR 26%, n = 11/43 vs. HA Education 21%, n = 8/38, p = 0.794). Statistically significant differences existed across mood (MBSR 26%, n = 11/43 vs. HA Education 8%, n = 3/38; p = 0.043). No differences were seen across guilt (MBSR 16%, n = 7/43 vs. HA education 24%, n = 9/38, p = 0.419); potential differences existed across depression (MBSR 14%, n = 6/43 vs. HA Education 3%, n = 1/38, p = 0.114)

DISCUSSION

Despite being treated with acute and/or prophylactic medications, most participants in this study reported migraine had a negative impact on overall life and emotional health. Specific domains of life were impacted, including ictal and interictal cognitive functioning and well-being. Impact on career was found to be multifaceted, with roles, responsibilities, and relationships in addition to employment status being impacted by migraine, in addition to family and social dynamics. Furthermore, the impact on emotional health extended beyond the well-described comorbidities of depression and/or anxiety with migraine.^15,17 For example, reports of isolation, anger, frustration, and guilt were more prominent in interviews than was formal depression. Participants frequently endorsed anticipatory anxiety, fear of next migraine attack, and internal and external stigma. Altogether, these results extend the work from other studies demonstrating that migraine has a much wider impact on disease burden than what is commonly measured on validated assessments used to collect patient-reported outcomes.^{1–3,5–10,25,33,34}

Guilt was an overarching theme that emerged from these data. Participants reporting feeling guilty about both time away from work, family, and social engagements and the additional burden on friends, family, and colleagues due to inability to fulfill and excel in their responsibilities. One patient reported, “I’d put a lot of blame on myself and get frustrated that I had a migraine and angry at myself that I couldn’t get rid of it. [I blame myself] because I have a rotten brain. Why do I have a defective brain? I just blame myself. It’s my brain so it’s my fault” (Table 5). Guilt’s role in migraine has been recognized recently. For example, data from 13,064 participants in the Chronic Migraine Epidemiology and Outcomes (CaMEO) study showed the significant family burden of migraine, with guilt playing a role.⁹ A recent qualitative study evaluating the impact of migraine in women (n = 10) found similar themes and subthemes as our findings.³⁵ Specifically, their themes (and subthemes) included the following: (a) being besieged by an attack (subthemes: being temporarily incapacitated; feeling involuntarily isolated from life); (b) struggling in life characterized by uncertainty (subthemes: being in a state of constant readiness; worrying about the use of medication); and (c) living with an invisible disorder (subthemes: living with the fear of not being believed; struggling to avoid being doubted). Their findings highlighting guilt, isolation, and external and internal stigma of living with migraine further validate these themes from our data. Assessments and qualitative studies need to investigate further the roles of guilt, stigma, and isolation in migraine.

Many participants lamented how the unpredictability of attacks is a major contributor to migraine’s impact on quality of life, creating a pattern of unwelcome unreliability. For this reason, the fear-avoidance model may have more utility in migraine than in other chronic pain conditions whose symptom courses are more predictable or even constant.³⁶ In fact, results from the current study found that the impact of migraine had features similar to panic disorder, such as anticipatory anxiety. Although panic attacks themselves are uncomfortable, the disease takes on a much more profound impact on quality of life when anticipatory anxiety, or the fear of future attacks and subsequent avoidance of situations thought to trigger attacks, becomes a prominent symptom. Similarly, the migraine attack is only one contributor to the impact on quality of life with interictal anticipatory anxiety and concomitant life restriction having critical contributions to quality of life impact. In this study, participants described altering their lives in anticipation of a migraine attack in ways that impacted multiple areas of quality of life. Avoidance behaviors were described as taking people away from valued life activities and social activities. In turn, participants described these life restrictions as impacting their emotional health including increasing the initial anticipatory anxiety and catastrophizing. Both fear of the next migraine attack and fear of triggers were described.

