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To assess the impact of migraine on family members, activities, and relationships from the perspectives of the person with migraine and his or her spouse/domestic partner.
Patients and Methods
The Chronic Migraine Epidemiology and Outcomes (CaMEO) study is a longitudinal, Web-based study conducted from September 2012 to November 2013. Quota sampling from an online panel identified respondents who met modified International Classification of Headache Disorders, version 3 beta migraine criteria. The Family Burden Module included 24 items covering 6 domains. Findings for respondents with episodic migraine (EM) and chronic migraine (CM) are presented for both the affected individuals and their partners.
Results
Among 13,064 Family Burden Module respondents (65.7% response rate), there were 4022 migraineur-spouse dyads, including 2275 dyads with children. Burden increased with headache frequency across all 6 domains. People with migraine reported higher family burden due to migraine than did their spouse/partner. Reduced participation in family activities due to migraine was reported 1 or more times a month among 48.2% to 57.4% of migraineurs, depending on headache frequency (days/month). Many (low-frequency to high-frequency EM, 24.4%-40.4%; CM, 43.9%) perceived that their spouse/partner did not believe the severity/impact of their headaches. One-third of migraineurs stated that they worried about long-term financial security for themselves or their family because of their headaches. Many migraineurs felt they would be better parents without headaches (low-frequency to high-frequency EM, 29.9%-58.0%; CM, 71.7%).
Conclusion
This analysis quantified the pervasive burden of migraine on the family, highlighting the impact on family activities and relationships. Not surprisingly, the impact was greatest in families of people with CM.
Migraine is associated with substantial personal burden resulting from headache-related disability, high rates of comorbidities, and reduced health-related quality of life, as well as direct and indirect costs.
Cost of health care among patients with chronic and episodic migraine in Canada and the USA: results from the International Burden of Migraine Study (IBMS).
confirmed these findings on the basis of reports from 389 people with migraine and 100 of their spouses/domestic partners. In another study of 866 people with migraine and 162 people living with or related to people with migraine,
cohabitating family members reported an adverse effect of migraine on family life and social/leisure activities. To date, no studies have reported the impact of chronic migraine (CM) on the family.
Chronic illness influences psychological health, well-being, activity level, and financial stability of individual family members and entire families.
Development of a measure of the impact of chronic parental illness on adolescent and adult children. The parental illness impact scale (Parkinson's disease).
Literature shows that cancer, dementia, irritable bowel disease, Parkinson disease, asthma, and mental illness are all associated with elevated family burden. For example, spouses and children of people with dementia reported increased anxiety, depression, and physical symptoms and decreased well-being.
To quantify this impact, disease-specific family burden instruments have been developed (eg, The Parental Illness Impact Scale for use in Parkinson disease).
Development of a measure of the impact of chronic parental illness on adolescent and adult children. The parental illness impact scale (Parkinson's disease).
The Chronic Migraine Epidemiology and Outcomes (CaMEO) study is a large Web-panel study that gathered data on the perceived impact of migraine on migraineurs, their spouses (including live-in domestic partners), and their children (ages 13-29 years). The age range from 13 to 29 years was selected because a lower boundary of age 13 years was considered appropriate to read and comprehend a questionnaire relating to family burden and an upper boundary of age 29 years permitted the assessment of differences in impact in younger versus older teens as well as versus young adults, which included those up to the age of 29 years. The CaMEO Family Burden Module (FBM) captured missed family events, household responsibilities, and emotional and interpersonal reactions, among other constructs.
Buse DC, Dodick DW, Manack Adams A. Migraineur perception regarding family burden from chronic migraine: results of the CaMEO (Chronic Migraine Epidemiology & Outcomes) study. Paper presented at: American Academy of Neurology (AAN) Annual Meeting; April 18-25, 2015; Washington, DC. Poster P5.039.
This analysis provides detailed supportive and novel information on the impact of migraine on the family from the perspective of migraineurs and their spouse, as well as a novel ability to stratify the rates of perceived family burden by the frequency of headaches for episodic migraine (EM) and CM.
Patients and Methods
Study Design
The CaMEO study was a longitudinal Web-based study with cross-sectional modules designed to characterize multiple aspects of EM and CM over the course of a year. Participants were recruited using quota sampling from a Web panel (Research Now) that has 2.4 million active US members.
The recruiting and screening phases occurred from September 2012 through October 2012. Of 489,537 invitees, 80,783 (16.5%) responded and 58,418 (72.3%) of those who responded provided usable data. There were 16,789 participants who met migraine criteria using the American Migraine Study/American Migraine Prevalence and Prevention (AMPP) study diagnostic module
). An additional 3219 individuals responded to the baseline screening survey after the survey was closed, and were thus considered “overquota.” These respondents met the same inclusion criteria, but were not included in the longitudinal CaMEO study cohort because of their delayed response; they were, however, included in the FBM to optimize sample size (for details, see Adams et al
). Because overall response rates were low, a follow-up survey was sent to screening survey nonrespondents; results concluded that the characteristics of initial screening survey respondents and nonrespondents were similar.
Here, analyses from the FBM evaluated headache-related impact on the family using a cross-sectional survey administered to participants and their spouse (ie, spouse or live-in domestic partner).
The study was approved by the institutional review board of the Albert Einstein College of Medicine, which waived written consent for survey volunteers.
