Patient perceptions of barriers to effective migraine management in Aotearoa New Zealand

Introduction

Migraine disease is a complex neurological condition, diagnosed based on criteria outlined in the International Headache Society’s International Classification of Headache Disorders (ICHD) (3rd edition).¹ It can be differentiated into episodic or chronic migraine, depending on the frequency of attacks. Chronic migraine is when headache occurs on ≥15 days a month; episodic when headache occurs on ≤14 days a month. Migraine is estimated to globally affect one in seven people² and 642,000 people in Aotearoa New Zealand (NZ).³ Furthermore, headache disorders are ranked 14th in global causes of disability-adjusted life-years (DALYs),⁴ but third for years lived with disability (YLD) and second for both DALYs and YLD in females aged 15–49.⁵

Given the severity of impacts, people with migraine require appropriate management, which includes an accurate diagnosis from a knowledgeable health professional, followed by an adequately explained, evidence-based treatment plan tailored to the patient’s needs, with scheduled follow-up.⁶ However, US-based research indicates that among those diagnosed with migraine, only 50–60% receive appropriate pharmacologic treatment.⁶ International research has identified barriers to effective migraine management at multiple levels, including incorrect diagnosis, lack of follow-up,⁷ lack of access to effective medication⁸ and poor communication of treatment strategies.⁹

There has been no research into barriers to migraine treatment within NZ. This study aimed to obtain a patient perspective on barriers to accessing appropriate migraine care in NZ, using data from the Migraine in Aotearoa New Zealand (MiANZ) cross-sectional survey undertaken in 2022. This anonymous online survey was initiated by Migraine Foundation Aotearoa New Zealand (MFANZ), a migraine charity working to increase awareness and support for people living with migraine in NZ. Survey results focusing on the impact of living with migraine have been published elsewhere.¹⁰ This paper aimed to document barriers to effective migraine treatment within NZ, with a particular focus on primary care, where most patients are seen¹¹ and where management of migraine should be based.¹²

Methods

Results

The final dataset included people with either a positive Migraine Identification test (ID-Migraine test™)²⁰ (n = 513) or who reported being diagnosed with migraine by a health professional (n = 17). The characteristics of the total survey sample are presented in Table 1. The majority of respondents were female 433/530 (82%) and NZ European/Other 409/530 (77%). From estimates of migraine prevalence in NZ,² migraine is around twice as common in females than males, but prevalence is similar across NZ European, Māori and Pacific people. From this, we would expect up to 75% of respondents to be female, 69% to be NZ European/Other, 17% Māori and 9% Pacific people (based on projections of the ethnic share of the NZ population in 2023).²¹

Most had part-time or full-time employment 374/530 (70%), around half (238/530) reported having health insurance and over 40% (222/530) reported feeling judged by a health professional either ‘sometimes’ or ‘always/often’.

Quantitative results

Respondents were asked about health professionals they had seen for migraine (Table 2). Percentages were calculated from the total sample. Eighty-eight percent (467/530) of respondents had previously accessed primary care, with a further 2% (11/530) wishing to. There were 192 respondents who had seen a neurologist (36%). Of the remaining 338, 183 (54%) respondents would like to see a neurologist. Many respondents indicated seeking complementary treatments, with 196/530 (37%) and 246/530 (46%) stating they had seen an acupuncturist or a massage therapist, respectively.

Table 2.Health professionals survey respondents had seen or would like to see for migraine.

Access to health care	Previously seen		Never seen – would like to		Never seen – don’t want to		Didn’t answer
Type of care	N	%	N	%	N	%	N	%
Primary care	467	88.1	11	2.1	10	1.9	42	7.9
Optician	333	62.8	60	11.3	64	12.1	73	13.8
Pharmacist	286	54.0	45	8.5	125	23.6	74	14.0
Massage therapist	246	46.4	120	22.6	87	16.4	77	14.5
Dentist	212	40.0	62	11.7	173	32.6	83	15.7
Physiotherapist	211	39.8	113	21.3	133	25.1	73	13.8
Emergency department (ED)	209	39.4	25	4.7	224	42.3	72	13.6
Acupuncturist	196	37.0	135	25.5	124	23.4	75	14.2
Neurologist	192	36.2	183	34.5	100	18.9	55	10.4
Nutritionist/dietitian	96	18.1	168	31.7	184	34.7	82	15.5
Pain specialist	68	12.8	214	40.4	162	30.6	86	16.2

Respondents were asked: ‘How would you rate the knowledge of migraine and treatment options in the health professionals you have seen?’ for different types of health professional, with response options of excellent, very good, good, fair, poor or not applicable/haven’t seen. Respondents rated knowledge of migraine and treatment highest for neurologists (excellent or very good, 128/200 64%). In contrast, only 167/463 (36%) of respondents thought the migraine knowledge of GPs was excellent or very good and emergency department (ED) knowledge was rated lowest (only 55/203 or 27% excellent or very good) (Fig. 1).

