Patient-voice source register — migraine¶
Last audited: 2026-08-30. Every PMID was re-fetched live through PubMed E-utilities in the audit session.
Syntheses and qualitative studies¶
| Source | Contribution | Boundary |
|---|---|---|
| Ng et al. 2026, PMID 42256516 | Meta-ethnography of migraine’s social life | Meaning synthesis, not theme prevalence |
| Heidari et al. 2022, PMID 35254739 | Cross-study patient-experience themes | Source heterogeneity |
| Palacios-Ceña et al. 2017, PMID 28827275 | Living with chronic migraine | Severe clinic phenotype |
| Gerstein et al. 2023, PMID 36905166 | Cognitive symptoms across attack phases | Qualitative MiCOAS sample |
| Mangrum et al. 2023, PMID 37140142 | Patient-prioritized acute/preventive benefits | Forty interviews; priority, not prevalence |
Interictal, stigma and representation¶
| Source | Contribution | Boundary |
|---|---|---|
| Hubig et al. 2022, PMID 35941572 | Interictal-burden measurement | US/German survey development |
| Takizawa et al. 2025, PMID 40524160 | Ictal and interictal burden in Japan | Cross-sectional association |
| Young et al. 2013, PMID 23342079 | Migraine versus epilepsy stigma comparison | Clinic-based |
| Seng et al. 2022, PMID 36321956 | Stigma’s unique association with disability/HRQoL | Cross-sectional; direction unresolved |
| Uçan Tokuç et al. 2024, PMID 38500111 | Internal stigma in chronic migraine/MOH | Single setting |
| Raffaelli et al. 2021, PMID 34766918 | Perception of online migraine imagery | Image sample/platform dependent |
| Goadsby et al. 2025, PMID 40891742 | European public knowledge and perceived stigma | Organization-distributed survey |
Health-system, work and family evidence¶
| Source | Contribution | Boundary |
|---|---|---|
| Katsarava et al. 2018, PMID 29392600 | European consultation/treatment gap | Cross-country survey differences |
| Randerson et al. 2025, PMID 41134026 | NZ primary-care clinician barriers | Qualitative; one health system |
| McInnarney et al. 2024, PMID 39704768 | NZ patient barriers | Survey selection |
| Hutchinson et al. 2026, PMID 41721442 | OVERCOME US unmet need | Web sample and treatment definitions |
| Buse et al. 2019, PMID 31407321 | Career, relationship and financial effects | Self-reported CaMEO association |
| Buse et al. 2016, PMID 27132088 | Paired family burden | Selected participating partners |
| Buse et al. 2018, PMID 29355924 | Adolescent impact of parental migraine | Family-module selection |
| Lipton et al. 2017, PMID 28185239 | IMPAC family-impact scale | Instrument development/validation context |
| Loder et al. 2015, PMID 25644596 | US minority-population burden/treatment synthesis | Broad categories and incomplete evidence |
| Gibbs et al. 2020, PMID 32369201 | My Migraine Voice patient survey | ≥4 MMD and prevention experience/failure sample |
| Leonardi et al. 2019, PMID 31023226 | Burden framed as life impact | Conceptual/societal synthesis |
Preference source¶
Gonzalez et al. 2013 (PMID 23808578) used a discrete-choice experiment to show that people value headache and post-headache outcomes differently. Choice experiments estimate tradeoffs under presented scenarios, not observed treatment behaviour.
Public organization sources¶
See organizations.md. All sites were checked directly on 2026-08-30; Headache Australia remained excluded after a fresh network-unreachable result rather than being treated as inactive or verified.
Explicit exclusions¶
- No closed Facebook, WhatsApp, Discord or support-group content.
- No individual story harvesting or named private-person testimony.
- No social-media search results promoted to clinical or prevalence evidence.
- No organization medical claim used as an efficacy or safety source.