FigureFBM flow diagram. CaMEO = Chronic Migraine Epidemiology and Outcomes; CM = chronic migraine; EM = episodic migraine; FBM = Family Burden Module; ICHD-3b = International Classification of Headache Disorders, version 3 beta. aN=22,365 respondents either abandoned the survey (<20% of the survey was complete and headache status could not be identified), were overquota, or had unusable data, which left 58,418 with usable returns. bBaseline sampling was quota based, with the limit for the migraine sample defined as n=17,000. Respondents who replied after quotas had been reached, but before initiation of the next sampling wave, were deemed overquota and not included. Of the quota sample, n=16,789 met the inclusion criteria: agreed to participate, screened positive for modified ICHD-3b migraine, completed initial surveys in a reasonable time (≥10 minutes), were 18 years old, were not missing headache frequency data, and reported consistent age and sex (of the 17,000 people in the migraine sample, as defined by the quotas, 211 [1.2%] were removed during data cleaning). Migraine case rate was 28.7% (16,789/58,418). cBecause of the risk of potentially low response rates for the FBM, respondents who were considered to be overquota for the CaMEO study were resampled for the FBM only. Data from these overquota respondents were not used for any other module.
Headache Classification Committee of the International Headache Society (HIS) The International Classification of Headache Disorders, 3rd edition (beta version).
The study definition differs from ICHD-3b criteria in that criteria A (≥5 lifetime migraine events) and B (duration of attack untreated from 4 to 72 hours) were not assessed. Chronic migraine was defined as respondents with 15 or more headache days/month averaged over the past 3 months, which did not include confirmation of 8 of the headache days being migraine.
Qualified respondents were asked to identify their spouse who had cohabitated with the migraineur for more than 2 months (identified as “currently in a relationship with a spouse, partner, or significant other”).
A link to the spouse survey was provided to the person with migraine, who was requested to share the link with their spouse. Of 8163 identified spouses, 4022 (49.3% completion rate) returned completed surveys. The spouse's headache status was not assessed.
Headache-Day Frequency Subgroups
Headache-day frequency was determined by calculating the 30-day average on the basis of the number of reported headache days in the past 90 days. Headache-day frequency was subdivided into 4 categories: (1) low-frequency episodic migraine (LFEM; 0-4 headache days/month), (2) moderate-frequency episodic migraine (MFEM; 5-9 headache days/month), (3) high-frequency episodic migraine (HFEM; 10-14 headache days/month), and (4) CM (≥15 headache days/month). Data were pooled across all frequency groups to form an “overall migraine” group.
CaMEO Study FBM Development and Analyses
The CaMEO study FBM survey items were developed through a multistage process, including literature review, expert clinical consultation, and focus groups with people with migraine and spouses and children of people with migraine. A total of 59 candidate items were developed for inclusion in the FBM. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) models with weighted least squares with mean- and variance-adjusted chi-square fit statistics
were used to identify naturally occurring domains of items measuring migraine impact on the family unit.
The initial EFA model assessed the dimensionality of the 59 items using data from the 4022 migraineurs with spouses. On the basis of psychometric analyses and clinical review, we selected 36 items, encompassing 6 domains of family burden: (1) Reduced Participation or Enjoyment in Family Activities, (2) Missed/Canceled Events, (3) Spouse Interactions, (4) Financial Impact, (5) Effect of Parent-Child Interactions on the Child(ren), and (6) Effect of Parent-Child Interactions on the Migraineur. For both spouse- and child-focused solutions, CFA modeling results identified 4 constructs or factors using items from the above domains; the spouse solution included 19 items from 4 of the domains listed above, and the child solution contained 24 items from 4 of the domains listed above. Some items in domains 1 and 2 were used in both the spouse and child solutions. Further details are provided in Supplemental Materials available online at http://www.mayoclinicproceedings.org.
Items in the Reduced Participation or Enjoyment of Family Activities and Missed/Canceled Events domains had time frames of the past 30 days (response options, 0 to ≥30 times) and past year (response options, 0 to ≥52 times), and a “Does not apply to me” response option (not scored). Responses are reported as the proportion of the group endorsing reduced participation/enjoyment or missed/canceled events 1 or more or 4 or more times in the time frame of interest. The Spouse Interactions, Financial Impact, and Parent-Child Interactions domains had 4-category Likert-type response options (1 = Disagree Completely, 2 = Disagree Somewhat, 3 = Agree Somewhat, 4 = Agree Completely).
Descriptive statistics were calculated for the overall migraine sample and by migraine frequency (LFEM, MFEM, HFEM, and CM).
Results
Participant Characteristics
All available migraineurs from sample screening (n=16,672) were invited to complete the FBM in January 2013. An additional 3219 respondents who were considered overquota, but otherwise qualified for the CaMEO study, were also invited to complete the FBM. A total of 13,064 migraineurs (65.7% response rate) and 4022 spouses provided FBM data, resulting in 4022 migraineur-spouse dyads, of whom 2275 had children; 1350 migraineurs had children but no spouse (ie, single). Participants' sociodemographic characteristics were generally similar across groups (Table 1).
Domain 1: Reduced Participation or Enjoyment in Family Activities due to Migraineur Headache
Approximately half of those with migraine reported reduced participation in family activities 1 or more times in the past month (range, 48.2%-57.4% stratified by headache-day/month frequency; Table 2). The percentage endorsing reduced participation in 1 or more activity or instance increased as headache-day frequency increased, with more than 75% of participants with CM endorsing 1 or more items. Spouses reported a similar pattern but with generally lower rates, except for items 5 (“One-on-one time with spouse was disrupted”) and 7 (“Spouse had to take over migraineur's share of housework”), which had similar endorsement rates by migraineurs and spouses.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
37.1
62.2
69.1
76.1
48.2
19.5
38.1
44.4
53.1
27.9
3. Involvement/enjoyment in family activity was significantly reduced
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
39.9
70.7
79.1
85.9
53.5
23.2
46.3
52.4
62.3
33.6
4. Participation/enjoyment in an important celebration/event was significantly reduced (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
40.3
67.2
71.3
76.8
51.4
43.7
68.5
68.9
77.2
53.6
6. Enjoyment of time spent with spouse was significantly reduced
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
43.9
76.3
82.9
86.1
57.4
40.8
65.1
70.7
76.5
51.1
7. Spouse had to take over migraineur's share of housework
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
All items asked about self-perception, self-missed events, or self-experience except items 7, 10-15, and 19; these items focused on either the migraineur or the spouse as the target.
