Patient perceptions of barriers to effective migraine management in Aotearoa New Zealand, 2024, McInnarney et al.

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Patient perceptions of barriers to effective migraine management in Aotearoa New Zealand
Blair McInnarney; Fiona Imlach; Jonathan Kennedy; Susan M. Garrett

INTRODUCTION
Migraine is a complex neurological condition which requires evidence based treatment, tailored to the individual. International evidence shows that treatment is often sub-optimal, but the experience of people with migraine in NZ is unknown.

AIMS
This study aimed to describe the barriers people with migraine disease face when seeking care for their condition in Aotearoa New Zealand (NZ).

METHODS
The Migraine in Aotearoa New Zealand Survey (MiANZ) was delivered online via SurveyMonkey from 22 August 2022 to 7 October 2022. Questions included: sociodemographics, the Migraine Disability Assessment Scale (MIDAS), ability to access health care, perception of health professionals’ knowledge and open-ended questions. Analysis used a mixed method approach.

RESULTS
Five hundred and thirty people from NZ responded, of whom 82% (433/530) were female and 77% (409/530) NZ European/other. Eighty-eight percent (467/530) had accessed primary care for migraine, with 36% (167/467) finding GPs’ knowledge of migraine to be excellent or very good. Forty-two percent (222/530) reported at least one instance where they had felt judged because of migraine by a health professional. Themes from free-text data included patient perception of health professionals’ knowledge of migraine, the presence of stigma within medical practice and systemic barriers to accessing effective health care.

DISCUSSION
People with migraine in NZ report significant barriers when trying to access effective management. Barriers were in both primary and secondary care and impacted the ability of people with migraine to manage their condition. More current migraine continuing medical education for GPs and other health professionals, better development and communication of care plans between primary and secondary care and patients and measures to address stigma are required to improve management of this complex disease.

Link | PDF (Journal of Primary Health Care) [Open Access]

 

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Newsroom: How to lessen stigma and gaslighting in the health sector

Health professionals ignoring or trivialising patients’ symptoms have negative impacts on health

 

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From the article

Lack of knowledge about a disease is at the root of stigma and bias, and that lack of research funding fuels a lack of understanding about many diseases that predominantly affect women, such as chronic fatigue syndrome, endometriosis, the mis-named polycystic ovarian syndrome, and migraine disease.

When you don’t understand the nature of a disease, or its impact, you’re more likely to take on negative beliefs or stereotypes about the people with that disease, which can lead to discriminatory behaviour.

A common stereotype of migraine is that it’s “just a headache” – so just take some paracetamol and carry on. If you don’t, you must be putting it on or using “migraine” as an excuse to get out of work or chores.

People who believe these stereotypes are more likely to judge those with migraines as weak, lazy, unreliable or even deceitful, and act accordingly.

And migraine sufferers are aware of these judgments. From the MiANZ survey, three quarters of respondents hid or minimised their migraine symptoms at least some of the time, for fear of being judged or misunderstood. As one respondent said, “I feel like I live with a made-up illness, constantly having to over-explain myself and try to convince people that it’s a real condition.” People who experience this often have more disability and a worse quality of life.

 

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It’s worth noting that not even doctors are immune from gaslighting. A physician in New Zealand (who does not want to be named) developed a headache severe enough to wake her in the night. She was initially refused a head scan and was told her headache was likely due to work stress. However, she pushed back, insisting a scan was clinically indicated. When it was done, the scan revealed a life-threatening aneurysm in her brain. If she hadn’t insisted … well, you can imagine. We’d be short of another medical specialist and our health system would be that much worse off.

DR FIONA IMLACH
Dr Fiona Imlach is a senior research fellow in the Department of Public Health at the University of Otago, Wellington. She is also co-founder of Migraine Foundation Aotearoa New Zealand.

Seems sensible. Perhaps she could be a useful ally. Perhaps we could let her know that the disease formerly known as chronic fatigue syndrome is also often mis-named.

