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MyMigraineTeam Members on Communicating With Health Care Providers

Posted on September 15, 2022
Article written by
Heather Lapidus Glassner

  • A recent survey of MyMigraineTeam members found that people who were satisfied with their migraine doctors tended to have more emotionally engaging and interactive conversations with them.
  • Respondents reported better conversations and higher satisfaction with neurology or headache specialists than with other types of doctors.

Little medical research exists about people with migraine and their satisfaction with their doctors, the topics discussed during appointments, and the quality of their conversations.

For this reason, MyMigraineTeam partnered with a pharmaceutical company to better understand the interactions migraine patients have with their doctors. We conducted a survey of 250 members of the MyMigraineTeam community to understand how members feel about their relationships with the health care providers (HCPs) who manage their migraine symptoms. We wanted to understand how satisfied people living with migraine are with these relationships, and how they communicate with their providers.

To ensure MyMigraineTeam members’ voices are heard, we shared these findings in poster presentations at two recent conferences from the American Headache Society and the American Academy of Neurology.

Who Took the Survey?

The survey was taken by 250 MyMigraineTeam members, who live in the U.S., between September and December 2021. Most were women (93 percent), 42 percent had private insurance, and their average age was about 53 years old. All participants reported migraine attacks that moderately or severely affect their day to day life.

Satisfaction With Doctors

When asked about overall satisfaction with their health care provider, 62 percent of people surveyed were very satisfied or somewhat satisfied with their doctors.

Importance of Communication

Members’ satisfaction with their relationships with the doctors who manage their migraine symptoms may be related to communication. This survey asked respondents how much they agreed or disagreed with nine statements about communicating with their doctors. Examples of these statements include:

  • “Asked me about how migraine makes me feel even when I’m not having one”
  • “Paid close attention to what I was saying”
  • “Made me feel that they cared about my concerns”

Members who were satisfied with their doctors were much more likely to have emotionally engaging and interactive conversations with their HCP compared with members who were dissatisfied.

When participants were asked what would make these conversations better, some looked for more compassion. One respondent described an interaction with their doctor in this way, “I feel like I give them the info, but it gets brushed off.”

Another said it would be easier to communicate if the doctor “was more willing to actually pay attention to what I was saying and how I was feeling.”

Others wished for more patience from their providers. “These conversations would be better if the provider seemed less rushed and not in such a hurry to generate prescriptions and leave,” a respondent said.

Another said, “It would be better for her to listen to what I have to say, and talk about the medications that have worked that she removed and replaced with less effective meds with more side effects.”

A few mentioned they would appreciate a friendlier tone. “He is not the easiest person to talk to, very serious, so if he was friendlier it would be nice.”

In addition, respondents who saw neurologists who specialize in migraine — also known as migraine specialists — tended to be more satisfied with their doctors.

Types of Doctors Seen

According to research in the journal Headache, primary care providers are the major providers for migraine care (53 percent), rather than neurologists or headache specialists (23 percent combined). We wanted to know if experiences were different based on the type of doctor members saw.

Respondents in the survey were categorized into two groups:

  • Those who saw neurologists or headache specialists
  • Those who did not see neurologists or headache specialists, but instead saw other providers, including emergency medicine, primary care doctors, ophthalmologists, pain management specialists, or otolaryngologists

While 62 percent of participants overall were satisfied with their provider relationship, those who saw neurologists or headache specialists were significantly more likely to be satisfied (75 percent vs. 58 percent).

In addition, those who saw neurologists or headache specialists generally had a better communication experience than those who saw other types of providers. This was particularly true for these aspects of communication:

  • 85 percent of those who saw neurologists or headache specialists felt their provider gave them enough time to talk, compared with 61 percent for other types of providers.
  • 79 percent of those who saw neurologists or headache specialists felt their questions were clearly and thoroughly answered — compared to 63 percent of those who saw other types of providers.
  • 61 percent felt their neurologists or headache specialists gave them hope — a feeling shared by 44 percent of those who saw other types of doctors.
  • 60 percent of those who saw neurologists or headache specialists were asked to describe their experience in their own words. The figure was 39 percent for people who saw other types of providers.
  • 48 percent said their neurologists or headache specialists asked how migraine made them feel even when they weren’t having a migraine attack. This, too, was lower (30 percent) among those who saw other types of providers.

Talk With Others Who Understand

MyMigraineTeam is the social network for people with migraine and their loved ones. On MyMigraineTeam, more than 77,000 members come together to ask questions, give advice, and share their stories with others who understand life with migraine.

Are you satisfied with the relationship you have with the provider who treats your migraine? How could conversations with your provider be improved? Describe your experience in the comments below, or start a conversation by posting on your Activities page.

    All updates must be accompanied by text or a picture.
    Heather Lapidus Glassner has over two decades of experience in market research. She has conducted social listening and quantitative survey research across a variety of conditions. Learn more about her here.

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