Headache Education Active-Waiting Directive: A Program to Enhance Well-Being During Long Referral Wait Times

The aim of this initiative was to evaluate the clinical impact, patient acceptability, and sustainability of implementing a newly developed evidence-guided migraine education program in an academic headache center.

Headache is the fifth most common reason for emergency department (ED) visits and accounts for more than 10 million physician visits annually. Successful management of headaches presents a challenge to both primary care providers and neurologists. The catchment area for an academic headache specialty center in a large metropolitan area is over 6 million with an average wait time of over 15 months. This delays diagnosis and impacts patients, thus a Headache Education Active-Waiting Directive (HEAD) was developed to improve patient knowledge and self-care skills among migraine patients awaiting an initial appointment.

This was a prospective pre- and post-intervention study. English-speaking adults, aged 18-65 years, referred to the Center for Headache at the University of Toronto for headache consultation between May and December 2012, who had not previously been assessed by a headache specialist, were consented and enrolled. Data on Migraine Disability Assessment (MIDAS) with additional questions on emergency visits, lifestyle, and self-efficacy were collected premigraine and postmigraine education program session.

Two hundred and forty-eight patients attended the HEAD program and 177 (71%) consented to the study. Detailed predata and postdata were available for 152 participants (mean age 42.5 ± 11.9 years, 86% females); 117/150 (78%) presented with depressive symptoms and 90/146 (62%) presented with anxiety symptoms. One hundred and thirty-seven of 143 (96%) were using headache treatment. Eighty of 137 (58%) were overusing over-the-counter medications and only 21/137 (15%) were on preventative treatment.  There was a decrease in the MIDAS scores of participants at postsession testing prior to neurological consultation (pre-MIDAS mean 50.0 ± 64.6 vs post-MIDAS mean 43.2 ± 50.8, P = .046), as well as a decrease in the number of patients requiring ED visit (presession 33 [22%] vs postsession 17 [11%], P = .001). A significant decrease in medication and narcotic overuse after the HEAD program was also observed. Hydration (water intake), morning protein intake, and routine sleep frequency also significantly improved postsession. Controlling for pre-MIDAS score, poor outcome defined as higher post-MIDAS score was statistically associated with lower education level [F(2,149) = 10.88, P = .001].  The majority (144/167, 86%) of the participants found the HEAD program helpful, with 70/167 (42%) very satisfied and 74/167 (44%) somewhat satisfied. One hundred and thirty-two of 167 (79%) felt empowered after attending the education session, and 152/167 (91%) felt that other patients with headache would benefit from this program.

The HEAD program, created to help manage lengthy appointment wait times, was associated with lowering migraine-associated disability, decreasing ED visits, reducing medication and narcotic use and overuse. Education empowers patients to take an active role in their care, especially in regards to improving treatment timing and modifiable lifestyle behaviors. This education program can potentially play a role in early intervention for headache patients especially with chronic migraine and medication overuse headache.