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Patient-voice sources — annotated inventory¶
Published research¶
Every PMID below was returned by live PubMed E-utilities in the 2026-08-30 audit session.
| Evidence domain | Source and contribution | Population / caution |
|---|---|---|
| Diagnostic delay | [PMID 18197868](https://pubmed.ncbi.nlm.nih.gov/18197868/){target="_blank" rel="noopener"} — qualitative account of symptom interpretation, primary-care interactions, and delay | Lung cancer; older pathway era; not LUSC-specific |
| Referral pathway | [PMID 36710377](https://pubmed.ncbi.nlm.nih.gov/36710377/){target="_blank" rel="noopener"} — patient and carer experiences from referral through treatment transition | Regional health system; transferability limited |
| Stigma construct | [PMID 32721137](https://pubmed.ncbi.nlm.nih.gov/32721137/){target="_blank" rel="noopener"} — conceptual and consequential framing | Lung cancer across histories and histologies |
| Smoking history and stigma | [PMID 31942920](https://pubmed.ncbi.nlm.nih.gov/31942920/){target="_blank" rel="noopener"} — compares stigma by smoking history | Stigma also affects never-smokers; categories can oversimplify exposure |
| Stigma measurement | [PMID 30779396](https://pubmed.ncbi.nlm.nih.gov/30779396/){target="_blank" rel="noopener"} — Lung Cancer Stigma Inventory and depression association | Association, not proof that stigma causes depression |
| Help-seeking | [PMID 24769603](https://pubmed.ncbi.nlm.nih.gov/24769603/){target="_blank" rel="noopener"} — stigma associated with timing of medical help-seeking | Self-report and selection effects possible |
| Clinical communication | [PMID 26553030](https://pubmed.ncbi.nlm.nih.gov/26553030/){target="_blank" rel="noopener"} — stigma and patient–provider communication | Does not isolate clinician from patient expectations |
| Race and stigma | [PMID 35415934](https://pubmed.ncbi.nlm.nih.gov/35415934/){target="_blank" rel="noopener"} — racial differences in experienced stigma | Context-specific; avoid universalizing group estimates |
| Social-network stigma | [PMID 29981928](https://pubmed.ncbi.nlm.nih.gov/29981928/){target="_blank" rel="noopener"} — patient and caregiver network experience | Dyadic/social evidence, mixed lung cancers |
| Clinician formation | [PMID 38836527](https://pubmed.ncbi.nlm.nih.gov/38836527/){target="_blank" rel="noopener"} — stigmatizing beliefs among healthcare trainees | Attitudes are proxies, not observed care outcomes |
| Stigma intervention | [PMID 29800746](https://pubmed.ncbi.nlm.nih.gov/29800746/){target="_blank" rel="noopener"} — multilevel opportunities across care and policy | Framework; effect on diagnosis or survival not established |
| Stigma-intervention evidence | [PMID 39197098](https://pubmed.ncbi.nlm.nih.gov/39197098/){target="_blank" rel="noopener"} — systematic review of 11 lung-cancer/COPD stigma interventions | Most studies were pilots; larger randomized evaluations and societal-level interventions remain gaps |
| Symptom–emotion relation | [PMID 28412094](https://pubmed.ncbi.nlm.nih.gov/28412094/){target="_blank" rel="noopener"} — emotional problems, symptoms, and quality of life | Cross-domain association |
| Long-term symptoms | [PMID 22134070](https://pubmed.ncbi.nlm.nih.gov/22134070/){target="_blank" rel="noopener"} — burden among long-term survivors | Survivor selection; older treatments |
| PRO implementation | [PMID 29110842](https://pubmed.ncbi.nlm.nih.gov/29110842/){target="_blank" rel="noopener"} — systematic review of PROMs in lung-cancer care | Instruments and implementation heterogeneous |
