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

Sep 30, 2026

Upload by Muffet

Development and testing of an online migraine classification interview designed to support diagnosis where many adults do not consult family doctors or receive formal assessment. The work co-produced the tool with people with migraine, clinicians, a web-design company, and the National Migraine Centre in the UK. Stakeholder input and nominal group consensus defined key questions, and a think-aloud study assessed question performance and acceptability. Validation compared quiz outcomes with headache-type diagnoses by a specialist doctor across 100 and then 130 participants, yielding 78% then 80% agreement; performance was not adequate, raising misclassification and iatrogenic harm concerns.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages8

Reading Time20 min

AccessFree to download

Background

Co-design and development process

Validation method and participant outcomes

Results and conclusions

Keywords

Potter et al. BMC Neurology (2026) 26:21 [https://doi.org/10.1186/s12883-025-04398-9](https://doi.org/10.1186/s12883-025-04398-9) BMC Neurology RESEARCH Open Access Co-production and validation of an online resource to support the diagnosis of migraine Rachel Potter1*, Manjit Matharu2, Gemma Pearce3, Swati Raina4, Kimberley Stewart1 and Martin Underwood 1,5 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. Thereis 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. Keywords Migraine, Headache, Coproduction, Diagnosis, Validation *Correspondence: Rachel Potter [r.potter@warwick.ac.uk](r.potter@warwick.ac.uk) 1Warwick Clinical Trials Unit, University of Warwick, Coventry, UK 2Headache Group Institute of Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London, UK 3Research Centre for Healthcare and Communities, Coventry University, Coventry, UK 4National Migraine Centre, London, UK 5Warwick Medical School University of Warwick, University Hospitals Coventry and Warwickshire, Coventry, UK © The Author(s) 2025. Open Access 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 obta

FAQs

What problem does the online migraine resource aim to address?

Many adults with migraine do not consult a family doctor or receive a formal diagnosis, leading some to rely on internet information. The resource is designed to help classification based on patient-reported history.

How was the online tool developed with stakeholders?

The team ran an online stakeholder meeting to identify desired resources and potential barriers, then used a consensus meeting with nominal group technique to agree key questions. A think-aloud technique with people with migraine explored question performance and acceptability.

How was the tool validated and what level of agreement was achieved?

Participants with headache disorders completed the online tool before a specialist doctor diagnosed headache type. Agreement between tool outcomes and doctor diagnosis was 78% for 100 participants and 80% after adjustments with 130 participants.

Sep 30, 2026

Upload by Muffet