Understanding the Patient Experience

PUBLICATIONS

CHAMP Headache Disease Patient Access Survey, Briefs 1 & 2

The Coalition for Headache and Migraine Patients (CHAMP) recently conducted the Headache Disease Patient Access Survey (survey) to better understand the migraine and headache patient experience. The survey illuminates important aspects of the headache disease patient journey by learning, directly from patients, about headache symptoms and severity, patient-healthcare professional interactions, treatment and insurance access, stigma, and much more. 

The goal of the survey is to help medical professionals, organizations, and individuals deepen their understanding of the difficulties faced by people with headache and migraine. Here we are highlighting key findings found in the first two survey briefs that were developed from the survey findings, along with links to the full reports.

Brief #1 – An Introduction to the Methods and Sample

The survey was distributed online by CHAMP and its coalition participants, primarily through social media and newsletters. Of the 2,037 people who completed the survey, respondents were overwhelmingly women (90%), many were 50 years old or older (45%), and the majority white (91%).

Also, compared to the population estimates of various headache types, this sample has a much higher proportion of people with self-reported diagnosis of migraine, cluster headache, new daily persistent headache, and post-traumatic headache, while likely under-reporting those with tension-type headache. Across all headache types, the majority of survey respondents (60%) reported monthly headache days in excess of 15 days or more, with 35% reporting headache on 25 days or more. 

Among those with only one headache type, cluster headache was rated the most painful (9.4 out of 10). The mean age of onset was youngest for migraine at 21.5 years.

READ THE FULL BRIEF

BRIEF ONE INFOGRAPHIC  

Brief #2 – Unmet Treatment Needs

Despite the widespread prevalence, people with migraine encounter many difficulties in their patient experience — from cost barriers, dissatisfaction with treatment plans, and a lag in seeking care and securing a diagnosis. In Brief #2, we explored these topics in the subsample of 1,770 survey respondents with a self-reported diagnosis of migraine. 

Migraine falls into two categories: episodic migraine, defined as experiencing migraine with fewer than 15 days per month of headache, or chronic migraine, with patients experiencing migraine with headache on 15 or more days per month. In the subset with migraine, 61% reported 15 or more headache days per month, on average, with 34% reporting headache on 25 days or more.

Delay in Seeking Medical Care

Despite the widespread prevalence, people with migraine encounter many difficulties in their patient experience — from cost barriers, dissatisfaction with treatment plans, and a lag in seeking care and securing a diagnosis. In Brief #2, we explored these topics in the subsample of 1,770 survey respondents with a self-reported diagnosis of migraine. 

Migraine falls into two categories: episodic migraine, defined as experiencing migraine with fewer than 15 days per month of headache, or chronic migraine, with patients experiencing migraine with headache on 15 or more days per month. In the subset with migraine, 61% reported 15 or more headache days per month, on average, with 34% reporting headache on 25 days or more.

Pharmacological Treatments

The majority of respondents had tried prescription preventives (87%), prescription acute treatments (85%), and over the counter treatments (76%) for their headaches in the past. In fact, the survey revealed that 55% reported using 10 or more more pharmacological treatments currently or in the past.

Non-Pharmacological Therapies

When we look at care, nearly all respondents (96%) had tried complementary or alternative therapies, such as over the counter supplements, yoga, dietary changes, or exercise to address their headache or migraine. A significant number (69%), had turned to biobehavioral treatments, and about 1 in 5 survey respondents tried neuromodulator or neurostimulator devices for migraine as an approach to care.

Barriers to Treatments & Dissatisfaction with Treatment Plan

When we look at barriers to non-pharmacological treatments, the most common access barriers were cost (76%) and difficulty obtaining insurance coverage (53%). 

Finally, despite high treatment usage, only 37% of survey respondents indicated they were satisfied or very satisfied with their overall treatment plan.

With an understanding of some of the difficulties in the patient experience for individuals with migraine, we can build understanding for medical professionals and organizations that can help make a difference. To learn more about the unmet treatment needs of patients, and what the survey unearthed on this important subject, please explore the full report.

READ THE FULL BRIEF  

BRIEF TWO INFOGRAPHIC  

A Note About Demographics

It is important to note that the sample demographics likely reflected the CHAMP coalition participants’ social media followings at the time of the survey; however, the coalition is working hard to increase its reach and provide more inclusive support to the BIPOC (Black, Indigenous, People of Color) community, all genders, and younger people with headache disorders. While we note the limitations, we also acknowledge that the high number of people with frequent headache and migraine attacks make it a unique sample in which to explore experiences with healthcare professionals, treatments, and various access barriers.

Citation Information

For those referencing this brief in your research or other writings, we suggest the following citation:

Brief 1

Morton, BA, Lenaburg, KJ, Brooks, CV, Buzby, MA, Lipton, RB, & Buse, DC. Coalition for Headache and Migraine Patients: Headache Disease Patient Access Survey. An introduction to the methods and sample (brief 1). https://headachemigraine.org/champ-survey-brief-1/. Published March 15, 2021. Accessed [“Insert Date”].

Brief 2

Morton, BA, Brooks, CV, Lenaburg, KJ, Buzby, MA, Lipton, RB, & Buse, DC. Coalition for Headache and Migraine Patients: Headache Disease Patient Access Survey. The symptoms and treatment experiences of people with migraine (brief 2). https://headachemigraine.org/champ-survey-brief-2/. Published March 15, 2021. Accessed [“Insert Date”].

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