Patient-voice layer — lung adenocarcinoma¶
Last curated: 2026-08-29
Purpose¶
This layer records recurring experiences that affect diagnosis, testing, treatment, safety, survivorship, and research priorities. It complements—not replaces—clinical evidence. The wiki synthesis is the concise entry point.
Method¶
Sources were selected from:
- PubMed-indexed qualitative, survey, patient-reported-outcome, caregiver, stigma, access, and supportive-care research retrieved live in this build session.
- Public pages of established lung-cancer or molecular-subtype organizations fetched on 2026-08-29.
- Published trial PRO analyses when they measure function or symptoms beyond clinician-graded adverse events.
Themes are included only when supported by at least two independent sources. Organization pages establish what resources and priorities an organization publicly presents; they are not prevalence studies.
Ethics rules¶
- Public sources only.
- Paraphrase; any direct quotation is ≤15 words and attributed.
- Do not record names or identifying details of private individuals.
- Do not infer diagnosis, smoking history, genotype, or preference from a story.
- Report themes in aggregate and retain disagreement.
- Distinguish organization advocacy from empirical patient-experience research.
- Do not reproduce posts from closed groups.
- Remove a source if its public status or consent basis becomes unclear.
Coverage¶
| Domain | Coverage | Main limitation |
|---|---|---|
| Stigma and smoking blame | Strong | Many studies are US/English-language and cross-sectional |
| Diagnosis/referral | Moderate | Health-system pathways differ |
| Biomarker waiting/access | Moderate | Implementation studies often measure process, not lived experience |
| Chronic targeted therapy | Limited-moderate | Trial AE tables dominate; qualitative driver-specific work is sparse |
| Caregivers | Moderate | Partner caregivers overrepresented |
| Financial toxicity | Moderate | Insurance context is country-specific |
| Trial access | Moderate | Referral and site data often not adenocarcinoma-specific |
| Global South | Limited | English-language and web-access bias |
| Racial/ethnic minorities | Limited-moderate | Small subgroup samples and broad categories |
| Young adults and parents | Limited | Advocacy narratives exceed peer-reviewed evidence |
Files¶
- Organizations — verified public organizations, geography, focus, and access dates.
- Themes — aggregate synthesis with at least two sources per theme.
- Sources — annotated evidence ledger and coverage limits.
Update protocol¶
At each sweep:
- Re-fetch every organization URL and record redirects or closure.
- Search PubMed for new qualitative/PRO/caregiver/equity work.
- Add, sharpen, or retire themes only with source support.
- Check whether molecular-subtype organizations have changed names or scope.
- Record languages, regions, and groups still missing.
Safety boundary¶
Organization directories can help people locate education or peer support, but inclusion is not endorsement, accreditation, or a substitute for clinical care. Emergency symptoms belong in red flags and safety concerns.