Fig. 1.

Respondent ratings of health professionals’ knowledge of migraine and treatment options.

People were asked if they had been unable to see a health professional for migraine and which type. Nearly half (128/264) of respondents reported being unable to see a neurologist (Table 3) while 74/264 (28%) of respondents experienced difficulty accessing primary care. Expense, excessive wait times and being unable to get an appointment were the most common reasons for being unable to see a health professional (multiple response options could be chosen). Interestingly, six participants noted in their free-text comments that they were unaware that there were any other health professionals to see, apart from a GP, for their migraine attacks.

Table 3.Barriers to accessing care from health professionals (total sample = 264).

Barriers to care	N	%
Which health professional unable to see
Primary care	74	28.0
Neurologist	128	48.5
Other specialist	27	10.2
ED	9	3.4
Complementary services A	26	9.8
Reason for being unable to see a health professional (any type)
Too expensive	101	38.3
Waiting time too long	103	39.0
Unable to get/declined appointment	106	40.2
Service not available where respondent lives	26	9.8
No transport	13	4.9
Difficult taking time off work	26	9.8
Could not arrange care for children/dependents	10	3.8
Other	31	7.3

^A These included osteopath, massage and physiotherapist.

Discussion

People living with migraine in NZ reported barriers at all stages of migraine care and identified a number of areas where migraine care could be improved. Positively though, 88% of respondents had been able to access primary care, with 66% finding the migraine knowledge of GPs to be ‘good’ or better

One area where care could be improved was knowledge about migraine and its management. There is significant variability in migraine presentation, both between an individual’s attacks and between different individuals.²² As such, a patient with migraine may not always be accurately diagnosed.²³ This leaves people disappointed in the level of care they receive, and critical of their consulting health professional.²⁴ International research suggests that large numbers of health care providers are not comfortable with prescribing migraine treatments, with 40% not comfortable with acute treatments, and 78% not comfortable with preventative treatments.^23,25 Preventatives are often poorly tolerated and poorly adhered to, because of adverse effects, slow onset of action and inadequate efficacy,²⁶ and thus require ongoing monitoring. There is evidence that many prescribe general analgesics over migraine-specific treatments, potentially due to gaps in knowledge.²⁴ Unfortunately, there is no local research on this.

More discussion with patients as to whether their expectations are reasonable may be helpful. If a patient expects the cause of their migraine disease or reasons for individual attacks to be explained, health professionals must take the time to explain the complex, chronic neurological nature of the condition, the distinction between triggers and premonitory migraine symptoms^27,28 and the need for a comprehensive approach to management. If this is neglected, people become disappointed in their level of care and consulting health professional.

The complexities of migraine should be reflected in treatment plans, where a ‘one size fits all’ approach does not support the various physiological pathways.²⁹ In addition, management should be tailored to suit individual lifestyle goals and factors.¹¹ Survey responses indicated that, while treatment plans may have been made, they were not always sufficiently explained and understood. This left patients confused about what actions to take. Some patients were reliant on health professionals during a migraine attack, signalling an inappropriate or poorly communicated acute management plan. Patients with chronic migraine should have scheduled follow-up with health care providers,³⁰ yet this was not always happening, which could be due to a lack of recognition of migraine as a chronic condition, and the cost and inconvenience of health appointments. Frequent consultations also open up a space for patients to better contribute to their condition management, which is extremely important in the context of chronic disease.³¹