39.3
67.4
70.7
77.7
50.8
41.3
62.4
67.6
73.4
50.4
Domain 1
Reduced participation by the migraineur (≥4 times in past 30 d), %
Reduced participation by the spouse (≥4 times in past 30 d), %
1. Did not participate in family activities at home
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
4.8
18.9
33.7
47.8
14.0
3.6
12.9
23.9
30.1
9.3
3. Involvement/enjoyment in family activity was significantly reduced
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
6.4
31.0
48.1
63.3
20.2
5.3
16.6
22.2
37.4
11.9
4. Participation/enjoyment in an important celebration/event was significantly reduced (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
4.6
23.8
33.3
52.0
15.3
7.4
22.4
34.8
46.8
16.2
6. Enjoyment of time spent with spouse was significantly reduced
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
6.3
28.1
45.2
61.2
19.1
8.5
25.4
38.0
53.0
18.4
7. Spouse had to take over migraineur's share of housework
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
All items asked about self-perception, self-missed events, or self-experience except items 7, 10-15, and 19; these items focused on either the migraineur or the spouse as the target.
5.7
23.7
36.5
52.6
16.0
7.6
23.0
32.4
46.6
16.2
Domain 2
Missed/canceled events by the migraineur (≥1 time in past year), %
Missed/canceled events by the spouse (≥1 time in past year), %
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
10.7
27.4
33.2
40.8
18.3
10.3
20.6
26.1
26.4
14.8
9. Missed a wedding, graduation, retirement celebration, or other important event
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
10.3
24.5
24.6
39.0
16.7
8.0
17.1
25.5
29.0
12.9
10. Canceled an important celebration in your home because of migraineur's headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
All items asked about self-perception, self-missed events, or self-experience except items 7, 10-15, and 19; these items focused on either the migraineur or the spouse as the target.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
All items asked about self-perception, self-missed events, or self-experience except items 7, 10-15, and 19; these items focused on either the migraineur or the spouse as the target.
24.4
37.0
40.4
43.9
29.8
14.0
17.8
22.6
22.1
16.1
12. Spouse gets upset or angry at migraineur for having headaches
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
All items asked about self-perception, self-missed events, or self-experience except items 7, 10-15, and 19; these items focused on either the migraineur or the spouse as the target.
9.4
19.6
22.6
27.5
14.0
12.1
22.8
25.0
26.7
16.4
13. Spouse avoids migraineur at time because of headaches
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
All items asked about self-perception, self-missed events, or self-experience except items 7, 10-15, and 19; these items focused on either the migraineur or the spouse as the target.
17.2
31.6
32.1
39.5
23.1
27.6
33.9
36.8
45.5
31.2
14. Spouse resents having to do everything when migraineur has a headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
All items asked about self-perception, self-missed events, or self-experience except items 7, 10-15, and 19; these items focused on either the migraineur or the spouse as the target.
12.8
22.6
24.4
28.8
17.0
10.6
17.0
15.7
23.4
13.4
15. Migraineur's headaches cause stress in relationship even when migraineur does not have a headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
All items asked about self-perception, self-missed events, or self-experience except items 7, 10-15, and 19; these items focused on either the migraineur or the spouse as the target.
9.9
20.7
26.0
37.4
15.7
9.7
20.1
21.5
30.7
14.5
Domain 4
Financial impact on migraineur (agree somewhat/completely), %
Financial impact on spouse (agree somewhat/completely), %
16. I worry more about covering the household expenses
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
22.0
38.7
42.3
54.9
29.7
13.2
21.9
24.0
33.8
17.6
17. I worry about having long-term financial security for me/my family
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
25.1
42.7
44.3
59.5
33.1
15.8
26.3
29.6
40.4
21.1
18. (If employed) I worry about losing my job or being laid off
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
17.1
31.3
39.3
44.8
23.8
9.4
15.6
15.1
25.0
12.5
19. It has been harder for the migraineur's spouse to advance in his/her job
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
All items asked about self-perception, self-missed events, or self-experience except items 7, 10-15, and 19; these items focused on either the migraineur or the spouse as the target.
b Migraineur headache frequency rates were LFEM = 64.6%, MFEM = 18.3%, HFEM = 7.2%, and CM = 9.9%.
c The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, interaction burden, and financial impact due to migraineur's headaches.
d All items asked about self-perception, self-missed events, or self-experience except items 7, 10-15, and 19; these items focused on either the migraineur or the spouse as the target.
Migraineur-spouse dyads with children also demonstrated a trend of increasing endorsement rates as headache-day frequency increased (Table 3). Across all analyses, one of the highest-impact items was Item 3 (“Involvement or enjoyment in family activity was significantly reduced”), with more than 53% of migraineurs (EM subgroups [LFEM-HFEM] range, 41.6%-78.9%; CM, 87.9%) endorsing this item at least once in the past 30 days. In line with the general trend, endorsement for this item was lower among spouses (EM subgroups, 25.0%-54.2%; CM, 64.7%). Reduced enjoyment/involvement in children's activities due to the migraineur's headache was also noted for 77.5% of people with CM and 30.2% to 64.8% of people with EM. In addition, it was frequently perceived that the migraineur's responsibilities fell to the spouse and children because of headache (items 6 and 7, Table 3). Of note, among migraineurs with children, migraineurs without spouses reported that their children had to take over their responsibilities because of headache more often than migraineurs with spouses (47.5% vs 37.0%, respectively, Table 4), suggesting that children are more affected in families where there is no spouse and that perhaps a spouse could have assisted if one were present.
