Not yet independently audited
This page was written from verified sources but has not yet passed the independent citation audit. Treat its claims as provisional.
Annotated patient-voice sources — lung adenocarcinoma
Last curated: 2026-10-23 (sweep additions; 2026-08-29 audit for earlier rows)
Peer-reviewed stigma and communication research
| Source |
Contribution |
Limitation |
| Maguire R, et al. Lung cancer stigma: a concept with consequences for patients. PMID 32721137 |
Multilevel stigma framework and consequences |
Broad lung cancer; conceptual synthesis |
| Williamson TJ, et al. Lung Cancer Stigma: Does Smoking History Matter? PMID 31942920 |
Smoking-history differences in stigma experience |
Cross-sectional association |
| Ostroff JS, et al. Lung cancer stigma and depression: Validation of the Lung Cancer Stigma Inventory. PMID 30779396 |
Validated measurement and depressive-symptom relationship |
Does not establish causation |
| Carter-Harris L, et al. Stigma and medical help-seeking. PMID 24769603 |
Connects stigma with timing of symptom help-seeking |
Self-report and contextual sample |
| Shen MJ, et al. Patient–provider communication and stigma. PMID 26553030 |
Communication as a modifiable pathway |
Observational |
| McDonnell KK, et al. The association between lung cancer stigma and race. PMID 35415934 |
Racialized experience and stigma |
Small subgroup/context dependence |
| Occhipinti S, et al. Lung Cancer Stigma across the Social Network. PMID 29981928 |
Stigma beyond the individual |
Social-network sample limits |
Diagnostic pathway and testing
| Source |
Contribution |
Limitation |
| Tod AM, et al. Diagnostic delay in lung cancer: a qualitative study. PMID 18197868 |
Symptom interpretation and repeated consultations |
Older health-system context |
| Otty Z, et al. Patient and carer experiences of lung cancer referral pathway. PMID 36710377 |
Coordination, communication, uncertainty |
Regional pathway |
| Aggarwal C, et al. Genotyping availability and survival. PMID 37499192 |
Outcome relevance of results available before treatment |
Care-quality confounding |
| Anand K, et al. Reflex molecular testing. PMID 32600793 |
Workflow completion and turnaround |
Implementation, not qualitative experience |
Symptoms, PROs, survivorship, and palliative care
| Source |
Contribution |
Limitation |
| Morrison EJ, et al. Emotional problems, QoL and symptom burden. PMID 28412094 |
Links emotional/symptom burden with QoL |
Cross-sectional directionality |
| Yang P, et al. Quality of life and symptom burden among long-term lung cancer survivors. PMID 22134070 |
Persistent survivorship burden |
Survivor selection |
| Bouazza YB, et al. PROMs systematic review. PMID 29110842 |
Measurement landscape |
Heterogeneous instruments/interventions |
| Dai W, et al. PRO-based symptom management after surgery. PMID 34995100 |
Actionable monitoring model |
Staffing and generalizability |
| Temel JS, et al. Early palliative care. PMID 20818875 |
Randomized QoL, mood, care-intensity and survival outcomes |
Single-centre landmark |
| Cochrane A, et al. Unmet supportive care needs associated with quality of life. PMID 34729855 |
Unmet-needs synthesis |
Mixed stages and measures |
| Hassing MJ, et al. Patient-reported symptom monitoring in lung cancer (SYMPRO-Lung): long-term post hoc survival. PMID 42727592 |
Routine weekly PRO monitoring in stage I–IV disease associated with longer OS (adjusted HR 0.80) |
Post hoc; QoL was the primary endpoint |
| Cadranel J, et al. Living With ALK Fusion-Positive NSCLC: French nationwide survey. PMID 42823962 |
Driver-specific chronic-therapy burden from patients, caregivers and professionals; professionals underestimated psychological, intimacy and financial impact |
Self-selected online survey, 85 patients |
| Harrison V, et al. Barriers and Facilitators to Shared Decision-Making in EGFRm NSCLC: Patient Perspectives. PMID 42799215 |
What information EGFR patients need to feel involved; 37% did not feel involved |
28 participants recruited via a patient organisation |
Caregivers
| Source |
Contribution |
Limitation |
| Lee YH, et al. Trajectories of caregiver burden. PMID 29476636 |
Burden changes over time |
Caregiver selection |
| Zhu S, et al. Caregiver burden after early-stage lung-cancer surgery. PMID 35869414 |
Patient function–caregiver relationship |
Early-stage/surgical focus |
| He Y, et al. Sleep quality, anxiety and depression in patients and caregivers. PMID 32253349 |
Dyadic symptom relationship |
Observational |
Financial toxicity, access, and trial participation
| Source |
Contribution |
Limitation |
| Friedes C, et al. Longitudinal Trends of Financial Toxicity in Patients With Lung Cancer. PMID 33555936 |
Burden changes with time |
US insurance context |
| Takemura N, et al. Financial hardship experience in advanced lung cancer. PMID 38775918 |
Debt, work loss, trade-offs |
Context-dependent costs |
| Hsu ML, et al. Unmet Needs, Quality of Life, and Financial Toxicity Among Survivors. PMID 38630475 |
Persistent survivorship burden |
Survey selection |
| Patel MI, et al. Perspectives of Low-Income and Minority Populations With Lung Cancer. PMID 35696628 |
Informational, practical, emotional and access needs |
Small qualitative sample |
| Curran WJ Jr, et al. Addressing challenges of NSCLC clinical-trial accrual. PMID 18650170 |
Multi-level barriers |
Older trial era |
| Horn L, et al. Barriers associated with lung-cancer trial enrollment. PMID 22591607 |
Patient, physician and system factors |
Regional/sample limits |
| Mudaranthakam DP, et al. Rural and urban barriers to clinical-trial participation. PMID 35451964 |
Geography and burden |
Not adenocarcinoma-specific |
| Jiang M, et al. Financial toxicity among patients with lung cancer: systematic review and meta-analysis. PMID 42661720 |
Pooled financial-toxicity proportion 0.55 across 8 studies |
Heterogeneous definitions; observational |
Public organization sources
All sites below were directly fetched and returned HTTP 200 on 2026-08-29.
