Bridging Evidence Gaps in Indigenous Headache Care

Suvendrini Lena , MD, a headache neurologist at Women’s College Hospital in Toronto, Canada, discusses her recent review paper, which highlighted data on the burden of headache disorders among Indigenous communities. Here, she shares insights into barriers to headache care at several stages, evidence gaps related to Indigenous patients with headache, how living in a rural or remote community affects care, and more.

Neuro Therapy Today : Please introduce yourself to the audience by sharing your name, title, and affiliation as well as your role in the study. Dr. Lena : My name is Suvendrini Lena.

I am a headache neurologist at the Center for Headache and the Medical Lead for Environmental Health and Justice at the Indigenous-led Ganawishkadwe Center for Wise Practices, both at Women’s College Hospital in Toronto. I am an assistant professor of neurology and psychiatry at the University of Toronto and the study’s senior author.

Our team included Indigenous researchers and clinicians, all guided by Haudenosaunee Knowledge Keepers. Neuro Therapy Today : What were the most important findings from your review about the burden of headache disorders among Indigenous communities, and what stood out to you most about the current evidence base?

Dr. Lena : In our Knowledge Keeper Guided scoping review, we identified twelve studies reporting headache prevalence in a defined Indigenous population. Data from the United States is of the highest quality.

Three studies using National Health Interview Survey (NHIS) data spanning 2000–2015 showed that AIAN adults had the highest reported prevalence of severe headache or migraine (18.4%) among all racial/ethnic groups. In Canada, Australia, and Aotearea New Zealand, small-scale, community-specific studies in which headache was not the primary focus but was characterized as part of a broader question revealed prevalence of 12-22 % in diverse Indigenous communities.

Interpretation of the data is limited by variability in data collection methodologies and clinical definitions. Yet trends suggest a significant burden. Neuro Therapy Today : Your review identified barriers to headache care at multiple stages, from before diagnosis through assessment and treatment.

What are some of the most consequential barriers clinicians should recognize when caring for Indigenous patients with headache? Dr. Lena : We identified nine papers on barriers to headache care for Indigenous peoples living in Canada, the United States, and Australia, with obstacles clustered at three stages: (1) before diagnosis, (2) at the point of assessment, and (3) following diagnosis (access to treatment).

When Indigenous headache patients are assessed, language barriers and cultural differences in pain expression and symptom reporting can lead to provider misinterpretation of a patient’s headache experience. Physician bias and racism also impact headache assessment. For example, Black and Indigenous patients who reported higher pain scores (as a group) were less likely to receive a CT scan or neurology consult compared to White patients in an American study.

When it comes to treatment, Indigenous patients with migraine were more likely than White patients to receive prescriptions for non-specific over-the-counter medications, rather than migraine-specific medications. They reduced prescription rates, and premature discontinuation of medication was observed for Indigenous pain patients.

Neuro Therapy Today : You found no medical headache treatment trials or intervention studies specific to or inclusive of Indigenous patients. What does that evidence gap mean for clinicians trying to provide evidence-based, culturally appropriate headache care today? Dr.

Lena : Despite the high burden of headache in Indigenous communities, we did not identify any randomized or non-randomized headache treatment or intervention studies designed by, with, or for Indigenous patients. This knowledge gap reflects both a lack of clinical engagement with Indigenous patients and communities and systemic barriers that limit the contributions that Indigenous healthcare practitioners, both medical and traditional, can make to healthcare literature.

Presently, this knowledge gap impedes effective, culturally appropriate headache care. Neuro Therapy Today : The review highlights Indigenous conceptualizations of headache that connect individuals with their communities and land. How might incorporating these perspectives change the way clinicians assess and manage headache disorders?

Dr. Lena: Indigenous Knowledge Keepers and healthcare practitioners place very strong emphasis on biopsychosocial models of headache etiology and treatment. Land-based healing practices incorporating plant medicines, sweats, and other site-specific, culturally specific therapies are central to Indigenous healing traditions across the geographies studied in our review.

Collaborative models of care bridging medical and Indigenous healing concepts and practices can more effectively meet the needs of Indigenous headache patients. A collaborative approach may also shift medical models towards deeper consideration of environmental impacts on health. Neuro Therapy Today : Based on your findings, what changes in headache research and clinical practice are most urgently needed to improve diagnosis, treatment, and outcomes for Indigenous patients?

Dr. Lena: Indigenous patients require better access to effective pharmacological treatments as well as nonpharmacological treatment approaches that address broader social and environmental factors contributing to headache. These factors include intergenerational trauma, adverse childhood experiences, head injury, environmental contamination, and systemic racism.

Headache care must include Indigenous healing systems and practices. Research on headache in Indigenous populations that is led by and/or conducted in meaningful and equitable collaboration with Indigenous peoples and communities is an essential step in meeting these goals. Neuro Therapy Today : How does living in a rural or remote community compound the barriers to headache diagnosis and treatment identified in your review, and what should clinicians and health systems consider when working to improve access to headache care for Indigenous patients?

Dr. Lena: Indigenous communities are often situated in rural or remote locations where health services are under-resourced and ill-equipped to provide specialized headache care. Poverty and lack of infrastructure in remote Indigenous communities often impede access to virtual care solutions.

These inequities must be addressed. In parallel, collaborations with Indigenous healers in these communities can support sustainable, land-connected healing strategies. Our research paper threads biomedical methodologies for a critical literature review with the voices, reflections, and epistemological perspectives of Haudenosaunee Knowledge Keepers, demonstrating one constructive, collaborative strategy for dialogue and change.