Abstract
Objective
Inform migraine care model development by assessing differences between patients with chronic migraine and episodic migraine in current state of treatment, disability, patient satisfaction, and quality improvement opportunities.
Background
Efficient and focused use of scarce resources will be needed to address challenges within large populations of migraine patients.
Methods
We deployed a cross-sectional survey study of randomly selected migraine patients within a community primary care practice.
Results
There were 516 survey respondents (516/1804 (30%) response rate). Chronic migraine patients were more likely than episodic migraine patients to report care from a neurologist (76/110 (69%) vs. 229/406 (56%); p=0.0026), and higher disability according to the MIDAS and HIT-6 questionnaires (p<0.0001). Chronic migraine patients were less likely than episodic migraine patients to report overall satisfaction with care (16/110 (38%) vs. 156/406 (66%), p=0.0002), satisfaction with access to care (17/110 (33%) vs. 176/406 (68%), p<0.0001) and advice they needed (16/110 (31%) vs 160/406, (62%), p<0.0001). Most patients with migraine had been offered triptan medications 377/516 (78%). Overall, 156/516 (31%) of individuals were currently taking any medication for migraine prevention, and 208/516 (40%) including botulinum toxin injections. Chronic migraine patients were more likely to be taking preventive medication (39/110 (36%) vs 117/406 (29%), p=0.0191) and report familiarity with the diagnosis of medication overuse headache than patients with episodic migraine (80/110 (81%) vs 256/406 (69%), p=0.0178).
Conclusions
We observed differences between patients with chronic and episodic migraine and expected care delivery improvement opportunities for migraine patients in primary care. CM patients report higher levels of disability and less satisfaction with access to perceived needed medical advice and care. These findings support the need to further develop and study novel care models to efficiently and effectively deliver high quality care and expertise in limited supply to a diverse migraine population.
Keywords: Population health, Quality measures, Care model, Utilization, Primary Care, Survey
Migraine prevalence remains high and is associated with increased health care utilization, disability, poor quality of life, work absenteeism and loss of productivity 1–5. Migraine is one of the most common conditions presenting to both a primary care and general neurology practice4, 6, 7, both of which face projected shortages of providers8–10. Efficient and focused use of scarce resources will be needed to address the challenges within large populations of migraine patients. As the American health care system payment models shift from a fee-for-service to value-based programs with increased focus on population health, a significant opportunity exists to develop high value care models for common neurological conditions such as migraine11.
Previous surveys of migraine populations have demonstrated a number of migraine care improvement opportunities. We know that triptan medications may be underutilized 12 and opiate and barbiturate containing combination medications may be over-utilized, both of which contribute to the risk of medication overuse headache and other complications13. First-line preventive migraine medications may also be underutilized, increasing the risk of transformation from episodic to chronic migraine 14–17. Medication overuse headache is common and important to both prevent as well as diagnosis and treat when recognized18. Resources required to care for a migraine population likely differ based on the frequency of headache and phenotype of episodic migraine (EM) or chronic migraine (CM)19. Patients with CM have greater disability than those with EM, 20–22 suggesting a greater need for headache specialists to participate in care of patients with CM.
We deployed a survey with the hypothesis that differences exist in the care of patients with EM and CM and to assess if care models tailored to these populations would be of interest to this population. Specifically, we sought to measure the current state of treatment and level of disability for our community practice patients based on EM or CM status, assess satisfaction with their current migraine care, identify gaps in high quality care according to the American Academy of Neurology quality measures23, and describe areas for opportunity in care delivery based on EM and CM status.
Methods
Study population
All patients aged 18 years or older with any migraine specific ICD-9 or ICD-10 diagnosis code between May 1, 2014 and April 1, 2017 within the Mayo Clinic Employee and Community Health practice in Rochester, MN were identified. The Employee and Community Health practice is comprised of Internal Medicine, Family Medicine, and Integrated Community Specialists (including Neurology24) serving the primary care needs of 155,000 individuals residing in Olmsted County and adjacent communities. We identified a total of 5,239 migraine patients based on ICD-9 and ICD-10 diagnosis code. A simple random sample of 1,804 patients was selected for a paper-based cross-sectional survey study with a predetermined goal of collecting 500 patient responses (assuming a response rate of approximately 30%). These goals were based on our prior experience conducting similar surveys of this population. No statistical power analysis was calculated prior to the study. A second survey was mailed to the patient one month later if no response was received. The Mayo Clinic Institutional Review Board reviewed and approved the project (# 17-004871) and granted an exception for written informed consent.
Measures
Electronic Medical Record and Registration
Prior to sampling, we collected patient-level information from the medical record and patient registration files to decrease the number of survey items needed to be collected from the patient. These factors included age, gender, marital status, race, and ethnicity.
