Abstract
In recent years, emphasis has been placed on conducting headache research that is patient-centered to more explicitly incorporate the input of people who live with headache diseases. The Growing Up with Migraine Study was developed with this intention using a two-step process: 1. develop and administer a survey to identify research areas that matter most to people with adolescent migraine and/or their caregivers and 2. use the survey results to guide future secondary data analyses. This brief report summarizes the survey results from 373 individuals impacted by adolescent migraine. Findings suggested that people with history of adolescent migraine and/or their caregivers are most interested in research about migraine comorbidities and effects on psychological/social/emotional health, along with health-related outcomes and family-related topics. Future quantitative studies are planned that will explore these patient-identified priorities through secondary data analysis of an existing dataset.
Introduction
Migraine and other recurring headaches during adolescence are associated with negative impacts on academic, social, athletic, and family functioning, missed school days, psychological and medical comorbidities, and poorer health-related quality of life (1–3). While evidence suggests adolescent migraine is both prevalent and disabling, research in this age group is limited in comparison to studies of adults with migraine (4,5). Our overall goal is to study the effects of migraine in adolescents using data from the National Longitudinal Study of Adolescent to Adult Health (ADD Health) (6); the size and scope of this dataset amplifies the need for a set of strong a priori hypotheses and variables of interest. To align our goals for ADD Health analyses with research topics important to those impacted by adolescent migraine, we conducted a survey of people with a self-reported history of adolescent migraine and their caregivers to understand which topics are of most interest to people impacted by adolescent migraine. We present the results of this survey that queried respondents about the impact of migraine during adolescence and assessed their level of interest in a range of potential research topics addressable from the ADD Health dataset.
Methods
Study design and participants
As part of the larger Growing Up with Migraine Study, an online survey (in English) was administered in partnership with the National Headache Foundation (NHF), who advertised the survey to people registered in their database. Participants received an email invitation that outlined the target participants for the survey (adolescents with migraine, adults with a history of migraine during adolescence, and parents/caregivers with at least one child that has/had migraine during adolescence). All respondents provided informed consent prior to survey administration; no financial compensation was offered. Eligibility for the study was confirmed using self-reported items focused on migraine status, family characteristics, and age. This project was approved by IntegReview IRB.
A total of n = 674 participants completed initial screening items and n = 373 (55.3%) provided data reported here. The survey included items on sociodemographic characteristics, migraine history, and potential topics for adolescent migraine research, which were pre-specified based on variables available in the ADD Health dataset and guidance from experts in migraine research. Respondents were: 1. Adolescents (age 12–17) with migraine, 2. Adults (age ≥ 18) with a history of migraine during adolescence, or 3. Caregivers with ≥ 1 child with migraine during adolescence.
Variables
The current study assessed participants? interest in future research topics and the areas of their life that were/are impacted by adolescent migraine. The future research topics included basic descriptive information, family, “connections to other conditions” (comorbidities), psychological/emotional/social health, education/employment impacts, and health-related outcomes which were rated using a 5-point ordinal scale ranging from 1 (no interest) to 5 (extremely interested). The areas of life impacted by adolescent migraine were rated on a binary scale (yes/no) and included categories of family, education/academics, career/employment, physical health, mental health, social relationships, and self-identity.
Statistical analyses
Appropriate summary statistics (sample sizes [n] and percentages [%] for categorical variables; mean and standard deviations [SD] for ordinal and continuous variables) were calculated using SAS 9.4. Participant responses were comparable across reporter-type (e.g. adolescents with migraine, adults with a history of adolescent migraine, and parents/caregivers with a child having a history of adolescent migraine) so data are presented pooled across groups.
Results
Among 373 participants, 1.3% were adolescents with migraine, 79.9% were adults with a history of adolescent migraine (who may or may not also be a caregiver to an adolescent with migraine), and 18.8% were solely parents/caregivers whose child(ren) had a history of adolescent migraine. Mean age of participants was 52.3 years, 86.1% were female, 65.2% were married, 7.9% were students, and 54.5% were currently working part or full-time. Participants reported that migraine impacted several areas of life during adolescence (see Figure 1); participants who were caregivers contributed reports on the impact to their child’s life, all other participants contributed self-reports. The most frequently endorsed impact was related to education/academics (83.2%). Additionally, over half of all participants reported family (67.8%), physical health (66.9%), social relationships (60.4%), and mental health (50.4%) were impacted.