Table 3Migraineur-Spouse Dyads With Child(ren): Item Responses (n=2275 Dyads)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
37.4
62.6
70.2
77.4
50.0
20.4
38.5
47.8
55.8
30.1
3. Involvement/enjoyment in family activity was significantly reduced
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
41.6
73.4
78.9
87.9
56.7
25.0
49.9
54.2
64.7
37.0
4. Participation/enjoyment in an important celebration/event was significantly reduced (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
33.1
65.8
68.3
76.8
47.7
19.6
36.6
44.1
50.7
28.4
5. Unable to spend time with your child(ren) when they needed your help, such as with homework, or to talk about a concern they had
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
32.4
57.8
62.7
69.8
44.3
12.2
25.1
31.1
29.4
18.0
6. Spouse had to take over the parenting responsibilities such as disciplining, feeding, or carpooling
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
35.5
59.1
66.5
74.1
47.1
29.9
50.4
59.5
67.8
40.7
7. Child had to take care of things you normally do for them
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
26.5
48.0
51.0
64.2
37.0
24.4
45.8
49.4
56.7
34.2
8. Involvement or enjoyment of your child(ren)'s activities significantly reduced because of migraineur's headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
30.2
59.5
64.8
77.5
44.5
13.3
29.7
39.7
41.0
21.6
9. Ability to properly “parent” your child(ren) significantly reduced because of migraineur's headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
25.4
49.2
47.4
65.4
36.5
10.4
23.2
27.5
30.9
16.5
Domain 1
Reduced participation by the migraineur (≥4 times in past 30 d), %
Reduced participation by the spouse (≥4 times in past 30 d), %
1. Did not participate in family activities at home
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
5.1
20.8
34.8
47.4
15.8
3.9
13.8
25.2
31.8
10.7
3. Involvement/enjoyment in family activity was significantly reduced
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
7.7
34.5
48.5
65.3
23.5
6.2
18.3
24.7
41.6
14.3
4. Participation/enjoyment in an important celebration/event was significantly reduced (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
8.3
31.4
39.6
56.5
21.3
5.5
14.8
21.1
31.7
11.5
5. Unable to spend time with your child(ren) when they needed your help, such as with homework, or to talk about a concern they had
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
5.3
22.3
34.8
48.2
16.1
3.1
9.3
13.5
17.1
6.6
6. Spouse had to take over the parenting responsibilities such as disciplining, feeding, or carpooling
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
4.9
18.8
31.7
46.8
14.5
6.7
14.9
27.2
41.7
13.9
7. Child had to take care of things you normally do for them
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
3.8
14.9
23.2
31.9
10.7
4.1
13.4
22.1
29.9
10.2
8. Involvement or enjoyment of your child(ren)'s activities significantly reduced because of migraineur's headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
4.3
23.9
30.9
49.1
15.7
3.0
11.6
15.2
22.5
7.8
9. Ability to properly “parent” your child(ren) significantly reduced because of migraineur's headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
4.4
19.4
25.3
44.4
13.7
2.7
7.9
14.1
19.6
6.4
Domain 2
Missed/canceled events by the migraineur (≥1 time in past year), %
Missed/canceled events by the spouse (≥1 time in past year), %
10. Missed a holiday or religious celebration (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
10.0
26.8
33.8
38.9
18.4
9.6
19.6
28.2
24.9
14.8
11. Missed a wedding, graduation, retirement celebration, or other event important to you (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
9.7
26.1
24.1
37.0
17.0
7.3
19.7
27.5
29.2
13.7
12. Canceled an important celebration in your home because of a headache (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
8.8
25.2
29.9
39.1
17.0
9.2
23.5
28.3
33.8
16.2
13. Child missed his/her game, band concert, birthday party, sleepover, dance class, or other scheduled activity (past 30 d)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
8.5
22.7
24.3
33.0
15.2
8.3
17.7
26.8
27.5
13.6
14. Child missed a day of school, arrived late, or got picked up late (past 30 d)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
8.5
22.6
23.1
33.9
15.2
7.2
18.2
21.9
26.7
12.6
Domain 5
Effect of migraineur-child interactions on the child(ren) based on the migraineur perspective (agree somewhat/completely), %
Effect of migraineur-child interactions on the child(ren) based on the spouse perspective (agree somewhat/completely), %
15. Child(ren) get upset or angry because of migraineur's headaches
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
9.5
19.1
22.5
27.6
14.4
10.1
15.0
20.3
21.1
13.1
16. Child(ren) take advantage of migraineur when they have a headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
10.3
18.2
21.4
22.4
14.1
11.2
20.8
23.1
25.0
15.5
17. Child(ren)'s grades or academic achievement suffer because of migraineur's headaches
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
5.3
10.1
11.7
15.0
7.9
5.3
7.9
11.8
12.3
7.1
18. Because of migraineur's headaches, spouse is more demanding of child(ren)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
11.0
18.2
22.3
27.2
15.2
14.1
18.8
22.6
31.5
17.6
19. Migraineur's headaches cause conflict and arguments between spouse and child(ren)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
10.5
18.7
26.6
30.3
15.6
7.8
17.4
16.7
18.5
11.5
20. Migraineur's headaches cause stress with child(ren) even on days when migraineur does not have headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
7.8
15.0
20.2
30.0
12.7
7.1
12.3
16.1
22.2
10.5
Domain 6
Effect of migraineur-child interactions on the migraineur based on the migraineur perspective (agree somewhat/completely), %
Effect of migraineur-child interactions on the migraineur based on the spouse perspective (agree somewhat/completely), %
21. Child(ren) do not really understand migraineur's headaches and how much migraineur suffers
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
39.2
55.9
61.2
70.0
47.7
27.9
37.9
41.9
53.1
33.8
22. Because of migraineur's headaches, migraineur gets angry or annoyed more easily with child(ren)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
43.5
62.3
64.9
66.1
51.4
30.2
38.8
41.9
51.4
35.2
23. If migraineur didn't have headaches, migraineur would be a better parent
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
29.9
52.0
58.0
71.7
41.1
16.7
26.6
29.9
43.9
22.7
24. The noise of child(ren)'s usual activities can give migraineur a headache or make it worse
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
b Migraineur headache frequency rates were LFEM = 61.4%, MFEM = 19.2%, HFEM = 8.3%, and CM = 11.2%.