 

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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.34Additionally, many (24%) thought migraine patients were motivated to maintain their disabilities,34reflecting the outdated notion that migraine is a psychosomatic, not a neurological, condition.35,36

These neurologists...

They seem very picky, don't they. They don't want anyone with 'functional' symptoms, which we are repeatedly told constitutes a substantial part of their clientele. And now it seems they don't want people with migraines because they are 'emotionally draining and time-consuming'. Who would have thought that a migraine patient was more emotionally draining for a doctor than a child with terminal cancer? The poor lambs, dealing with all those time-consuming angst-causing migraine patients. It's enough to make you give up medicine and go play golf.

 

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A comment on access.

I didn't see any discussion about the particular challenges that people in rural areas or even outside main centres face in getting good care. Also I didn't see any discussion of the extra barriers that people who are not NZ European might face. People who are not NZ European were under-represented in this online survey. It's also likely that wealthier people and people who think their opinions are worth listening to and are more likely to be assertive about getting good care are better represented. It is noted that 45% of the respondents have health insurance, whereas only 28% of the general population does.

The paper notes that the modern migraine medicines are not funded in New Zealand, despite evidence of effectiveness and economic benefits.

This study suggests GPs are not adequately informed about migraines treatment. My experience with a GP educator based in the Otago medical system was that they were dismissive about the role of HealthPathways, which provides guidance to doctors for use during consultations, seemingly believing that GPs don't need such assistance. This survey and the news suggests that it is very difficult to even get a GP appointment. I don't think we can rely on GPs for much.

It occurs to me that specialist migraine treatment (and, for that matter, ME/CFS management) is something that could be provided well and cost-effectively using a telehealth system. Sure, there have to be some physical exams along the way. I've been meaning to check out online options for primary care.

 

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These neurologists...

To be fair, not all neurologists. Contrast the attitude of those neurologists who find migraine patients emotionally draining and time consuming with the people in the team working to understand ALS, discussed in an article here.

“It’s challenging to sit in a room with a patient and their family, explain to them this disease, and then say, ‘well, I’m not doing anything,’” Dr. Michael Strong, who led the research team, said in describing the frustration medical professionals experience at the lack of treatment options.

“You can’t say that. You’ve got to say we’re doing our best. We’re working with colleagues worldwide to try and figure this out, because nobody should have to go through this,” said Strong, who holds the Arthur J. Hudson Chair in ALS Research at Western’s Schulich School of Medicine & Dentistry. “This is a horrendous disease. It’s just not fair.”

 

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The same problem is found in almost all health problems. So are they going to do more training on all those conditions? No one is ever going to understand all diseases, so advising training on all conditions is delusional. This isn't the way to address this, it's not even close to be realistic. Might as well advise to have angels take up the slack.

There are reasons why this happens. Almost always it's the same process: MDs ignore patient reports, downplay symptoms and psychologize problems, seemingly believing that their job stops at looking for deadly diseases and reassuring patients when they don't seem to have one, and more often than not don't even have the time anyway.

Unless the underlying reasons are addressed, this makes zero sense. You have to address root causes. Why doesn't medicine do root cause analyses? This is how you solve core problems, it's highly effective in all engineering fields. But instead we have this piecemeal and wildly redundant isolated take on each individual problem, all finding the same issues and all concluding the same way: more training for this specific condition. Nothing ever connects the dots, everyone is always looking at one question and spits out one answer, regardless of whether either have anything to do with the problem.

Medicine seems incapable of self-correcting. It's impossible to ignore it at this point. Things are so bad that I pretty much assume than in most conditions, AI models would already do better because of this alone, but there is no way to verify because the only valid comparisons would be with a system that currently fails at it. The simple fact of there being no limits on time and number of patients probably far outweighs better ability to diagnose in the best circumstances, which are usually the exception.

Once AI medicine takes off it's going to be shocking how many systemic problems it will expose. It will be like lighting up a room that was only ever looked at with tiny flashlights.