Co-production and validation of an online resource to support the diagnosis of migraine

Rachel Potter; Manjit M  Matharu; Gemma Pearce; Swati  Raina; Kimberley  Stewart; Martin R Underwood

doi:10.1186/s12883-025-04398-9

Co-production and validation of an online resource to support the diagnosis of migraine

Rachel Potter
, Manjit M Matharu
, Gemma Pearce
, Swati Raina
, Kimberley Stewart
, Martin R Underwood

University of Warwick
National Hospital for Neurology and Neurosurgery
National Migraine Centre
Warwick Medical School
University Hospitals Coventry and Warwickshire NHS Trust

Research output: Contribution to journal › Article › peer-review

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Abstract

Background: Most adults with migraine never consult their family doctor or receive a formal diagnosis. It is often these people that turn to the internet for healthcare information. Here we describe the development and testing of an on-line version of a previously validated telephone migraine classification interview. Methods: We co-produced and tested the tool with people with migraine, clinicians, a web-design company and the National Migraine Centre, a UK based charity. We started with an online stakeholder meeting to understand what resources people wanted and any potential obstacles and facilitators to successful implementation. At a consensus meeting we used nominal group technique to gain consensus on the key questions to include. We used a ‘Think Aloud technique’ with people with migraine to explore the performance and acceptability of the questions in the new tool. To validate it, we asked people with headache disorders, including migraine, to complete the online tool before a doctor specialising in headache diagnosed their headache type. Level of agreement was measured between the outcome of the new migraine tool and the diagnosis by the doctor for 100 participants. Results: At the consensus meeting it was agreed that the questions for the new tool should be clear and easy to understand and distinguish between migraine, tension type headache, other primary headache disorders and medication overuse headache. For our initial validation exercise the level of agreement between the migraine quiz and the doctor diagnosis for 100 participants was 78% agreement. We made some adjustments to the wording and logic of the tool and repeated the validation exercise with 130 participants; the level of agreement was 80%. Conclusions: Despite a careful development process our on-line tool did not perform to an adequate standard. There is a risk that misclassification could lead to people receiving inappropriate treatment. Any on-line classification tool for multiple headache disorders should be adequately validated before widespread use to avoid risk of iatrogenic harm. Clinical trial number: Not applicable.

Original language	English
Article number	21
Number of pages	8
Journal	BMC Neurology
Volume	26
Issue number	21
DOIs	https://doi.org/10.1186/s12883-025-04398-9
Publication status	Published - 4 Dec 2025

Bibliographical note

This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the
licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

Funding

Martin Underwood is chief investigator or co-investigator on multiple previous and current research grants from the UK National Institute for Health Research and is a co-investigator on grants funded by the Australian NHMRC and Norwegian Research Council. He is a director and shareholder of Clinvivo Ltd that provides electronic data collection for health services research. He has accepted honoraria for examining theses and performing peer review. He receives some salary support from University Hospitals Coventry and Warwickshire. He is a co-investigator on two current and one completed NIHR funded studies that have, or have had, additional support from Stryker Ltd. He has accepted travel expenses and accommodation for speaking at academic meetings. Martin Underwood is chief investigator or co-investigator on multiple previous and current research grants from the UK National Institute for Health Research, and is a co-investigator on grants funded by the Australian NHMRC and Norwegian Research Council. He is a director and shareholder of Clinvivo Ltd that provides electronic data collection for health services research. He has accepted honoraria for examining theses, and performing peer review. He receives some salary support from University Hospitals Coventry and Warwickshire. He is a co-investigator on two current and one completed NIHR funded studies that have, or have had, additional support from Stryker Ltd. He has accepted travel expenses and accommodation for speaking at academic meetings.Manjit Matharu reports grants, personal fees, and honorarium for serving on advisory board from Allergan, honorarium for serving on advisory board from Novartis, personal fees and honorarium for serving on advisory board from Eli Lilly, personal fees and honorarium for serving on advisory board from TEVA, grants from Abbott, grants from Medtronic, grants from electroCore, and personal fees and honorarium for serving on advisory board from Salvia, outside the submitted work; In addition, MSM has a patent WO2018051103A1 issued. National Institute for Health Research (NIHR) Programme Development Grants, NIHR202614 16/12/2020.

Funders	Funder number
National Health and Medical Research Council
The Research Council of Norway
National Institute for Health and Care Research	NIHR202614 16/12/2020

Keywords

Migraine
Headache
Coproduction
Diagnosis
Validation

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Cite this

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abstract = "Background: Most adults with migraine never consult their family doctor or receive a formal diagnosis. It is often these people that turn to the internet for healthcare information. Here we describe the development and testing of an on-line version of a previously validated telephone migraine classification interview. Methods: We co-produced and tested the tool with people with migraine, clinicians, a web-design company and the National Migraine Centre, a UK based charity. We started with an online stakeholder meeting to understand what resources people wanted and any potential obstacles and facilitators to successful implementation. At a consensus meeting we used nominal group technique to gain consensus on the key questions to include. We used a {\textquoteleft}Think Aloud technique{\textquoteright} with people with migraine to explore the performance and acceptability of the questions in the new tool. To validate it, we asked people with headache disorders, including migraine, to complete the online tool before a doctor specialising in headache diagnosed their headache type. Level of agreement was measured between the outcome of the new migraine tool and the diagnosis by the doctor for 100 participants. Results: At the consensus meeting it was agreed that the questions for the new tool should be clear and easy to understand and distinguish between migraine, tension type headache, other primary headache disorders and medication overuse headache. For our initial validation exercise the level of agreement between the migraine quiz and the doctor diagnosis for 100 participants was 78\% agreement. We made some adjustments to the wording and logic of the tool and repeated the validation exercise with 130 participants; the level of agreement was 80\%. Conclusions: Despite a careful development process our on-line tool did not perform to an adequate standard. There is a risk that misclassification could lead to people receiving inappropriate treatment. Any on-line classification tool for multiple headache disorders should be adequately validated before widespread use to avoid risk of iatrogenic harm. Clinical trial number: Not applicable.",

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N1 - This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

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Co-production and validation of an online resource to support the diagnosis of migraine

Abstract

Bibliographical note

Funding

Keywords

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