Questionnaire
Migraine Phenotype, and Disability and Quality of life
We assessed characteristics of the patient’s migraine symptomology and experience, including history of self-reported migraine aura, headache frequency and severity. Patients reporting more than 15 headache days per month for more than three months were categorized as CM and the remaining patients were categorized as EM. Patients with EM reporting an average of greater than 2 headache days per week were defined as frequent EM (F-EM) and those reporting an average of two or less headache days per week were defined as infrequent EM (I-EM). Disability and quality of life were assessed using the Migraine Disability Assessment (MIDAS)25–27 and the Headache Impact Test – 6 (HIT-6)28 and utilization of the Family Medical Leave Act (FMLA) form as a proxy measure for how migraine may be impacting the patient’s ability to work.
Treatment and Patient Satisfaction
We assessed whether candidates for daily preventive therapies, defined by report of average headache frequency more than 2 headaches per week, were offered or treated with preventive medication. We inquired about frequency of triptan use, opiates, over-the-counter medications and combination analgesics including butalbital and caffeine to determine the burden of medication overuse headache and knowledge of this diagnosis. Types of care consultation, utilization of alternative therapies and patient confidence in their current treatment plan and ability to self-manage were also assessed.
Analysis
Data were summarized using frequencies and percentages for categorical and ordinal variables, and median and ranges for continuous variables. We compared distributions of demographic and clinical variables across questionnaire response status and migraine type using chi-square tests for categorical variables and the Wilcoxon rank sum test for continuous variables.. Respondents who failed to respond to a particular question on the survey were excluded from any analyses related to that question. All statistical tests were two-sided, and all data management and statistical analyses were performed using Statistical Analysis Software (SAS) Version 9.3 (Cary, NC, USA). Statistical significance was defined by p< 0.05.
Results
Demographics, Migraine Phenotype, and Disability and Quality of Life
The survey response rate for the first mailing was 309/1804 (17%) and for the second mailing 226/1486 (15%) for a total response rate of 516/1804 (30%). Of these, 16 patients indicated that they refused to participate and 3 others did not meet inclusion criteria, resulting in a final sample size of 516. Compared to individuals who failed to respond to the questionnaire, respondents were older (median 47.3 vs. 38.0 years, p<0.0001), more predominantly female (86.4% vs. 79.9%, p=0.001), more likely to be married (65.9% vs. 50.6%, p<0.0001), and more predominantly Caucasian (95.0% vs. 84.3%,p<0.0001). The demographics, assessment of disability, and quality of life characteristics comparing CM and EM phenotypes are summarized in Table 1 and comparison of I-EM and F-EM are summarized in Table 2. Patient reported frequency of headaches was consistent with diagnosis of CM29 in 110/516 (21%) and EM in 406/516 (79%). Of EM patients who provided enough information for sub-categorization, 237/395 (60%) were I-EM and 158/395 (40%) F-EM. CM patients were more likely to report care from a neurologist than patients with EM (76/110, (69%) vs. 229/406, (56%); p = 0.0026). The level of disability according to the MIDAS and HIT-6 questionnaires were significantly higher in patient with CM compared to those with EM (p<0.0001 for each). The level of disability was also higher for those with F-EM compared to those with I-EM (p<<0.0001 for each). Despite the high level of disability, only 65/516 (13%) of all patients reported use of the FMLA. Usage did not differ across CM vs. EM (p=0.1913), but F-EM patients reported higher usage than those with I-EM (20/237 (17%) vs. 26/158 (9%), p=0.0242). The median emergency department visits per year was 0 (range 0-8) with an averaged 0.3 visits per year without significant difference between groups. CM patients were more likely than EM patients to report migraine with aura (88/110 (80%) vs. 280/406 (69%), p=0.0492); no such differences were found in I-EM vs. F-EM patients. CM patients also reported an earlier age at onset of migraine than EM patients (median 17.5 vs. 20 years, p=0.0385). Patients with F-EM were more likely to be female than patients with I-EM (94% vs 83%, P=0.0008). No other variables differed significantly across CM and EM groups or across F-EM and I-EM groups.
Table 1.