| Postoperative PRO pathway | [PMID 34995100](https://pubmed.ncbi.nlm.nih.gov/34995100/){target="_blank" rel="noopener"} — randomized PRO-based symptom management | Post-surgery setting; pathway intervention, not an instrument-only effect |
| Shared decisions | [PMID 31745852](https://pubmed.ncbi.nlm.nih.gov/31745852/){target="_blank" rel="noopener"} — qualitative meanings of shared decision-making | Screening context; principles transfer cautiously to treatment |
| Patient/caregiver preferences | [PMID 31998820](https://pubmed.ncbi.nlm.nih.gov/31998820/){target="_blank" rel="noopener"} — differences in outcome expectations and preferences | Caregiver perspective should not replace patient autonomy |
| Caregiver trajectories | [PMID 29476636](https://pubmed.ncbi.nlm.nih.gov/29476636/){target="_blank" rel="noopener"} — burden changes over time | Trajectory groups depend on measure and follow-up |
| Care after surgery | [PMID 35869414](https://pubmed.ncbi.nlm.nih.gov/35869414/){target="_blank" rel="noopener"} — early-stage caregiver burden | Surgical context |
| Patient–caregiver distress | [PMID 32253349](https://pubmed.ncbi.nlm.nih.gov/32253349/){target="_blank" rel="noopener"} — coupled sleep, anxiety, and depression | Association within dyads; direction can be bidirectional |
| Integrative pathway | [PMID 33902316](https://pubmed.ncbi.nlm.nih.gov/33902316/){target="_blank" rel="noopener"} — patient-and-caregiver care model | Feasibility/context evidence, not universal efficacy |
| Multidisciplinary care | [PMID 37451932](https://pubmed.ncbi.nlm.nih.gov/37451932/){target="_blank" rel="noopener"} — satisfaction with multidisciplinary versus serial models | Service configuration may drive results |
| Longitudinal financial toxicity | [PMID 33555936](https://pubmed.ncbi.nlm.nih.gov/33555936/){target="_blank" rel="noopener"} — financial burden changes with time | Health-system dependent |
| Advanced-disease hardship | [PMID 38775918](https://pubmed.ncbi.nlm.nih.gov/38775918/){target="_blank" rel="noopener"} — debt, work, travel, and household trade-offs | Advanced lung cancer; qualitative/generalizability limits |
| Survivor financial toxicity | [PMID 38630475](https://pubmed.ncbi.nlm.nih.gov/38630475/){target="_blank" rel="noopener"} — unmet needs, costs, and quality of life | Survivor and survey selection |
| Underserved populations | [PMID 35696628](https://pubmed.ncbi.nlm.nih.gov/35696628/){target="_blank" rel="noopener"} — low-income and minority perspectives | Context-specific but exposes structural needs |
| Trial accrual | [PMID 18650170](https://pubmed.ncbi.nlm.nih.gov/18650170/){target="_blank" rel="noopener"} — multi-level barriers | Older trial era; many barriers persist |
| Trial enrollment | [PMID 22591607](https://pubmed.ncbi.nlm.nih.gov/22591607/){target="_blank" rel="noopener"} — patient, physician, site and protocol barriers | Does not quantify every contemporary decentralized option |
| Rural participation | [PMID 35451964](https://pubmed.ncbi.nlm.nih.gov/35451964/){target="_blank" rel="noopener"} — rural–urban participation burden | Geography interacts with site distribution and insurance |
| Early palliative care | [PMID 20818875](https://pubmed.ncbi.nlm.nih.gov/20818875/){target="_blank" rel="noopener"} — randomized QoL, mood, care-intensity, and survival outcomes | Single-centre metastatic NSCLC landmark |
| Treatment quality of life | [PMID 31751163](https://pubmed.ncbi.nlm.nih.gov/31751163/){target="_blank" rel="noopener"} — KEYNOTE-407 patient-reported outcomes | Direct LUSC trial; averages hide individual harms and missingness |
| Unmet supportive needs | [PMID 34729855](https://pubmed.ncbi.nlm.nih.gov/34729855/){target="_blank" rel="noopener"} — systematic review linking needs and QoL | Measures and populations heterogeneous |