Areas of life impacted by migraine during adolescence by people with current or past adolescent migraine and/or caregivers.
Table 1 summarizes interest in six potential research areas. Interest was highest for psychological/emotional/social health (mean rating = 4.1; 41.1% extremely interested), health-related outcomes (mean rating = 4.1; 39.7% extremely interested), and comorbidities (mean rating = 4.1; 37.3% extremely interested). Participants were also asked to rank the research domains in order from 1 (greatest interest) to 6 (least interest), with comorbidities (mean ranking = 2.6; 27.4% selected as top pick), family impact (mean ranking = 3.4; 20.8% top pick), and psychological/emotional/social health (mean ranking = 2.9; 20.1% top pick) as the most popular potential research topics. Most respondents (75.4%) were very to extremely interested in learning about the effects of migraine and how they change from adolescence through adulthood (i.e. longitudinal research).
Descriptive statistics for level of interest in adolescent migraine research areas among people with current or past adolescent migraine and/or caregivers.
Discussion
Migraine is a complex condition that impacts an array of life domains during adolescence and beyond (1–3). It is critical to use input from people with lived migraine experience to guide the focus of research efforts that expand our understanding of adolescent migraine (7–8). This study was limited in its ability to survey current adolescents with migraine. While the area of adolescent life judged to be most affected by migraine is education/academics, this was based on a sample of respondents consisting primarily of adults recalling their adolescence or caregivers recalling the adolescence of their now-adult children (n = 350, 93.8% of all respondents combined). More research is needed on whether the areas of life impacted by adolescent migraine identified in this survey aligns with a larger sample of current adolescents with migraine. These same limitations are present when judging the research topics of primary interest to patients with adolescent migraine, though we feel this survey has proved a useful first step for directing future research and surveys. Qualitative work such as focus groups with individuals impacted by adolescent migraine could also add valuable insights not captured in the current data. Our results suggest people with a history of adolescent migraine and caregivers of adolescents with migraine are most interested in research about migraine comorbidities and effects on psychological/social/emotional health, along with health-related outcomes and family-related topics. These findings will be carried into the next phase of this project, using the ADD Health dataset to explore these patient-endorsed topics.
Clinical implications
Adolescent migraine impacts a wide array of life domains, such as physical and mental health and social relationships. Individuals impacted by adolescent migraine were particularly interested in future research focused on comorbidities and psychological/emotional/social health.
Footnotes
Acknowledgements
We would like to thank Teri Robert, PhD and Tammy Rome, MA, LPC for their valuable feedback on the survey and Tammy Rome, MA, LPC for her review of this brief report.
Declaration of conflicting interests
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: JSM is an employee of Vector Psychometric Group, LLC, and has received honoraria/payment/reimbursement from the journal Cephalalgia (biostatistics editor). JSM has also received research grants/support from Amgen, Inc. and the National Headache Foundation.
AS and CRH are employees of Vector Psychometric Group, LLC.
RJW is an employee of Vector Psychometric Group, LLC and has received honoraria/payment/reimbursement from the journal Cephalalgia (biostatistics editor).
RBL has received grant support from the National Institutes of Health, the Food and Drug Administration, the National Headache Foundation, and the Migraine Research Fund. He serves as consultant, serves as an advisory board member, has received honoraria from or conducted studies funded by Alder, Abbvie/Allergan, American Headache Society, Biohaven, Eli Lilly, eNeura Therapeutics, Lundbeck, Merck, Novartis, Pfizer, and Teva, Inc. He receives royalties from Wolff’s Headache, 8th Edition (Oxford University Press, 2009). He holds stock options in eNeura Therapeutics and Biohaven.
DCB is an employee of Vector Psychometric Group, LLC and has received grant support from the National Headache Foundation and grant support and honoraria from Allergan, Amgen, Biohaven, Lilly, Lundbeck, Novartis and Teva. She serves on the editorial board of Current Pain and Headache Reports.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This analysis funded by a grant from the National Headache Foundation.