Patient-voice layer — ADHD¶
Last reviewed: 2026-08-30
Purpose¶
This layer records recurring experience, access and advocacy themes without treating individual testimony as prevalence evidence. It complements, but does not replace, epidemiology and trials.
Method¶
- Search PubMed for qualitative studies, lived experience, stigma, diagnosis journeys, treatment preferences, access disparities and accommodations.
- Retrieve organization sites directly and record access date and stated scope.
- Include a theme only when at least two independent public sources support it.
- Prefer peer-reviewed qualitative synthesis for experience claims and organization sites for mission/services.
- Separate patient-reported value judgments from causal or prevalence claims.
Ethics¶
- Public sources only.
- Themes are paraphrased and aggregated.
- No names or identifying details of private individuals are recorded.
- No quote exceeds 15 words; this build uses no verbatim patient quotes.
- Organization inclusion is not endorsement.
- Social-media reach is not evidence of accuracy.
- Absence of a country or group reflects search coverage, not absence of advocacy.
Coverage¶
The current layer includes peer-reviewed work from adult services, college, work, women’s recognition, primary care, medication experience and public stigma. Organization coverage spans the US/international adult community, Canada, Europe, Ireland, Australia, Peru and Taiwan. African, Indigenous and non-English first-person sources remain underrepresented; organization pages from Peru and Taiwan do not substitute for qualitative lived-experience research.
Files¶
- organizations.md — verified public organizations.
- themes.md — cross-source thematic synthesis.
- sources.md — annotated source inventory and limitations.