Patients reported a wide-ranging impact of migraine on their social relationships. Migraine was described as affecting relationships with friends, family members, and colleagues at work. Improvements in migraine symptoms may positively influence a wide web of relationships. Improving knowledge and awareness of migraine in the general public could be used to better prepare friends, family, and coworkers to support the migraine management efforts of people with migraine.³⁷ This could reduce the guilt, stigma, and isolation surrounding migraine.^34,38 Even in this study, many participants in the HA Education arm described wanting their family and friends to have an educational class to “better understand” migraine and be able to better empathize, as stigmatizing attitudes may be greatest in those who are closest to people with migraine.³⁹ Given the high prevalence of migraine, broad public health migraine educational initiatives and advocacy efforts may help target these factors.^38,40–42

Our study underscores the impact of migraine on cognitive function, with participants describing cognitive interference and difficulty with both concentration and communication. One participant reported that during a migraine attack she ends up “sounding like a blooming idiot.” Decreases in cognitive function negatively affect work life, both in the inability to effectively communicate with colleagues and reduced productivity resulting in “presenteeism” (being physically present but unproductive). Difficulty communicating also affects social relationships. Furthermore, participants reported mood changes and irritability with attacks. Although being in pain may contribute to cognitive and mood changes, the pathophysiology of migraine may also play a role. The cognitive and mood effects of migraine and resulting disease burden need additional attention to elucidate the mechanisms behind these changes.

Together, these results highlight the importance of developing standardized, validated measures to capture a fuller picture of the impact of migraine on patients’ lives. Pain-related anxiety significantly impacts disability,⁴³ and many of the questionnaires assessing such impact (e.g., Pain Anxiety Symptoms Scale and Pain Sensitivity Questionnaire) were developed to assess patients with chronic pain, but many items are not appropriate for those with migraine. Additional measures, such as the recently developed Impact of Migraine on Partners and Adolescent Children, IMPAC scale,⁸ are needed to fully identify and track the full scope of the impact of migraine. Measures assessing the impact of migraine on quality of life should emphasize the effects on family, social, occupational, and emotional well-being noted in this study. Further understanding of the impact of stigma on the lived experience of migraine is also critical to ensure that patients do not feel judged for their migraine-induced debilitations or lessen their self-worth due to their disease.^34,37 As reflected by recent expert international consensus⁴⁴ and systematic reviews,^45,46 clinical trials should always include outcomes that reflect the full impact of migraine on patient lives through assessing both disability and quality of life. Both disability and quality of life are worthy of being a primary outcome, including for pharmacological treatments as well as for implementation science and nonpharmacological treatment approaches.^20,44,47

Beyond improving clinical research, studies such as this one can improve clinical management through tailoring individual treatment approaches to address the burden of migraine on each patient’s life. Recognizing, addressing, and teaching individuals how to manage fear of attacks, stigma, guilt, and frustration are important to optimize migraine management.^34,44 Given the emotional impact of migraine combined with the isolation inherent in a chronic neurological disease with debilitating attacks of severe pain and sensory hypersensitivities, providing patients with the opportunity to connect with others similarly affected may have a profound therapeutic effect and help target stigma and isolation.^34,42 Given the current social distancing measures of the COVID-19 pandemic, online support groups⁴⁸ and advocacy organizations connecting migraine patients with each other may be especially powerful.

The key question in the interview guide that helped elucidate these results was, “How does migraine impact your life?” This simple, open-ended question has been demonstrated to provide patients with the opportunity to convey their full experiences with migraine, yielding detailed responses and personal narratives that provide a more compelling understanding of disease burden and disability.^49,50 Providers often underestimate their patient’s impairment due to migraine.^50,51 Providers who receive information on headache-related impairment from patients are more likely to prescribe migraine-specific medications and have more aggressive follow-up.^49–51 A strong predictor of good headache outcome at 1 year is patients’ belief that they have discussed their headache fully with an informed physician at the first visit.⁵² Open-ended questions do not require significantly more time with patients^49,50,53 but are linked to higher levels of both patient and provider satisfaction and may increase the chance of providers offering effective treatment approaches^49,50 A simple educational program to teach providers the importance and techniques of open-ended questions can improve alignment between headache patients’ experiences and providers’ understanding, overall improving both patient and provider satisfaction.^49,50

STRENGTHS AND LIMITATIONS

This study has several important strengths, including having a large sample size of 81 qualitative interviews of patients with migraine diagnosed by United Council for Neurologic Subspecialties-certified headache specialists using International Classification of Headache Disorders diagnostic criteria. A similar interview guide was used for both clinical trials conducted in two separate cities, capturing patients with migraine across time and location. Rigorous qualitative methodology was used that appropriately captured, organized, and analyzed the data. The responses are provided in the patients’ voices, which offers a clear articulation of the full impact of migraine in ways that can be used to develop improved assessments for patient-reported outcomes. Although the original intent of the qualitative interviews was to learn how participants responded to the interventions being studied in the context of MBSR clinical trials, asking patients how migraine affects their lives resulted in rich descriptions of disease burden. The use of open-ended questions and lack of directed questions provided a unique window into patient perspectives, highlighting what mattered most to them. The resulting quantitative data demonstrating the frequency of codes that fit within a given theme in response to such open-ended questions give a unique insight into the factors that evoke the greatest burden. Such spontaneous reporting may have captured areas of greatest concern for the patient.

