SAN DIEGO — results of a recent survey showed.
Participants cited concerns that their complaints would be dismissed, a belief that healthcare providers could offer no additional help, and a prior unsuccessful clinician visit as reasons for not seeking care. Survey respondents saw an average of four clinicians before finally receiving a diagnosis.
“I was shocked that a third of patients were reluctant to seek care,” said study investigator Elizabeth K. Seng, PhD, associate professor, Ferkauf Graduate School of Psychology, Yeshiva University, and research associate professor, department of neurology, Albert Einstein College of Medicine, both in New York City. “That just shows a much higher level of medical distress than I expected from this community of people who are obviously suffering from this significant neurologic disease.”
The findings were presented at the annual meeting of the American Headache Society.
‘Significant Disease’
The study included 500 adults with migraine (mean age, 40 years) who signed up for a patient support group sponsored by Eli Lilly and completed a comprehensive survey. Respondents were mostly female, White, non-Hispanic, and well-educated individuals.
Half of participants had episodic migraines, and half had chronic migraines; 46% reported experiencing anxiety and 33% reported depression.
Almost all respondents had initiated treatment with a first calcitonin gene-related peptide (CGRP) monoclonal antibody.
“These are people who have significant enough disease that eventually they needed our top-tier preventive medication,” Dr. Seng said.
Participants answered a variety of questions pertaining to disease factors and treatment seeking. Just over 70% said they suspected they had migraine prior to diagnosis, “which means for almost 30%, it was a surprise when they received the diagnosis,” said Dr. Seng.
Nearly 40% reported that a relative first suggested they may have migraine, and 33% suspected it themselves. Only 17.4% said a healthcare provider suggested they may have the condition.
Almost a third of respondents (30.5%) reported they were reluctant to seek medical help.
“Some said they didn’t think their physician could do anything more than they were already doing for themselves, or that they’d be taken seriously, or they had had talked to doctors before and this wasn’t helpful,” said Dr. Seng.
These responses speak to the need for better public health messaging, she said. “People have this idea that migraine attacks aren’t a big deal when, in fact, these attacks area big deal and certainly deserve treatment.”
Family and friends were participants’ most common source of information on migraine, followed by the Internet. “This highlights the importance of getting migraine-related information out there so that when people talk to their friends and family, they’re receiving accurate information,” said Dr. Seng.
When asked about the path to a diagnosis, respondents reported consulting an average of four providers before receiving an accurate diagnosis. “That’s pretty remarkable,” Dr. Seng said.
An increase in frequency or severity of migraine attacks or attacks that interfered with work or school “pushed people over the threshold to seek care,” Dr. Seng said.
A subset of patients was asked about the factors they believed could help with migraine attacks. Of these, 80% cited diet and 70% stress reduction. Supplements, exercise, and relaxation techniques were cited much less frequently, said Dr. Seng.
The mean age of respondents’ migraine diagnosis was 26 years, so there was about 18 years from the time of diagnosis to participation in the survey, which could introduce recall bias. Other potential limitations included the fact that the survey had no open-ended questions, and men and ethnic minorities were underrepresented.