Comparisons of Demographics, Disability and Quality of Life Characteristics Across Migraine Type
| Chronic Migraine (n=110) | Episodic Migraine (n=406) | Total (n=516) | p value1 | |
|---|---|---|---|---|
| Age, median (range) | 47.7 (18-79) | 47.2 (18-89) | 47.4 (18-89) | 0.5947 |
| Gender, n (%) | 0.3474 | |||
| Female | 92 (83.6%) | 354 (87.2%) | 446 (86.4%) | |
| Male | 18 (16.4%) | 52 (12.8%) | 70 (13.6%) | |
| Marital Status, n (%) | 0.6269 | |||
| Single | 29 (26.4%) | 89 (21.9%) | 118 (22.9%) | |
| Married/Life Partner | 70 (63.6%) | 271 (66.7%) | 341 (66.1%) | |
| Widowed/Divorced | 11 (10.0%) | 46 (11.3%) | 57 (11.0%) | |
| Race, n (%) | 0.6229 | |||
| White | 106 (96.4%) | 384 (94.8%) | 490 (95.1%) | |
| Non-white | 4 (3.6%) | 21 (5.2%) | 25 (4.9%) | |
| Age at Onset of Migraine, median (range) | 17.5 (3-70) | 20 (3-69) | 20 (3-70) | 0.0385 |
| Self Reported Migraine Aura, n (%) | 88 (80.0%) | 280 (69.1%) | 368 (71.5%) | 0.0492 |
| Emergency Room Visits / Year, median (range) | 0 (0-6) | 0 (0-8) | 0 (0-8) | 0.1016 |
| Ever evaluated or treated by neurologist, n (%) | 76 (69.1%) | 229 (56.4%) | 305 (59.1%) | 0.0026 |
| MIDAS | < 0.0001 | |||
| Little/no Disability | 5 (5.1%) | 145 (39.0%) | 150 (31.9%) | |
| Mild | 7 (7.1%) | 68 (18.3%) | 75 (16.0%) | |
| Moderate | 19 (19.4%) | 73 (19.6%) | 92 (19.6%) | |
| Severely disabled | 67 (68.4%) | 86 (23.1%) | 153 (32.6%) | |
| HIT-6 | < 0.0001 | |||
| Class I | 0 (0.0%) | 61 (15.0%) | 61 (11.8%) | |
| Class II | 7 (6.4%) | 80 (19.7%) | 87 (16.9%) | |
| Class III | 12 (10.9%) | 62 (15.3%) | 74 (14.3%) | |
| Class IV | 87 (79.1%) | 177 (43.6%) | 264 (51.2%) | |
| Use of Family Medical Leave Act, n (%) | 18 (17.3%) | 47 (12.1%) | 65 (13.2%) | 0.1913 |
Column totals may not sum to total number of individuals due to missing values for some variables.
P-values calculated using chi-square tests for categorical variables and Wilcoxon rank sum tests for continuous variables.
Table 2.
Comparisons of Demographics, Disability and Quality of Life Characteristics Across Episodic Migraine Types
| Infrequent Episodic Migraine (I-EM, n=237) | Frequent Episodic Migraine (F-EM, n=158) | Total (n=395) | p value1 | |
|---|---|---|---|---|
| Age, median (range), years | 47.3 (18-89) | 46.6(19-84) | 46.8 (18-89) | 0.1644 |
| Gender, n (%) | 0.0008 | |||
| Female | 195 (82.3%) | 148 (93.7%) | 343 (86.8%) | |
| Male | 42 (17.7%) | 10 (6.3%) | 52 (13.2%) | |
| Marital Status, n (%) | 0.3108 | |||
| Single | 47 (19.8%) | 41 (25.9%) | 88 (22.3%) | |
| Married/Life Partner | 165 (69.6%) | 99 (62.7%) | 264 (66.8%) | |
| Widowed/Divorced | 25 (10.5%) | 18 (11.4%) | 43 (10.9%) | |
| Race, n (%) | 0.4833 | |||
| White | 14 (5.9%) | 6 (3.8%) | 20 (5.1%) | |
| Non-white | 222 (94.1%) | 152 (96.2%) | 374 (94.9%) | |
| Age at Onset of Migraine, median (range), years | 22.0 | 18.0 | 20.0 | 0.0117 |
| Self Reported Migraine Aura, n (%) | 168 (71.2%) | 104 (65.8%) | 272 (69.0%) | 0.4929 |
| Emergency Room Visits / Year, median (range) | 0 (0-5) | 0 (0-8) | 0 (0-8) | 0.3749 |
| Ever evaluated or treated by neurologist, n (%) | 129 (54.4%) | 97 (61.4%) | 226 (57.2%) | 0.2543 |
| MIDAS | <0.0001 | |||
| Little/no Disability | 113 (51.8%) | 27 (18.5%) | 140 (38.5%) | |
| Mild | 38 (17.4%) | 29 (19.9%) | 67 (18.4%) | |
| Moderate | 35 (16.1%) | 36 (24.7%) | 71 (19.5%) | |
| Severely disabled | 32 (14.7%) | 54 (37.0%) | 86 (23.6%) | |
| HIT-6 | <0.0001 | |||
| Class I | 50 (21.1%) | 10 (6.3%) | 60 (15.2%) | |
| Class II | 55 (23.2%) | 22 (13.9%) | 77 (19.5%) | |
| Class III | 38 (16.0%) | 23 (14.6%) | 61 (15.4%) | |
| Class IV | 78 (32.9%) | 96 (60.8%) | 174 (44.1%) | |
| Use of Family Medical Leave Act, n (%) | 20 (8.9%) | 26 (17.0%) | 46 (12.2%) | 0.0242 |
Column totals may not sum to total number of individuals due to missing values for some variables.
P-values calculated using chi-square tests for categorical variables and Wilcoxon rank sum tests for continuous variables.
