Annotated patient-voice sources

• Brod M, et al. Diabetic peripheral neuropathic pain qualitative study; 4 focus groups plus 47 interviews, n=70, English-speaking and pain ≥4/10. Rich domains, selected symptomatic sample. PMID 25354872.
• Belizan M, et al. Argentina zoster/PHN concept elicitation, n=10 aged ≥50. Cross-cultural extension, too small for prevalence. PMID 39232368.
• Widerström-Noga E, et al. SCI phenotype/management review. Useful central-pain context, not a primary qualitative study. PMID 28451808.
• Doth AH, et al. 24-study health-utility synthesis. Quantifies severity-related burden but not narrative experience. PMID 20227832.
• Grafton P, et al. Manually coded analysis of 3,627 public Reddit posts on trigeminal neuralgia treatment (2020-09-02 to 2025-08-15): 60.7% concerned surgery and 39.3% medication; pre-treatment questions centred on surgical outcomes and candidacy, and medication questions mostly came from people already treated and concerned side effects or use. Partly fills the trigeminal-neuralgia gap below; self-selected online posters, sentiment only, no clinical verification. Reported in aggregate. PMID 42861001. (Added 2026-10-21; abstract only, Europe PMC full-text endpoint returned HTTP 500.)

Coverage limits

The current layer is dominated by English-language peer-reviewed sources, diabetic neuropathy, PHN and SCI. It underrepresents low-income settings, younger people, trigeminal neuralgia (one 2026 social-media analysis added), postsurgical pain, non-English narratives and people unable to access specialty care.