Stigma remains a large issue for people with migraine. A 2020 survey undertaken by Migraine Australia found that 94% of respondents felt medical professionals were inclined to stigmatise people with migraine.³² Respondents to the MiANZ survey often felt that health professionals did not take their symptoms seriously. Stigma against migraine is an issue of historical significance. Migraine is more common in females than males, which has led to migraine being viewed as a feminine condition as far back as 18th-century Britain.²² In the modern era, people with migraine are frequently reduced to being ‘hysterical’,³³ with the common dogma that migraine is ‘just a headache’. Such beliefs can be held in medical consultations, with 42% of MiANZ survey respondents reporting instances of feeling judged by health professionals. Research into neurologists’ practices found that migraine appointments were more emotionally draining and time-consuming than others and that neurologists would not want more patients with migraine.³⁴ Additionally, many (24%) thought migraine patients were motivated to maintain their disabilities,³⁴ reflecting the outdated notion that migraine is a psychosomatic, not a neurological, condition.^35,36

Dismissal of a patient’s symptoms based on factors not related to their presentation is particularly prevalent in migraine, through previously described societal beliefs and the importance of the doctor in managing a patient.³⁷ This can in turn lead to internalised stigma by patients, potentially reducing their ability to access care.²² Once a patient has experienced one negative consultation, they are likely to carry negative feelings into their next consultation.³⁸ This leaves patients less willing to seek treatment, regardless of how badly it is needed. The impacts of stigma towards migraine extend far beyond the level of the individual sufferer, with it playing a role in treatment funding, disability support and social attitudes.²²

A specific way in which respondents identified stigma in the MiANZ survey was through gender bias. Differential treatment based on gender is likely to be a continuation of the historical view that migraine is a feminine condition. However, migraine treatment based on gender bias is poorly explored in international literature. As responses to the MiANZ survey were largely from females, there may be an underrepresentation of the perspective of other genders. Considering that international data suggest that females are at least twice as likely to have migraine disease than males,³⁹ it is likely that reports of gender bias are representative of the standard of health care.

Respondents identified many aspects of the health system that hindered the delivery of effective health care. Systemic barriers to care are not unique to migraine. Data from the NZ Health Survey indicated that waiting time and cost were both significant barriers to accessing primary care, identified by 21.2 and 12.9% of the general population, respectively.⁴⁰ These rates were lower than the results from the MiANZ survey, indicating that these were even greater barriers for survey respondents. An underfunded and understaffed health system means less time for clear communication about complex and chronic conditions, management plans and follow-up, and is likely to have a negative effect on patient’s perceptions about clinician knowledge of migraine.

Finances play a significant role in managing migraine, with 45% of MiANZ survey respondents having health insurance, compared to 28% of the general NZ population.⁴¹ We are unsure if our sample was skewed towards a higher socio-economic demographic, however, some respondents noted that funding health insurance was prioritised over other expenses. For many, health insurance was required to access specialist care. Research shows that reliance on private care has been increasing in NZ,⁴² which could increase inequities in access to specialist migraine care.

Access to other specialist care options is lower in NZ, compared to other health care systems. Internationally, headache clinics based in primary care (eg delivered by a GP with a special interest and additional training in headache management) with integration into secondary and tertiary services are used to support people with migraine with more difficult to manage disease but who may not meet the criteria for neurologist review.^43,44 While such models have not significantly reduced waiting times, they are a step towards providing a standard of care specific to headache and migraine⁴⁵ and have been shown to be effective and cost-effective.⁴⁶ Such clinics have also increased utilisation of nurses, which can improve available care, both through reducing the workloads of specialist doctors and improved triaging of patients.⁴⁵ Another key difference when comparing NZ to comparable international systems such as Australia, Canada and the UK, is the funding of medications. Modern migraine medications, such as anti-CGRP medications, are not currently funded in NZ, despite evidence of effectiveness^47,48 and economic benefits.⁴⁹

Table 4 offers migraine-specific recommendations for reducing barriers to effective treatment.

Conclusion

Migraine disease is a complex neurological condition that requires appropriate medical management. From the MiANZ survey of people with migraine in NZ, we found that an adequate standard of management was often not perceived to have been met, with barriers existing across both primary and secondary care. Identified barriers related to patient perceptions of poor health professional knowledge about migraine, stigma and issues within the health care system. These barriers meant many people with migraine were limited in their ability to find adequate support to manage their condition. To improve migraine health care, it is essential to address systemic issues that affect all patients, such as inadequate health professional numbers that lead to delayed and inaccessible care. Migraine-specific approaches include increasing the range of medications that are funded so that people with migraine have access to the full range of new treatment options and ensuring that health professionals have up-to-date knowledge about migraine management. Further research is required to better understand the health professional’s perspective of migraine management, particularly that of GPs.

Supplementary material

Supplementary material is available online.