Treatment and Patient Satisfaction
The current and past treatment across migraine type comparing CM and EM are summarized in Table 3 and comparison of I-EM and F-EM are summarized in Table 4. Most patients with migraine had been offered triptan medications 377/516, (78%). Patients with F-EM were more likely to be offered triptan than those with I-EM (129/158 (88%) vs. 16½37 (71%), p=0.0003). Overall, the percent of individuals currently taking any oral medication for migraine prevention was only 156/516 (31%); and 208/516 (40%) including botulinum toxin injections CM patients were more likely to be taking preventive oral medication than those with EM (39/110 (36%) vs 117/406 (29%), p=0.0191) and there was no difference between those with F-EM 49/158 (32%) and I-EM 64/237 (28%). Botulinum toxin treatment was reported more frequently in patients with CM compared to EM (19/110 (17.6%) vs. 3¾06 (8.3%); p=0.0152) and in those with F-EM compared to I-EM (19/158 (12.3%) vs. 12/237 (5.2%), p=0.0205). Overall, 127/516 (25%) reported receiving a prescription for an opiate at any time to treat there migraine and 18/516 (3.5%) of all patients reported current use of an opiate with no differences between groups. The total rate of current opiate use more than an average of two days per week was < 4/516 (1%). Barbiturate or caffeine containing combination medications were commonly prescribed 134/516 (26%) with no differences between groups. Of all patients using combination analgesics only 32/516 (6%) reported a frequency of use of daily of more than half of the days per month consistent with medication overuse. CM patients were more likely to report familiarity with the diagnosis of medication overuse headache than patients with EM (80/110 (81%) vs 256/406 (69%), p=0.0178) with no difference between those with F-EM and I-EM.
Table 3.
Comparisons of Current and Past Treatment Across Migraine Type.
| Survey Question | Chronic Migraine (n=110) | Episodic Migraine (n=406) | Total (n=516) | p value |
|---|---|---|---|---|
| Have you ever been offered a triptan? | 81 (81.8%) | 296 (77.5%) | 377 (78.4%) | 0.4118 |
| Do you currently use your triptan medication? | 48 (59.3%) | 204 (69.2%) | 252 (67.0%) | 0.0553 |
| Are you currently taking a medication for migraine prevention? | 39 (36.1%) | 117 (29.0%) | 156 (30.5%) | 0.0191 |
| Are you currently treated with botulinum toxin injections? | 19 (17.6%) | 33 (8.3%) | 52 (10.3%) | 0.0152 |
| Are you familiar with medication overuse or rebound headache? | 80 (80.8%) | 256 (68.6%) | 336 (71.2%) | 0.0178 |
| Have you ever been prescribed an opiate for migraine? | 31 (28.7%) | 96 (24.0%) | 127 (25.0%) | 0.4122 |
| Are you currently using an opiate for migraine? | 3 (2.7%) | 15 (3.7%) | 18 (3.5%) | 0.3278 |
| Do you use opiate more than 2 days per week? | 1 (0.9%) | 3 (0.7%) | 4 (0.8%) | 0.8567 |
| Do you use combination analgesic such as Fiorinal, Midrin, Fioricet, Butalbital, or Excedrin? | 36 (33.3%) | 98 (24.4%) | 134 (26.3%) | 0.0868 |
| Every Day | 3 (8.6%) | 2 (2.1%) | 5 (3.8%) | |
| ‘Greater than half of the days each month’ | 14 (40.0%) | 13 (13.4%) | 27 (20.5%) | |
| ‘Less than half of the days each month’ | 18 (51.4%) | 82 (84.5%) | 100 (75.8%) | |
| How satisfied are you with the care you received for migraine at Mayo Clinic?, n (%) | 0.0002 | |||
| Very satisfied | 16 (38.1%) | 156 (65.5%) | 172 (61.4%) | |
| Neither satisfied or dissatisfied | 17 (40.5%) | 70 (29.4%) | 87 (31.1%) | |
| Very dissatisfied | 9 (21.4%) | 12 (5.0%) | 21 (7.5%) | |
| Missing | 68 | 168 | 236 | |
| How satisfied are you with access to the care you need?, n (%) | <.0001 | |||
| Very satisfied | 17 (32.7%) | 176 (68.0%) | 193 (62.1%) | |
| Neither satisfed or dissatisfied | 26 (50.0%) | 72 (27.8%) | 98 (31.5%) | |
| Very dissatisfied | 9 (17.3%) | 11 (4.2%) | 20 (6.4%) | |
| Missing | 58 | 147 | 205 | |
| How satisfied are you with the access to the advice you need?, n (%) | <.0001 | |||
| Very satisfied | 16 (31.4%) | 160 (61.8%) | 176 (56.8%) | |
| Neither satisfied or dissatisfied | 27 (52.9%) | 91 (35.1%) | 118 (38.1%) | |
| Very dissatisfied | 8 (15.7%) | 8 (3.1%) | 16 (5.2%) | |
| Missing | 59 | 147 | 206 | |
| Patient provided written survey comments to improve care | 61 (55.5%) | 217 (53.4%) | 278 (53.9%) | 0.7469 |
| Are you willing to participate in a focus group to improve care? | 54 (51.4%) | 282 (72.3%) | 336 (67.9%) | <0.0001 |
Column totals may not sum to total number of individuals due to missing values for some variables. P-values calculated using chi-square tests of significance.
Table 4.