| Physical activity | [PMID 21113768](https://pubmed.ncbi.nlm.nih.gov/21113768/){target="_blank" rel="noopener"} — survivorship feasibility | Adapt to pulmonary/cardiac reserve; older evidence |
Public organizational sources¶
| Publisher | Page used | What was verified | Access date |
|---|---|---|---|
| GO2 for Lung Cancer | Help line | Navigation and support entry point | 2026-08-30 |
| GO2 for Lung Cancer | Stigma | Organization's stigma framing and advocacy | 2026-08-30 |
| LUNGevity Foundation | Patients and caregivers | Education, support, caregiver and survivorship hub | 2026-08-30 |
| Lung Cancer Research Foundation | How we can help | Patient hub, support line (844) 835-4325, English and Spanish resources, biomarker and clinical-trial pages | Rechecked 2026-10-24 (HTTP 200); was HTTP 403 on 2026-10-17 |
| Roy Castle Lung Cancer Foundation | Homepage | UK support and advocacy infrastructure | 2026-08-30 |
New organisational material checked 2026-10-17¶
| Publisher / source | Publication date | Contribution and limit |
|---|---|---|
| LUNGevity — Transforming Clinical Trials Initiative 2026 Third Quarter Updates, accessed 2026-10-17 | 2026-10-02 | Documents advocacy on trial burden, participation costs and assessment schedules, and links its working-group publication. Organisation report, not evidence that accrual or survival improved; mixed lung cancer, not LUSC-specific. |
| LUNGevity — Your Voice in Action: What We Learned From the 2026 HOPE Summit, accessed 2026-10-17 | 2026-09-08 | Public aggregate account of attendee perspectives on AI-assisted care and complementary approaches. Self-selected conference attendees; no population prevalence or LUSC-specific inference. HER2 listening-session findings are not transferred to LUSC. |
GO2's support and stigma pages and the Roy Castle homepage were retrieved successfully on 2026-10-17. This verifies continuing resource availability, not a new campaign or measured service benefit. No private groups or individual patient quotations were collected.
Recheck 2026-10-24¶
| Publisher / source | Access | Note |
|---|---|---|
| GO2 help line, https://go2.org/lung-cancer-support/help-line | HTTP 200 | Cited URL still live. The older /for-patients/ path now 404s |
| GO2 stigma, https://go2.org/lung-cancer/stigma | HTTP 200 | Cited URL still live |
| LUNGevity patients and caregivers | HTTP 200 | Hub unchanged |
| LCRF how we can help | HTTP 200 | Access restored after the 2026-10-17 403. Support line and bilingual resource listing verified; no new LUSC-specific campaign extracted |
| Roy Castle homepage | HTTP 200 | Unchanged |
No new patient-organisation campaign or LUSC-specific qualitative source survived triage. The GO2 /for-patients/ landing path is a 404; the help-line and stigma URLs already cited still resolve.
Sources deliberately excluded¶
- Closed social-media groups and private patient forums.
- Unattributed testimonials, search snippets, reposted quotations, and AI summaries.
- Organization claims about treatment efficacy without a primary scientific source.
- Individual stories that could not be ethically de-identified without losing their meaning.
- Any alleged LUSC-specific experience when the source reported only mixed lung cancers.
Coverage gaps¶
The search did not yield a mature qualitative literature specifically stratified by LUSC. It also left thin evidence for people with ECOG 3–4, those dying soon after diagnosis, people without caregivers, LGBTQ+ patients, Indigenous communities, non-English-speaking populations, informal-sector workers, and patients in much of Africa, Latin America, the Middle East, and South Asia. These are absences in the evidence, not evidence of absent needs.