| Source |
Annotated use |
URL |
| GO2 for Lung Cancer |
General support, education, advocacy, screening |
https://go2.org/ |
| LUNGevity Foundation |
Education, biomarkers, support, research |
https://www.lungevity.org/ |
| Lung Cancer Research Foundation |
Research, education, advocacy |
https://www.lungcancerresearchfoundation.org/ |
| ALK Positive |
ALK-specific community and research collaboration |
https://alkpositive.org/ |
| EGFR Resisters |
EGFR-specific education, community and research |
https://egfrcancer.org/ |
| The ROS1ders |
ROS1-specific global community/research model |
https://www.theros1ders.org/ |
| Lung Cancer Europe |
European umbrella advocacy and policy |
https://www.lungcancereurope.eu/ |
| Global Lung Cancer Coalition |
International coalition and awareness |
https://www.lungcancercoalition.org/ |
| Roy Castle Lung Cancer Foundation |
UK support, prevention and research |
https://roycastle.org/ |
| Lung Cancer Canada |
Canadian education/support/advocacy |
https://www.lungcancercanada.ca/ |
| Lung Foundation Australia |
Australian lung-cancer support and policy |
https://lungfoundation.com.au/ |
| IASLC |
Global professional and patient-facing resources |
https://www.iaslc.org/ |
2026-10-16 recheck. The same twelve URLs were re-probed with an automated client. Eight returned HTTP 200. Four returned HTTP 403: ALK Positive, Lung Cancer Research Foundation, Global Lung Cancer Coalition and Lung Foundation Australia. A 403 to an automated client is typically a bot block and does not show that a site is down; recheck by hand before changing these rows.
| New public material (2026-10-16) |
Annotated use |
URL |
| Lung Cancer Europe — "Get Checked! 2026 campaign materials launch" (news item dated 1 Oct) |
Sixth annual awareness campaign for Lung Cancer Awareness Month; the 2026 focus is primary care, drawing on the experiences of people with lung cancer and of healthcare professionals around symptom recognition and delay |
(Lung Cancer Europe — "Get Checked! 2026 campaign materials launch", https://www.lungcancereurope.eu/news/get-checked-2026-campaign-materials, accessed 2026-10-16) |
| Additional public material checked 2026-10-23 |
Annotated use |
Source |
| Lung Cancer Europe — "What is lung cancer patient navigation?" (24 September 2026) |
Describes practical coordination across appointments, diagnostic results and treatment teams. Useful for defining navigation and trial-access research questions; advocacy education, not an estimate of navigation effectiveness |
(Lung Cancer Europe — "What is lung cancer patient navigation?", https://www.lungcancereurope.eu/news/what-is-lung-cancer-patient-navigation, accessed 2026-10-23) |
Coverage-limits note
The source set is not a representative sample of all people with lung adenocarcinoma. It overrepresents English-language publications, US/European health systems, digitally connected advocacy participants, partner caregivers, and people healthy enough to complete surveys or trials. Evidence is particularly thin for Africa, Latin America, the Middle East, much of Asia, Indigenous populations, people with ECOG 3–4, undocumented migrants, people without caregivers, and those unable to access molecular testing. No prevalence claim should be derived from organization stories or this source count.
Excluded source types
- Closed social-media or messaging groups.
- Private patient posts or names.
- Unattributed quotations.
- Commercial testimonials without clear consent and context.
- AI-generated summaries that do not link to the original public source.
- Trial listings not rechecked in ClinicalTrials.gov.