Comparisons of Current and Past Treatment Across Episodic Migraine Type.
| Survey Question | Infrequent Episodic Migraine (n=237) | Frequent Episodic Migraine (n=158) | Total (n=395) | p value |
|---|---|---|---|---|
| Have you ever been offered a triptan? | 161 (71.9%) | 129 (87.8%) | 290 (78.2%) | 0.0003 |
| Do you currently use your triptan medication? | 115 (71.9%) | 86 (66.7%) | 201 (69.6%) | 0.3693 |
| Are you currently taking a medication for migraine prevention? | 64 (27.9%) | 49 (31.8%) | 113 (29.5%) | 0.4259 |
| Are you currently treated with botulinum toxin injections? | 12 (5.2%) | 19 (12.3%) | 31 (8.1%) | 0.0205 |
| Are you familiar with medication overuse or rebound headache? | 140 (60.6%) | 109 (69.9%) | 249 (64.3%) | 0.0893 |
| Have you ever been prescribed an opiate for migraine? | 53 (23.8%) | 41 (28.1%) | 94 (25.5%) | 0.3928 |
| Are you currently using an opiate for migraine? | 11 (21.2%) | 3 (7.3%) | 14 (15.1%) | 0.0826 |
| Do you use opiate more than 2 days per week? | 1 (0.4%) | 2 (1.3%) | 3 (21.4%) | 0.3439 |
| Do you use combination analgesic such as Fiorinal, Midrin, Fioricet, Butalbital, or Excedrin? | 53 (22.8%) | 43 (27.9%) | 96 (24.9%) | 0.2802 |
| Every Day | 1 (1.9%) | 1 (2.3%) | 2 (2.1%) | 1.0000 |
| ‘Greater than half of the days each month’ | 7 (13.5%) | 6 (14.0%) | 13 (13.7%) | |
| ‘Less than half of the days each month’ | 44 (84.6%) | 36 (83.7%) | 80 (84.2%) | |
| How satisfied are you with the care you received for migraine at Mayo Clinic?, n (%) | 0.0357 | |||
| Very satisfied | 105 (71.4%) | 47 (55.3%) | 152 (65.5%) | |
| Neither satisfied or dissatisfied | 35 (23.8%) | 33 (38.8%) | 68 (29.3%) | |
| Very dissatisfied | 7 (4.8%) | 5 (5.9%) | 12 (5.2%) | |
| Missing | ||||
| How satisfied are you with access to the care you need?, n (%) | 0.3306 | |||
| Very satisfied | 115 (70.6%) | 55 (61.8%) | 170 (67.5%) | |
| Neither satisfed or dissatisfied | 42 (25.8%) | 29 (32.6%) | 71 (28.2%) | |
| Very dissatisfied | 6 (3.7%) | 5 (5.6%) | 11 (4.4%) | |
| Missing | ||||
| How satisfied are you with the access to the advice you need?, n (%) | 0.0035 | |||
| Very satisfied | 110 (68.8%) | 44 (48.4%) | 154 (61.4%) | |
| Neither satisfied or dissatisfied | 45 (28.1%) | 44 (48.4%) | 89 (35.5%) | |
| Very dissatisfied | 5 (3.1%) | 3 (3.3%) | 8 (3.2%) | |
| Missing | ||||
| Patient provided written survey comments to improve care | 124 (52.3%) | 88 (55.7%) | 212 (53.7%) | 0.5375 |
Column totals may not sum to total number of individuals due to missing values for some variables.
P-values calculated using chi-square tests.
CM patients were much less likely to report that they were very satisfied with their care 16/110 (38%) than patients with EM 156/406 (66%), p=0.0002. CM patients were also less likely than EM patients to report they were very satisfied with the access to the care they needed (17/110 (33%) vs. 176/406 (68%), p<0.0001) or to the advice they needed (16/110 (31%) vs 160/406 (62%), p=<0.0001). Those with F-EM were less likely to be very satisfied with the care received than patients with I-EM (47/158 (55%) vs 105/237 (71 %), p=0.0357). Those with F-EM were also less likely to be very satisfied with the access to the care advice they needed (44/158 (48%) vs 110/237 (69%), p=0.0035).
Discussion
To the best of our knowledge our survey study uniquely assesses a specific well-defined community patient population with an aim to inform changes to the care model serving the study population. We observed that CM patients, the most disabled group, reported less overall satisfaction with their care and with access to the care and advice needed when compared to those with EM. Similar to previous investigations, 19 we observed patient-reported underutilization of preventive and triptan medications. Our findings confirm that patient needs and health care resource utilization differ based on the frequency of migraine and support distinguishing those with F-EM and I-EM19.
Patients with CM in our survey reported a low rate of preventive medication use (36.1%) and botulinum toxin (17.6%). Our survey did not capture those that may use both a preventive medication and botulinum toxin intended for prevention. These findings are similar to a prior survey of the United States population in which patients which 33% of patients CM reported use of preventative medication even though 87% of patients with CM received care for their headaches30. The CM patients in both studies were also least satisfied with their care30. The reasons for these findings remain unclear. Possible explanations for this include lack of medication efficacy, intolerable side effects, patient acceptance of daily medication, lack of understanding of therapy, and active effective treatment with non-medication options such as botulinum toxin or supraorbital stimulation. The rate of botulinum toxin treatment in CM was lower than we expected for such a disabled group of patients suggesting that some patients may benefit from knowing more about this treatment option. Although dissatisfaction from an often difficult to treat disabling disease may explain these differences, improvement of the care model to meet the needs of this complex population require further study.