c The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
41.5
60.1
66.3
75.8
51.2
3. Involvement/enjoyment in family activity was significantly reduced
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
44.5
71.8
71.8
87.1
57.2
4. Participation/enjoyment in an important celebration/event was significantly reduced (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
44.2
67.5
73.7
78.0
55.3
5. Unable to spend time with your child(ren) when they needed your help, such as with homework, or to talk about a concern they had
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
34.4
52.0
57.7
71.5
44.4
6. Spouse had to take over the parenting responsibilities such as disciplining, feeding, or carpooling
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
–
–
–
–
–
7. Child had to take care of things you normally do for them
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
38.7
56.9
56.1
71.9
47.5
8. Involvement or enjoyment of your child(ren)'s activities significantly reduced because of migraineur's headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
34.2
58.5
60.6
75.0
46.1
9. Ability to properly “parent” your child(ren) significantly reduced because of migraineur's headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
26.4
43.3
50.0
64.2
36.2
Domain 1: Reduced participation by the migraineur (≥4 times in past 30 d), %
1. Did not participate in family activities at home
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
6.5
22.2
35.6
44.4
16.5
3. Involvement/enjoyment in family activity was significantly reduced
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
9.2
32.1
45.3
67.4
23.8
4. Participation/enjoyment in an important celebration/event was significantly reduced (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
11.0
31.1
38.6
59.1
22.9
5. Unable to spend time with your child(ren) when they needed your help, such as with homework, or to talk about a concern they had
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
6.4
21.1
25.2
43.8
15.5
6. Spouse had to take over the parenting responsibilities such as disciplining, feeding, or carpooling
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
–
–
–
–
–
7. Child had to take care of things you normally do for them
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
6.5
22.3
34.6
45.5
16.6
8. Involvement or enjoyment of your child(ren)'s activities significantly reduced because of migraineur's headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
6.8
21.5
32.1
48.4
17.0
9. Ability to properly “parent” your child(ren) significantly reduced because of migraineur's headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
6.4
17.6
25.0
46.7
14.9
Domain 2: Missed/canceled events by the migraineur (≥1 time in past year), %
10. Missed a holiday or religious celebration (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
12.7
31.2
30.8
45.0
21.5
11. Missed a wedding, graduation, retirement celebration, or other event important to you (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
12.2
25.0
25.3
36.2
18.3
12. Canceled an important celebration in your home because of a headache (past year)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
10.8
22.7
26.9
39.8
17.6
13. Child missed his/her game, band concert, birthday party, sleepover, dance class, or other scheduled activity (past 30 d)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
10.2
20.9
19.3
37.4
16.0
14. Child missed a day of school, arrived late, or got picked up late (past 30 d)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
12.7
21.1
30.8
38.7
18.9
Domain 5: Effect of migraineur-child interactions on the child(ren) (agree somewhat/completely), %
15. Child(ren) get upset or angry because of migraineur's headaches
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
12.1
10.9
18.6
30.3
14.4
16. Child(ren) take advantage of migraineur when they have a headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
12.2
16.2
14.0
27.7
14.7
17. Child(ren)'s grades or academic achievement suffer because of migraineur's headaches
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
7.6
7.5
7.0
16.2
8.4
18. Because of migraineur's headaches, spouse is more demanding of child(ren)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
–
–
–
–
–
19. Migraineur's headaches cause conflict and arguments between spouse and child(ren)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
–
–
–
–
–
20. Migraineur's headaches cause stress with child(ren) even on days when migraineur does not have headache
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
9.8
11.0
13.2
30.5
12.5
Domain 6: Effect of migraineur-child interactions on the migraineur (agree somewhat/completely), %
21. Child(ren) do not really understand migraineur's headaches and how much migraineur suffers
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
35.9
53.5
51.2
63.4
43.2
22. Because of migraineur's headaches, migraineur gets angry or annoyed more easily with my child(ren)
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
43.6
55.3
57.8
67.6
49.4
23. If migraineur didn't have headaches, migraineur would be a better parent
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
28.5
40.6
41.9
57.0
34.8
24. The noise of child(ren)'s usual activities can give migraineur a headache or make it worse
The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
b Migraineur headache frequency rates were LFEM = 63.0%, MFEM = 17.0%, HFEM = 9.6%, and CM = 10.5%.
c The number of applicable nonmissing responses varied by item and reporter. Items refer to reduced participation/enjoyment of activities, missed/canceled events, and parent-child interaction burden because of migraineur's headaches. All items asked about self-perception, self-missed events, or self-experience.
