1. Development of Patient Defined Migraine Assessment
Addie Wikowsky1, Erin M. Buchanan2, Ryan Cady3, Heather Manley3, Jim Sly3, Arielle Cunningham1
Missouri State University1, Harrisburg University of Science and Technology2, Clinvest Research, LLC3
Purpose
Migraine is a debilitating condition that impacts a multifaceted set of factors for a person, including physical, productivity, social, and cognitive factors. One concern is that current popular assessment tools for migraine do not adequately view the patient as a whole for their treatment, and traditionally only focus on only physical, pain-related items. Therefore, this project had two goals: first, to establish factors which are most important to patients when appraising the efficacy of headache treatment, and second, to develop a patient-reported outcome measure to evaluate meaningful response to headache treatment regimens, as defined by patients.
Results
Phase One: Topics Important to Patients and Generated Questions
Theme
Freq.
Sub-Categories
Examples
Associated Symptoms 14
Decreasing frequency. Feelings, Symptoms
My other migraine symptoms such as light/sound sensitivity, or nausea have improved.
Concentration 6
Focus, Clear head
During a migraine attack I find it difficult to concentrate on things that are important to me.
Doctor 5
Access, More options
My doctor helps me understand the full range of migraine symptoms.
My medical provider is knowledgeable of migraine.
Education 19
Patient, Doctor, Family/Friends
It is easy for me to speak to my provider about my migraine.
My friends understand my migraine symptoms and limitations.
Financial/Insurance 16
Cost of medication, Coverage
Adequate treatment of my migraine is a financial burden to me.
I often delay treating a migraine with medication due to its cost.
Frequency 26
Number of days/headache, Less Pain
The number of days where I have a very severe migraine has decreased.
I now have fewer migraine attacks.
Medication/Financial 23
Confidence in working, More options, Side effects/reliance
There are adequate options available to me for effective migraine medications.
I have confidence that when I take medication to treat a migraine it will work.
Normal Functioning 48
Mood, Daily activities, Limitations
I worry about being able to attend important events in my daily life.
My activity level has increased because my migraine attacks have improved.
Pain 21
Less pain, Headache free
I am improving because I have a reduced pain level.
I am having head pain less often.
Productivity
Home, Work
I have been able to complete more daily tasks because I have less head pain.
My migraines make me miss too much work.
Self-Worth
Enjoyment, Feel productive/contributing
My migraine attacks decrease my feelings of self-worth.
Migraine disease interferes with my life enjoyment.
Social 33
Family, Friends, Enjoyment
I have been able to schedule events with family and friends, which means I am improving.
Method
Phase One
This phase was designed to target our first research goal. An Licensed Professional Counselor on our team, Heather Manley, conducted a structured interview with ten participants. Each participant was compensated $200 for their time. The goal of this interview was to find out what topics were important to them when talking with their doctor about treatment plans. This interview included asking the participants their diagnosis, current and previous preventatives, and known triggers. Data from these interviews were coded so that the researchers can identify common concerns and facets that are important to individuals with migraines. These concerns included: cognitive concerns (concentration or brain fog), social connections (family or friends), emotions (self-worth), and day to day functioning (normal activities or productivity at work and home). Last, a set of provider specific options were coded, such as medication concerns, cost, insurance, and education of self and doctor as peripheral barriers to access of treatment
Phase Two
After discussing the ten participants responses from phase one, the researchers brainstormed questions to assess those topic areas. This phase was conducted to develop a questionnaire that could be used to assess response to treatment, and over 200 questions were generated for testing. 100 participants completed the new questionnaire. After receiving those answers, we used exploratory factor analyses (EFAs) on the different themes to examine the items. Questions were removed if they did not relate to their factor or receive a 75% patient approval rating. Then the top six questions were used from each of the remaining lists for re-examination in Phase Three (ongoing).
Phase Two: Questions Examined with EFA
Discussion
This research indicates the need for a multifaceted questionnaire to adequately examine the factors related to migraine – and the development of such a scale would be beneficial to patients and doctors in understanding long term care. While traditionally viewed as a manageable disease, this research highlights the necessary need to view migraine as more than just head pain and to consider the psychological impacts on all aspects of a patient’s life. The last phase of this project will lead to a final short-form migraine questionnaire that can be used to assess response to treatment in the doctor’s office or at home for the patient. Potential applications include developing a phone app that would allow migraine sufferers to track their migraines, symptoms, and thoughts across days to share with their physician.
Contact: Dr. Erin M. Buchanan
This project was graciously supported by a grant from the National Headache Foundation.
Theme
Original Questions
High Loadings
Important to Patients
Associated Symptoms 13 8 7
Concentration 9 6
Doctor
Education 15 10
Financial/Insurance 17 16
Frequency 19
Medication/Financial 22 14
Normal Functioning 27
Pain
Productivity 24
Self-Worth 12
Social 20
Original questions indicates the number of items generated by the team. High loadings indicates items that correlated with their factor at >= .30. After eliminating these questions, the ratings of importance (yes/no) were examined, and items with less than 75% were excluded.