Some examples of reported care model interventions that successfully improved migraine outcomes and patient satisfaction include use of group-based model triaging uncomplicated care to a nurse practitioner and complex care to a headache specialist 31 or development of “centers of excellence” for migraine care32. These models rely heavily on access to face-to-face encounters with a headache specialist care team and may not be scalable to large populations of migraine patients, particular if headache expertise is limited. Similar to other investigators,19 our data demonstrate differing care needs, disability, and utilization associated with migraine frequency; this data supports further development of care pathways in which patients with more frequent and debilitating migraine are triaged to specialty resources. 33Given the high rate of disability and low patient satisfaction with current migraine care, our study suggests early involvement of specialists in the care of patients with CM and F-EM. Non-traditional electronic consultations or curbside collaboration between specialists and primary care providers may be appropriate and efficient ways of developing patient-centered care plans, especially for patients with I-EM. Patients with debilitating migraine may benefit from improved access to clinical appointments, migraine education, and provider advice. Qualitative studies are needed to better understand the dissatisfaction of CM patients in particular. These findings will be used to further develop and study triage along care pathways within our current Integrated Community Neurology24, 34 practice model in which neurologists are co-located with primary care teams and utilize electronic consultations, curbside telephone consultations, and face-to-face visits. Although approximately 25% of patients in this practice have headache we have not yet developed nor studied a specific care pathway for migraine patients.
We were surprised by how few patients reported utilization of FMLA despite reporting high rates of disability based on the MIDAS and HIT-6 scores. Although survey respondents may have been more resilient and able to attend work compared to survey non-respondents, findings suggest that the burden of migraine may be underreported or recognized in the work place. This finding supports further consideration and study of the possibility that our population may struggle with the stigma of migraine35 and whether stigma may be a barrier to seeking better care for migraine. Educating our trainees, referring providers, care teams, and adapting our clinical education and future care models to use de-stigmatizing language is suggested36.24
Strengths of our study include a large random sample of a well-defined community population of patients likely to truly have migraine who were not tertiary referral patients. The demographics and age of onset were typical of migraine as well as the frequency of EM and CM when compared to the literature37 suggesting our results are generalizable to similar populations; our findings may be useful for other health care systems working to develop care models to serve the migraine population.
Our study has several limitations. First, the relatively low survey response rate may have biased the findings if patients with more severe symptoms were more likely to respond. We found that respondents differed from non-respondents with regard to age, gender, marital status and race. We did not observe response did not differ by migraine type, limiting the possibility of confounding by response. Second, use of patient-reported headache frequency to diagnosis headache type is likely not as accurate as a detailed headache history from a specialist, and lack of actual prescription data limits the reported accuracy of medication prescription or current use of opiates, preventive and triptan medications. We included both over-the-counter and prescription combination medications in the same survey question. Based on our clinical experience, ease of access, and limited use of opiates, we suspect that most patients in our survey were using over-the-counter rather than prescription combination medication therapies contributing to risk for medication overuse headache. Most patients reported a history of migraine aura based a definition adapted from a pre-visit questionnaire used by our headache subspecialty clinic. This is discordant with the previously reported frequency incidence of migraine aura38 suggesting that patients may have a poor understanding of migraine aura or the definition was unclear. We only included patients with a diagnosis of migraine and recognize that under-diagnosis of migraine is an important problem to consider in any effort to improve the outcomes of all patients within a population.
Conclusion
Our survey identifies differences between patients with CM and EM and confirms expected opportunities to improve care of patients with migraine in our population. We observed that CM patients are less satisfied with our current care model than patients with EM. The observed differences support development and further study of care pathways that align migraine care expertise and resources based on migraine frequency and disability. Qualitative studies may be needed to further explore the dissatisfaction of CM patients and identify additional improvement opportunities.
Acknowledgments
Financial Support and Disclosures:
This publication was made possible by CTSA Grant Number UL1 TR000135 from the National Center for Advancing Translational Sciences (NCATS), a component of the National Institutes of Health (NIH). Its contents are solely the responsibility of the authors and do not necessarily represent the official view of NIH. This publication was also made possible using the resources of the Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery.
Abbreviations:
- EM
Episodic migraine
- CM
Chronic migraine
- F-EM
Frequent episodic migraine
- I-EM
Infrequent episodic migraine
- MIDAS
Migraine Disability Assessment
- HIT-6
Headache Impact Test – 6
- FMLA
Family Medical Leave Act
Footnotes
Conflict of Interest Statement:
The authors do not have any conflicts of interest and do not have any disclosures to report.