When reporting results by endorsement of 4 or more times in the past 30 days (approximately once per week), all migraineur-spouse dyads demonstrated impact due to headache; however, the difference between the headache-day frequency groups was more substantial (Table 2). Approximately half the respondents with CM reported reduced participation at this frequency (range, 42.9%-63.3%; Table 2). Migraineur-spouse dyads with children reported similar item endorsement rates (CM range, 31.9%-65.3%; Table 3). Involvement in or enjoyment of family activities was reduced 4 or more times per month for 65.3% of people with CM and for 41.6% of their spouses, and for 7.7% to 48.5% of people with EM and 6.2% to 24.7% of their spouses. Participation in or enjoyment of children's activities was reduced because of the migraineur's headache for 49.1% of those with CM and 22.5% of their spouses. Respondents perceived that the migraineur's responsibilities often fell to the spouse and child(ren) because of headache (items 6 and 7, Table 3). Nearly half (45.5%) of the single migraineurs with CM and 6.5% to 34.6% of migraineurs with EM reported that children had to take care of the migraineur's responsibilities at least once per week because of headache (Table 4).
Domain 2: Missed/Canceled Events due to Migraineur's Headache
As with domain 1 items, rates were highest among people with CM relative to EM and were higher among migraineurs than among spouses (Table 2). The children of chronic migraineur-spouse dyads were perceived as more greatly affected than those of episodic migraineur-spouse dyads; 33.9% of chronic migraineurs and 26.7% of their spouses reported that children missed a day of school or arrived/were picked up late in the preceding 30 days because of the migraineur's headaches (Table 3). Single migraineurs reported slightly higher rates across most missed/canceled event items (Table 4) than did migraineurs with spouses.
Domain 3: Spouse Interactions Related to Headache
Migraineurs and spouses reported, at roughly similar rates, that the migraineur's headaches cause stress in their relationship, even interictally (ie, when the migraineur does not actively have a headache; Table 2); 37.4% of people with CM and 9.9% to 26.0% of people with EM endorsed this item. Approximately one-third of spouses of people with EM and nearly half the spouses of those with CM reported avoiding the migraineur because of headaches. Many migraineurs (EM subgroups, 24.4%-40.4%; CM, 43.9%) perceived that their spouse did not believe the severity/impact of their headaches, although only 14.0% to 22.6% of spouses of those with EM and 22.1% of spouses of those with CM reported that they did not believe the severity/impact.
Domain 4: Perceived Financial Impact Related to Migraineur's Headache
One-third of migraineurs indicated that they worried about having long-term financial security because of their headaches. Spouses also worried about long-term security, with 21.1% reporting that they worried about long-term financial security because of their spouse's headaches. In addition, 29.7% of migraineurs reported that they worried about covering household expenses, and nearly a quarter of employed migraineurs worried about losing their job because of headache (Table 2).
Perceived financial impact increased with headache-day frequency. Among those with CM, nearly 60% indicated that they worried about having long-term financial security because of their headaches, 54.9% reported that they worried about covering household expenses, and 44.8% of those who were employed worried about losing their job because of headache.
Parent-Child Domains
Domain 5: Effect on the Child(ren) of Parent-Child Interactions Related to Migraineur's Headache
People with migraine and their spouses reported that headaches caused stress with child(ren), even on days without headache (migraineurs, 12.7%; spouses, 10.5%), with greater endorsement rates with higher-frequency headache (Table 3). Migraineurs (EM subgroups, 11.0%-22.3%; CM, 27.2%) and spouses (EM subgroups, 14.1%-22.6%; CM, 31.5%) reported that the spouse was more demanding of the child(ren) because of the migraineur's headaches. Migraineurs without spouses reported generally similar rates of burden in this domain (Table 4) as did those with spouses. Although endorsement rates were low, some migraineurs reported that their headaches affected their children's grades or academic achievement (EM subgroups, 5.3%-11.7%; CM, 15.0%; Table 3).
Domain 6: Effect on the Migraineur of Parent-Child Interactions Related to Migraineur's Headache
Many people with migraine felt that they would be better parents if they did not have headaches (EM subgroups, 29.9%-58.0%; CM, 71.7%). They also reported that noise from child(ren) can trigger/worsen a headache (Tables 3 and 4). In general, spouses reported less impact in this domain and migraineurs without spouses reported slightly lower rates of impact in this domain (Table 4) than did those with spouses (Table 3).
Discussion
These analyses highlight the substantial and pervasive impact of migraine on the family in 6 domains, as reported by both people with migraine and their spouse. Our results, similar to results of previous research in other chronic conditions, indicate that illness severity is correlated with family impact,
Not surprisingly, the perceived migraine impact on the family increased with increasing headache-day frequency and was greatest among those with CM. We found that certain situations created added burden for single migraineurs in instances in which a spouse could have helped assume responsibilities they were unable to perform, such as with parenting activities.
Reduced participation or enjoyment in activities with family due to the migraineur's headache was high, with generally similar item endorsement rates among migraineurs regardless of marital or parental status and generally lower endorsement rates on most items among spouses than among migraineurs. Responses to some items suggest that children of migraineurs without spouses may be more greatly affected than children of migraineurs with spouses. In previous reports, 76% to 81% of migraineurs delayed housecleaning/yard work, laundry/shopping, and cooking and 62% to 69% postponed activities with their spouse/child(ren).
In another study, 85% of migraineurs had at least a moderate reduction in their ability to perform household work because of migraine and 39% of their spouses had significantly reduced ability to do household work because of the migraineur's headaches.
reported that 39% of migraineurs canceled entertainment with family/friends/colleagues, 31% canceled birthday/anniversary celebrations, 22% canceled leisure trips, and 21% canceled holiday celebrations. An average of 1 or more days of missed family/social activities per month was reported by 19.3% of migraineurs in the study by Lipton et al.
