The Indirect Costs of Parenting with Migraine

New research published in Headache finds parental migraine can negatively impact adolescent children

Our primary approach to measuring the personal and societal burden of migraine is centered on its impact on patients: more than 90% of people with migraine say their disease interferes with their education, career and social activities. But the disease can also have a ripple effect when it interferes in family roles and responsibilities, especially for parents. Studies have shown that parents believe their children to be adversely affected by their migraine diagnosis, but new research published in Headache found that parental migraine negatively impacts adolescent children from the child’s perspective as well.

Adolescent Perspectives

A new study, titled Adolescent Perspectives on the Burden of a Parent’s Migraine: Results from the CaMEO Study¹ by Dawn Buse, Ph.D., Scott Powers, Ph.D., Amy Gelfand, M.D., Kristina Fanning, Ph.D., Michael Reed, Ph.D., Aubrey Manack Adams, Ph.D., and Richard Lipton M.D., analyzed adolescent data from the Family Burden Module from the Chronic Migraine Epidemiology and Outcomes Study to assess how living with a parent who has migraine affects children. The Family Burden Module observed 1,411 “dyads” consisting of a parent with migraine and an adolescent household member. The initial module survey included 52 items covering five domains. Those responses were refined to 36 items covering four domains and stratified to compare episodic and chronic migraine.

This study was the first to assess the burden of migraine on a parent-child relationship from the perspective of the child. The four domains assessed included Loss of Parental Support and Reverse Caregiving, Emotional Experience, Interference with School and Missed Activities and Events. Respondents were also evaluated for depression and anxiety. In all four domains, the perceived burden experienced by adolescent children whose parents have chronic migraine was higher than the perceived burden on the children of adults with episodic migraine. Adolescents of parents with chronic migraine also had a higher rate of moderate-to-severe anxiety symptoms, and were more likely to have reported having a headache within the previous three months. These findings are significant because they add adolescents’ negative experiences to the list of factors to consider when evaluating the indirect costs of migraine.

The CaMEO Study

The Chronic Migraine Epidemiology and Outcomes (CaMEO) Study², by Aubrey Manack Adams, Ph.D., Daniel Serrano, M.D., Dawn Buse, Ph.D., Michael Reed, Ph.D., Kristina Fanning, Ph.D. and Richard Lipton, M.D., was designed to characterize the course of chronic migraine while assessing its societal, familial and economic burden. It also characterized comorbidities found in patients with migraine. The study was performed by recruiting patients with either episodic or chronic migraine to complete internet surveys every 3 months over the course of 15 months. The survey asked respondents to report any appearance of 64 symptoms and conditions. The responses were then analyzed relative to their frequency of occurrence in respondents with chronic migraine versus episodic migraine.  

The primary goal of this study was to compare the effects of episodic and chronic migraine on individuals, but it also amassed a wealth of data crucial our understanding of the course and impact of episodic and chronic migraine; the variations in patient’s headache frequency, headache related disability, comorbidities, medication use; and the effect of migraine on the family unit. Data from the CaMEO has served as the foundation for subsequent research on the impact of migraine from the spousal perspective and in the assessment of barriers to chronic migraine diagnosis and treatment.

Migraine’s Indirect Costs

Richard Lipton, M.D., F.A.H.S is director of the Montefiore Headache Center. His research is primarily focused on headache epidemiology, so his work often relates to the economic burden of migraine. According to Lipton, that assessment has two components: direct and indirect costs. While direct costs can be quantified with figures, by adding the amount spent on migraine treatment, medication and other healthcare-related expenses, the indirect costs are more difficult to measure. As research like the Adolescent Perspectives study uncovers more evidence of additional societal impacts of migraine, our appraised indirect cost increases.

“Migraine is most common between the ages of 18 and 55,” Lipton said. “These are the peak productive years in a person’s life, which is part of the reason why migraine has such an enormous economic burden—it disrupts your education, professional and personal life at a pivotal time.”

Having an accurate estimate of both the direct and indirect costs of migraine is a useful tool for the advocacy of increased migraine research funding. The National Institute of Health’s budget for migraine research is about $15 to 20 million a year. When compared to annual costs of migraine estimated to be as high as $17 billion, the need to remit the discrepancy between funding and need takes on new urgency.

The American Headache Society is committed to keeping its members up to date on the most innovative and meaningful advancements in the realm of headache medicine. One of many initiatives to support that mission is our publication of Headache: The Journal of Head and Face Pain, published ten times per year, which highlights the latest findings in the realm of headache medicine research. Enjoy access to the full catalogue of content plus a print subscription included with an American Headache Society Membership. Click here to become a member today.

1. Buse, D. C., Powers, S. W., Gelfand, A. A., VanderPluym, J. H., Fanning, K. M., Reed, M. L., Adams, A. M. and Lipton, R. B. (2018), Adolescent Perspectives on the Burden of a Parent’s Migraine: Results from the CaMEO Study. Headache: The Journal of Head and Face Pain. doi:10.1111/head.13254
2. Adams AM, Serrano D, Buse DC, et al. The impact of chronic migraine: The Chronic Migraine Epidemiology and Outcomes (CaMEO) Study methods and baseline results. Cephalalgia. 2015;35(7):563-578. doi:10.1177/0333102414552532.