References
- 1.Bonafede M, Sapra S, Shah N, et al. Direct and Indirect Healthcare Resource Utilization and Costs Among Migraine Patients in the United States. Headache 2018; 58: 700–714. 2018/02/16. DOI: 10.1111/head.13275. [DOI] [PubMed] [Google Scholar]
- 2.Smitherman TA, Burch R, Sheikh H, et al. The prevalence, impact, and treatment of migraine and severe headaches in the United States: a review of statistics from national surveillance studies. Headache 2013; 53: 427–436. 2013/03/09. DOI: 10.1111/head.12074. [DOI] [PubMed] [Google Scholar]
- 3.Group GBDNDC. Global, regional, and national burden of neurological disorders during 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet Neurol 2017; 16: 877–897. 2017/09/22. DOI: 10.1016/S1474-4422(17)30299-5. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Burch RC, Loder S, Loder E, et al. The prevalence and burden of migraine and severe headache in the United States: updated statistics from government health surveillance studies. Headache 2015; 55: 21–34. 2015/0½1. DOI: 10.1111/head.12482. [DOI] [PubMed] [Google Scholar]
- 5.Linde M, Gustavsson A, Stovner LJ, et al. The cost of headache disorders in Europe: the Eurolight project. Eur J Neurol 2012; 19: 703–711. 2011/12/06. DOI: 10.1111/j.1468-1331.2011.03612.x. [DOI] [PubMed] [Google Scholar]
- 6.Rasmussen BK. Epidemiology and socio-economic impact of headache. Cephalalgia 1999; 19 Suppl 25: 20–23. 2000/02/11. [DOI] [PubMed] [Google Scholar]
- 7.Rasmussen BK. Epidemiology of headache. Cephalalgia 2001; 21: 774–777. 2001/10/12. [DOI] [PubMed] [Google Scholar]
- 8.Hing E and Schappert SM. Generalist and specialty physicians: supply and access, 2009–2010. NCHS Data Brief 2012: 1–8. 2012/10/30. [PubMed] [Google Scholar]
- 9.Burton A How do we fix the shortage of neurologists? Lancet Neurol 2018; 17: 502–503. 2018/04/24. DOI: 10.1016/s1474-4422(18)30143-1. [DOI] [PubMed] [Google Scholar]
- 10.Freeman WD, Vatz KA, Griggs RC, et al. The Workforce Task Force report: clinical implications for neurology. Neurology 2013; 81: 479–486. 2013/06/21. DOI: 10.1212/WNL.0b013e31829d8783. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Burwell SM. Setting value-based payment goals--HHS efforts to improve U.S. health care. N Engl J Med 2015; 372: 897–899. 2015/0½7. DOI: 10.1056/NEJMp1500445. [DOI] [PubMed] [Google Scholar]
- 12.Fischer M, Frank F, Wille G, et al. Triptans for Acute Migraine Headache: Current Experience With Triptan Use and Prescription Habits in a Tertiary Care Headache Outpatient Clinic: An Observational Study. Headache 2016; 56: 952–960. 2016/04/20. DOI: 10.1111/head.12820. [DOI] [PubMed] [Google Scholar]
- 13.Bigal ME, Serrano D, Buse D, et al. Acute migraine medications and evolution from episodic to chronic migraine: a longitudinal population-based study. Headache 2008; 48: 1157–1168. 2008/09/24. DOI: 10.1111/j.1526-4610.2008.01217.x. [DOI] [PubMed] [Google Scholar]
- 14.Estemalik E and Tepper S. Preventive treatment in migraine and the new US guidelines. Neuropsychiatric disease and treatment 2013; 9: 709–720. 2013/05/30. DOI: 10.2147/ndt.s33769. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Lipton RB and Silberstein SD. Episodic and chronic migraine headache: breaking down barriers to optimal treatment and prevention. Headache 2015; 55 Suppl 2: 103–122; quiz 123–106. 2015/02/11. DOI: 10.1111/head.12505_2. [DOI] [PubMed] [Google Scholar]
- 16.Lipton RB, Bigal ME, Diamond M, et al. Migraine prevalence, disease burden, and the need for preventive therapy. Neurology 2007; 68: 343–349. 2007/01/31. DOI: 10.1212/01.wnl.0000252808.97649.21. [DOI] [PubMed] [Google Scholar]
- 17.Mafi JN, Edwards ST, Pedersen NP, et al. Trends in the ambulatory management of headache: analysis of NAMCS and NHAMCS data 1999–2010. J Gen Intern Med 2015; 30: 548–555. 2015/01/09. DOI: 10.1007/s11606-014-3107-3. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Munksgaard SB and Jensen RH. Medication overuse headache. Headache 2014; 54: 1251–1257. 2014/07/06. DOI: 10.1111/head.12408. [DOI] [PubMed] [Google Scholar]
- 19.Silberstein SD, Lee L, Gandhi K, et al. Health care Resource Utilization and Migraine Disability Along the Migraine Continuum Among Patients Treated for Migraine. Headache 2018; 58: 1579–1592. 2018/10/31. DOI: 10.1111/head.13421. [DOI] [PubMed] [Google Scholar]