Reduced participation and enjoyment of family activities was much more common than missed/canceled events, suggesting that perhaps migraineurs are able to attend but not fully participate or enjoy certain activities.
Respondents in this study reported high levels of distress within relationships due to headache (increasing with headache frequency), and migraineurs often misperceived the effect of headache on their spouse. Relationship impact with spouses was also reported by Smith
; migraineurs reported an effect on sexual relationships (24%), needing relationship counseling because of migraine (3%-6%), and separation/divorce because of migraine (5%). In the study by Lipton et al,
50% of migraineurs and 12% of spouses reported that the migraineur would be a better spouse if he or she did not have headaches.
Migraineurs reported greater concern about the financial impact of migraine than did their spouses, suggesting higher anxiety and different perceptions between migraineurs and spouses. Perceived financial impact of migraine was highest among those with CM and their spouses.
The perceived migraine burden on children was highest among those with CM and their spouses but was lower for spouses than for migraineurs in general. Migraineurs without spouses reported generally similar rates of impact in this domain as did those with spouses. An adverse effect on children was also reported by Smith
; children (age <12 years) of migraineurs reportedly kept quiet (66%); kept their distance (36%); and were confused (25%), hostile (17%), and afraid (12%).
Study respondents also reported that they believed they would be better parents if they did not have migraine. This is consistent with findings from Lipton et al,
where 43% of migraineurs believed they would be better parents if they did not have headaches.
This study has some notable limitations. As with other large epidemiologic studies, data were self-reported via the Internet, and no method of respondent verification was used (eg, in-person interview, chart review, or health care professional [HCP] interview). Survey items in the FBM had not been previously validated; however, we empirically identified domains of burden on the basis of EFA and CFA methods. Our definitions of migraine and CM did not conform exactly to ICHD-3b criteria because some criteria are extremely difficult to assess in a large-scale Web-based survey. The response rate to the core screening survey was relatively low, which is common in population and Web-based studies. To assess the potential effect of selection, a sample of screening survey nonrespondents was recontacted. Analyses showed that profiles of respondents and nonrespondents were not meaningfully different.
Buse DC, Lipton RB, Manack Adams A, Fanning KM, Reed ML. A comparison of the CaMEO (Chronic Migraine Epidemiology & Outcomes) study and AMPP (American Migraine Prevalence and Prevention) study: demographics and headache-related disability. Paper presented at: 57th Annual Scientific Meeting of the American Headache Society (AHS); June 18-21, 2015; Washington, DC.
These data demonstrated similar patterns of headache-day frequency and headache-related disability, as well as demographic distributions within EM and CM samples, implying that the CaMEO study sample was not prone to selection bias and was generalizable to the US migraine population.
Buse DC, Lipton RB, Manack Adams A, Fanning KM, Reed ML. A comparison of the CaMEO (Chronic Migraine Epidemiology & Outcomes) study and AMPP (American Migraine Prevalence and Prevention) study: demographics and headache-related disability. Paper presented at: 57th Annual Scientific Meeting of the American Headache Society (AHS); June 18-21, 2015; Washington, DC.
We did not assess the migraine or headache status of spouses or children, which may be a confounding variable in these analyses. Finally, the current article was largely a descriptive analysis aimed at providing information about the family impact associated with migraine; thus, inferential statistical tests were not conducted when comparing rates of endorsements between headache-day frequency groups.
This study also has a number of strengths. The FBM of the CaMEO study is among a very small number of population studies investigating the family burden of migraine. This was the largest study of family impact in people with migraine to date, assessing more than 4000 migraineur-spouse dyads (including 2275 dyads with children) and 1350 single migraineurs with children. Survey items were developed using a thorough process that included literature review, focus groups with migraineurs and their family members, and consultation with clinical and behavioral experts in the field of migraine. Family burden domains were identified through established psychometric methods. Results were stratified by headache-day frequency, providing data for the first time that suggest that family impact varies among individuals with EM and CM and their families.
Results demonstrated that migraine affected more than just the migraineur, extending to spouses and children. Migraine burden affected all domains assessed, leading to reduced participation or enjoyment of family activities, missed/canceled events, and negative effects on migraineur-spouse interactions, finances, and parent-child interactions. Migraine burden was especially pervasive, frequent, and persistent among families of chronic migraineurs, likely due to the higher headache-day frequency as well as the corresponding higher cost, comorbidities, and reduced quality of life that are present among those with CM.
The findings of this study have several clinical and practical implications. Migraine, and especially CM, is a debilitating chronic disease that can affect many aspects of family life, including roles, responsibilities, relationships, and communication. The results highlight the importance of assessing, documenting, and treating the impact that migraine has on the entire family. It is important that HCPs consider this impact while consulting with patients, and become more diligent in providing an accurate diagnosis and consideration of appropriate pharmacologic and nonpharmacologic (eg, cognitive-behavioral therapy, biofeedback, and relaxation training) interventions. Without a thorough understanding of the magnitude of CM burden, the necessity of interventions required to reduce impact may not be evident. To facilitate a comprehensive management strategy, HCPs should ask about family migraine impact and may want to include family members in discussions to educate and involve them in treatment planning. Family members may not realize that the challenges they face living with a family member with a chronic illness are common. Patients should be informed that there are effective treatments available that may help ease the effect on the family, and family members should be encouraged to remain supportive of patients seeking professional mental health care when these challenges become overwhelming. When a need is assessed, HCPs may refer the person with migraine, individual family members, or entire families for cognitive-behavioral therapy, family therapy, and/or psychiatric services, as necessary, to manage symptoms of anxiety and depression, address problems with family dynamics, and improve family communication.