Limitations of the study included that we did not undertake questions directed to specific domains because it was not the original intent of the interviews to capture migraine’s impact on life. For example, had we asked about cognitive impairment during attacks, we may have found that it occurs with greater frequency than identified herein by spontaneous report. Moreover, specifically querying an area could lead to overreporting related to acquiescent responding.⁵⁴ Baseline characteristics of participants in both studies were predominantly white educated women, thus a nondiverse patient population. Participants in the two trials had either 4–14 or 4–20 migraine days/month and were treatment-seeking; therefore, the results reflect patients with this disease burden. Selection bias may have played a role in the themes that emerged as these participants were willing to participate in a nonpharmacological study, which may decrease generalizability. For example, most participants were refractory to typical drug treatment approaches, possibly leading them to be disillusioned by their experiences living with migraine. However, it is known that response to medication therapy for migraine is variable and often incomplete from a patient’s perspective.^55–57

Because the interviews were conducted after the interventions (MBSR or HA Education), the interventions themselves may have played a role in participants’ perceptions or awareness of their migraine experiences. We hypothesized that learning mindfulness may have increased awareness on the impact of migraine on participants’ lives. Moreover, many of the topics of discussion in the HA Education curriculum included migraine’s impact on various aspects of life to suggest that participants in the HA Education group may have given this more thoughtful reflection during the intervention. However, our magnitude coding demonstrated that most themes were similarly represented across both interventions. Of note, the emotional health codes were represented more commonly in those who had participated in MBSR compared with HA Education. This is particularly interesting given that our quantitative RCT results demonstrated that MBSR improved multiple measures of well-being more than HA Education (depression scores, quality of life, headache-related disability, self-efficacy, pain catastrophizing).²⁰ However, mindfulness teaches individuals to pay attention to the present moment in a way that may increase their awareness of how migraine impacts quality of life, while minimizing the associated emotional reactivity. Participants may also have been tuned into the changes in emotional health from the MBSR intervention, as many of the quotations were in the past tense and described their experiences with migraine’s impact on emotional health prior to the study. Given the small sizes limit our ability to make broad interpretations of these group comparisons, these differences highlight future areas for continued research. Finally, although the results are categorized into distinct themes, overlap and potential interdependence exist between themes, and further research could help clarify potential causality.

Of note, migraine is a disease with episodic attacks of headache and additional associated symptoms. Although many patients used the term “migraines” to describe their experiences, we converted “migraines” to “migraine attacks” throughout in an effort to highlight this important distinction.

CONCLUSION

Migraine contributes to tremendous disease burden with paramount impact on numerous domains (family, social, work/career) affecting quality of life. Migraine affects emotional health well beyond depression and anxiety, with resulting frustration, anger, guilt, and stigma. Not only is a migraine episode highly debilitating, the fear of migraine onset often creates behaviors in anticipation of a migraine attack, amplifying migraine’s effects with increased anticipatory anxiety, pain catastrophizing, isolation, and hopelessness. Difficulty concentrating, communicating, and experiencing irritability are disabling ictal symptoms that affect functionality beyond pain and the typical associated migraine symptoms (e.g., photophobia, phonophobia, nausea, vomiting). The rich insights gained from this qualitative research emphasize the importance of understanding the full impact of migraine to capture, measure, and treat the all-encompassing effects of migraine on patients’ lives. Although headache frequency and intensity play a major role in migraine, learning from patients themselves about the deep impact of migraine on their lives ensures that clinicians and researchers are able to effectively target and treat what is most important to those living with migraine.

Abbreviations:

CaMEO

Chronic Migraine Epidemiology and Outcomes

IMPAC

Impact of Migraine on Partners and Adolescent Children

IRB

Institutional Review Board

HA

Headache Education

HIT-6

Headache Impact Test-6

MA

Massachusetts

MBSR

Mindfulness Based Stress Reduction

MIDAS

Migraine Disability Assessment Test

NC

North Carolina

RCTs

randomized controlled trials

SD

Standard Deviation

UCNS

United Council for Neurologic Subspecialties