PO-55 | What patients want: a qualitative study on an information resource on migraine

Matteo Castaldo,¹ Zhiqi Liang,² Gina Williams,² Shayne Watson,² Caitlyn Haynes,² Zoe Diamond² | ¹Parma University; ²University of Queensland

Background: Informing migraine patients about their condition, can help to promote self-management and a better understanding of migraine-related aspects. The aim of this study was to explore patient preferences and perspectives on a migraine information resource to be used in clinical settings.

Methods: Seven individuals with migraine attacks at least once a month participated in two-hour focus groups to refine a digital information resource they received during participation in a feasibility study on individualized physiotherapy management. A physiotherapist experienced in managing patients with headache facilitated discussion regarding content, format and delivery of information. The sessions were audio-recorded and transcribed. Reflexive thematic analysis was performed to refine codes and interpret key themes from the data.

Results: Four themes were interpreted. Theme 1 was that the science mattered. Participants wanted evidence-based, neuroanatomical and physiological information to explain what migraine is, why they experience those symptoms, and how to self-manage. The science should be explained simply but not overly simplified. Analogy was popular for framing complex concepts but clear scientific diagrams were also preferred. Theme 2 was validation. Knowledge of migraine enabled self-compassion, reflection and acceptance which led to better self-management strategies such as pacing, exercise and stress relief. External validation from others through sharing of knowledge further encouraged these strategies. Theme 3 described tailoring of information for the population and the individual. The information had to reflect diversity in people. This meant that the clinician delivering information needed a thorough understanding of each patient’s experiences and circumstances so as to individualise content, delivery and pacing of information. Lengthy, crowded and bright visuals were to be avoided. Participants overwhelmingly wanted positive language and framing of their condition. This is related to Theme 4 of empowerment and positivity. Theme 4 described the strong sense of positivity participants wanted projected by the information and the empowerment they gained from it. Participants wanted migraine described as a condition that can be managed and quality of life improved, not a “disability”. Knowledge gave a sense of control. Self-management strategies with personal relevance were empowering.

Conclusion: Patients want scientific, validating, positive and relatable information that will empower self-management in migraine.