- 20.Munakata J, Hazard E, Serrano D, et al. Economic burden of transformed migraine: results from the American Migraine Prevalence and Prevention (AMPP) Study. Headache 2009; 49: 498–508. 2009/02/28. DOI: 10.1111/j.1526-4610.2009.01369.x. [DOI] [PubMed] [Google Scholar]
- 21.Blumenfeld AM, Varon SF, Wilcox TK, et al. Disability, HRQoL and resource use among chronic and episodic migraineurs: results from the International Burden of Migraine Study (IBMS). Cephalalgia 2011; 31: 301–315. 2010/09/04. DOI: 10.1177/0333102410381145. [DOI] [PubMed] [Google Scholar]
- 22.Buse D, Manack A, Serrano D, et al. Headache impact of chronic and episodic migraine: results from the American Migraine Prevalence and Prevention study. Headache 2012; 52: 3–17. 2011/1½4. DOI: 10.1111/j.1526-4610.2011.02046.x. [DOI] [PubMed] [Google Scholar]
- 23.Ross S, Wall E, Schierman B, et al. Quality improvement in neurology: primary headache quality measures. Neurology 2015; 84: 200–203. 2015/01/15. DOI: 10.1212/wnl.0000000000001134. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Young NP, Elrashidi MY, Crane SJ, et al. Pilot of integrated, colocated neurology in a primary care medical home. J Eval Clin Pract 2017; 23: 548–553. DOI: 10.1111/jep.12667. [DOI] [PubMed] [Google Scholar]
- 25.Stewart WF, Lipton RB and Kolodner K. Migraine disability assessment (MIDAS) score: relation to headache frequency, pain intensity, and headache symptoms. Headache 2003; 43: 258–265. 2003/02/27. [DOI] [PubMed] [Google Scholar]
- 26.Stewart WF, Lipton RB, Kolodner K, et al. Reliability of the migraine disability assessment score in a population-based sample of headache sufferers. Cephalalgia 1999; 19: 107–114; discussion 174. 1999/04/24. DOI: 10.1046/j.1468-2982.1999.019002107.x. [DOI] [PubMed] [Google Scholar]
- 27.Stewart WF, Lipton RB, Simon D, et al. Validity of an illness severity measure for headache in a population sample of migraine sufferers. Pain 1999; 79: 291–301. 1999/03/06. [DOI] [PubMed] [Google Scholar]
- 28.Yang M, Rendas-Baum R, Varon SF, et al. Validation of the Headache Impact Test (HIT-6) across episodic and chronic migraine. Cephalalgia 2011; 31: 357–367. 2010/09/08. DOI: 10.1177/0333102410379890. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.The International Classification of Headache Disorders, 3rd edition (beta version). Cephalalgia 2013; 33: 629–808. 2013/06/19. DOI: 10.1177/0333102413485658. [DOI] [PubMed] [Google Scholar]
- 30.Bigal ME, Serrano D, Reed M, et al. Chronic migraine in the population: burden, diagnosis, and satisfaction with treatment. Neurology 2008; 71: 559–566. 2008/08/20. DOI: 10.1212/01.wnl.0000323925.29520.e7. [DOI] [PubMed] [Google Scholar]
- 31.Maizels M, Saenz V and Wirjo J. Impact of a group-based model of disease management for headache. Headache 2003; 43: 621–627. 2003/06/06. [DOI] [PubMed] [Google Scholar]
- 32.Blumenfeld A and Tischio M. Center of excellence for headache care: group model at Kaiser Permanente. Headache 2003; 43: 431–440. 2003/05/20. [DOI] [PubMed] [Google Scholar]
- 33.al. Me. Telemedicine improves migraine care quality: reseults of a pilot teleheadache program. 2015. American Headache Society Abstract. [Google Scholar]
- 34.Young N, Elrashidi MA, McKie P, Ebbert JO. Neuroimaging Utilization and Findings in Headache Outpatients: Significance of Red and Yellow Flags Cephalalgia 2018; In press. [DOI] [PubMed] [Google Scholar]
- 35.Young WB, Park JE, Tian IX, et al. The stigma of migraine. PloS one 2013; 8: e54074 2013/0½4. DOI: 10.1371/journal.pone.0054074. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 36.Young WB. De-Stigmatizing Migraine - With Words. Headache 2018; 58: 319–321. 2017/11/16. DOI: 10.1111/head.13209. [DOI] [PubMed] [Google Scholar]
- 37.Lipton RB, Manack Adams A, Buse DC, et al. A Comparison of the Chronic Migraine Epidemiology and Outcomes (CaMEO) Study and American Migraine Prevalence and Prevention (AMPP) Study: Demographics and Headache-Related Disability. Headache 2016; 56: 1280–1289. 2016/06/29. DOI: 10.1111/head.12878. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 38.Kissoon NR and Cutrer FM. Aura and Other Neurologic Dysfunction in or with Migraine. Headache 2017; 57: 1179–1194. 2017/05/26. DOI: 10.1111/head.13101. [DOI] [PubMed] [Google Scholar]