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Annotated patient-voice sources — lung adenocarcinoma

Last curated: 2026-08-29

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

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

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/

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.