Conclusion
These results, highlighting the extensive impact of migraine on the family, are intended to provide people with migraine, their families, HCPs, policymakers, and third-party payers, as well as those without any migraine experience, with the context necessary to understand the extent of burden experienced by migraine sufferers and their families. Quantifying family impact is an important first step toward mitigating burden. To this end, items from this survey are currently being used to create a scale to quantify the family burden of migraine. Although the current analysis focused on data from migraineurs and their spouses, future work will present data from the child's perspective.
Acknowledgments
Writing and editorial assistance was provided to the authors by Amanda M. Kelly, MPhil, MSHN, of Complete Healthcare Communications, LLC (Chadds Ford, PA) and Dana Franznick, PharmD, and was funded by Allergan plc (Dublin, Ireland). We thank James McGinley, PhD, of Vector Psychometric Group (Chapel Hill, NC), for his assistance with statistical analyses and intellectual input, and Valerie Marske, of Vedanta Research, for her assistance with Family Burden Module development.
Supplemental material can be found online at http://www.mayoclinicproceedings.org. Supplemental material attached to journal articles has not been edited, and the authors take responsibility for the accuracy of all data.
References
Buse D.C.
Lipton R.B.
Global perspectives on the burden of episodic and chronic migraine.
Cost of health care among patients with chronic and episodic migraine in Canada and the USA: results from the International Burden of Migraine Study (IBMS).
Development of a measure of the impact of chronic parental illness on adolescent and adult children. The parental illness impact scale (Parkinson's disease).
Buse DC, Dodick DW, Manack Adams A. Migraineur perception regarding family burden from chronic migraine: results of the CaMEO (Chronic Migraine Epidemiology & Outcomes) study. Paper presented at: American Academy of Neurology (AAN) Annual Meeting; April 18-25, 2015; Washington, DC. Poster P5.039.
Buse DC, Lipton RB, Manack Adams A, Fanning KM, Reed ML. A comparison of the CaMEO (Chronic Migraine Epidemiology & Outcomes) study and AMPP (American Migraine Prevalence and Prevention) study: demographics and headache-related disability. Paper presented at: 57th Annual Scientific Meeting of the American Headache Society (AHS); June 18-21, 2015; Washington, DC.
Grant Support: This study and analysis were sponsored by Allergan plc (Dublin, Ireland). The study sponsor was involved in the study design, data collection, data analysis, data interpretation, and writing of the article.
Potential Competing Interests: In the past 12 months, Dr Buse has received grant support and honoraria from Allergan, Avanir, Eli Lilly, the National Headache Foundation, and the American Headache Society. She is an employee of Montefiore Medical Center, which has received research support funded by Allergan, CoLucid, Endo Pharmaceuticals, GlaxoSmithKline, MAP Pharmaceuticals, Merck, NuPathe, Novartis, Ortho-McNeil, and Zogenix via grants to the National Headache Foundation. She is on the editorial board of the Journal of Headache and Pain, Pain Medicine News, and Pain Pathways magazine. In the past 12 months, Dr Scher has received honoraria from and is an advisory board member for Allergan, receives grant support from Congressionally Directed Medical Research Programs and Center for Neuroscience and Regenerative Medicine, and is on the editorial boards of Cephalalgia and Pain Medicine. The views expressed are those of the author(s) and do not necessarily reflect the official views of the Uniformed Services University of the Health Sciences or the Department of Defense. In the past 12 months, Dr Dodick has served on advisory boards and has consulted for Allergan, Amgen, Alder, CoLucid, Merck, ENeura, Eli Lilly & Company, Autonomic Technologies, Teva, Tonix, Trigemina, Novartis, Supernus, ScionNeurostim, and Boston Scientific. He has options in Xalan, Epien, and Second Opinion. He is on the board of directors of the King Devick Test. Within the past 12 months, Dr Dodick has received royalties, funding for travel, speaking, or editorial activities from the following: Healthlogix, Haymarket Media Group, Ltd, SAGE Publishing, Synergy, Allergan, Lippincott Williams & Wilkins, Oxford University Press, and Cambridge University Press; he serves on the editorial boards of The Neurologist, Lancet Neurology, and Postgraduate Medicine. He receives publishing royalties for Wolff's Headache, 8th edition (Oxford University Press, 2009) and Handbook of Headache (Cambridge University Press, 2010). Dr Reed is Managing Director of Vedanta Research, which has received research support and honoraria from Allergan, CoLucid, Dr Reddy's Laboratories, Endo Pharmaceuticals, GlaxoSmithKline, Merck & Co., Inc, NuPathe, Novartis, and Ortho-McNeil via grants to the National Headache Foundation. Directly, he has received funding from Allergan for work on the Chronic Migraine Epidemiology and Outcomes study. Dr Fanning is an employee of Vedanta Research, which has received research support and honoraria from Allergan, CoLucid, Dr Reddy's Laboratories, Endo Pharmaceuticals, GlaxoSmithKline, Merck & Co., Inc, NuPathe, Novartis, and Ortho-McNeil via grants to the National Headache Foundation. Dr Adams is a full-time employee of Allergan plc and owns stock in the company. Dr Lipton has received grant support from the National Institutes of Health, the National Headache Foundation, and the Migraine Research Fund. He serves as consultant, serves as an advisory board member, or has received honoraria from Alder, Allergan, the American Headache Society, Autonomic Technologies, Boston Scientific, Bristol Myers Squibb, Cognimed, CoLucid, Eli Lilly, eNeura Therapeutics, Merck, Novartis, Pfizer, and Teva, Inc. He receives royalties from Wolff's Headache, 8th Edition (Oxford University Press, 2009).
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