Understanding the Patient Experience

PUBLICATIONS

CHAMP Headache Disease Patient Access Survey, Briefs 1-3

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  

Brief #3 – The Healthcare Experiences of People with Migraine

The focus of brief #3 is on respondents’ experiences with the healthcare professional (HCP) primarily responsible for their headache care, barriers to accessing an HCP, visits with headache specialists, emergency medical care and hospitalizations, and insurance barriers. Findings are derived from a subset of 1,770 survey respondents who self-reported receiving a medical diagnosis of migraine from a healthcare professional.

Experiences with the Healthcare Professional

The survey found that among those who were under treatment for their headaches, most were seeing a headache specialist (HAS) (35%) or neurologist (non-HAS) (34%). Appointment characteristics and HCP satisfaction varied by the type of HCP respondents were seeing. 

Scheduling an Appointment

In scheduling an initial appointment with the HCP who primarily treats their headaches, 82% of those who were seeing a primary care provider were able to schedule an appointment within 1 month, compared to only 34% of those seeing a HAS.

Appointment Visits

Most respondents (60%) “almost always” or “often” felt these appointment times were sufficient. Broken down by HCP type, though, 71% of those currently treated by a HAS said their appointment times were “almost always” or “often” sufficient, compared to 48% who were seeing a neurologist. 

HCP Satisfaction

On average, most respondents (68%) were “satisfied” or “very satisfied” with the current HCP who was primarily responsible for treating their headaches. Again, gaps emerged by HCP type, with 82% of those currently treated by a HAS reporting they were “satisfied” or better with their HCP, while 64% of those seeing a primary care doctor and only 56% seeing a neurologist (non-HAS) were similarly satisfied.

Barriers to Accessing an HCP or HAS

A notable barrier to accessing any HCP who could treat respondents’ headaches was finding one with either preferred knowledge or compassion. 

Among those who were specifically referred to a headache specialist and had scheduled an appointment, 32% reported a wait time of 4 months or more between referral and first appointment, with 12% waiting 7 months or more. Travel was also a challenge; about half (49%) of survey respondents reported travelling more than 1 hour to their HAS appointment (one way).

Emergency Medical Care

Patients’ experiences with emergency room and urgent care visits for headaches show that 38% of respondents had visited an emergency room or urgent care in the prior year for treatment of their headaches, and 9% had been admitted to the hospital at least one time for treatment of their headache.

Insurance Barriers

Patients reported high levels of insurance barriers to migraine treatments. Specifically, 87% of respondents reported they had experienced prior authorizations, 82% medication dose limits, 77% step therapy, and 68% had been denied coverage. On monthly headache-related out-of-pocket health care costs, 63% of respondents reported spending $100 or more, with 16% spending $500 or more. 

The healthcare system has many barriers for people with migraine. Wait times for headache specialists can be long for some. We believe there is added value in consulting these specialists, particularly for people with high frequency migraine attacks like those in our sample. However, migraine exists on a continuum and others may be well served seeing a migraine-educated PCP. Our full brief outlines the work our coalition is doing to educate HCPs and reduce other healthcare access barriers.

READ THE FULL BRIEF  

BRIEF THREE 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”].

Brief 3

Morton, BA, Brooks, CV, Lenaburg, KJ, Buzby, MA, Lipton, RB, & Buse, DC. Coalition for Headache and Migraine Patients: Headache Disease Patient Access Survey. The healthcare experiences of people with migraine (brief 3). https://headachemigraine.org/wp-content/uploads/Brief-3.pdf. Published September 28, 2021. Accessed [“Insert Date”].

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