Identifying Best Practices and Gaps in Late-Stage Lung Cancer: From Diagnosis and Staging Through Survivorship and/or End of Life

September 2022 Vol 13, No 9
Nancy Collar, RRT-NPS, AE-C, ACCS
Lung Navigator, Interventional Pulmonology, Inova Health
Brooke O’Neill, MSN, RN
Program Coordinator, Lung Cancer Screening Program, Weill Cornell Medicine
Kim Parham, BSN, RN, CN-BN
VP, Strategic Partnerships and Clinical Liaison
Thynk Health
Shawn Perkins, BSN, RN, OCN
Oncology Services Nurse Navigator
UNC North Carolina Cancer Hospital
Amy Jo Pixley, MSN, RN, OCN, ONN-CG(T)
Penn Medicine Lancaster General Health
Ann B. Barshinger Cancer Institute
Emily Gentry, BSN, RN, HON-ONN-CG, OCN
Academy of Oncology Nurse & Patient Navigators
Cranbury, NJ

In the United States, the second most commonly diagnosed cancer in both men and women is lung cancer, including both non–small-cell lung cancer (NSCLC) and small-cell lung cancer (SCLC).1 Approximately 84% of lung cancers are classified as NSCLC.1 According to the National Cancer Institute Surveillance, Epidemiology, and End Results Program, it is estimated that 235,760 new cases of lung cancer were diagnosed during 2021, with an estimated 131,880 attributable deaths, representing approximately 12% and 22% of all cancers, respectively.2 Although the overall relative 5-year survival rate for lung cancer from 2010 to 2016 was 21%, the American Cancer Society reported a noted 2.2% decline in mortality from 2016 to 2017, giving rise to the importance of screening, smoking cessation, and standardization of biomarker testing.3,4

Although screening programs are in place to detect early lung cancer cases in patients at risk for developing lung cancer, most lung cancer cases are diagnosed in symptomatic patients, the majority of whom have late-stage disease and a poor prognosis.5 After diagnosis, the goal is to select the most appropriate therapy for each patient, with one such step being biomarker testing of tumor material. Biomarker testing, especially in community settings, must be sent out, and it can take weeks for the results to come back and subsequently for patients to receive appropriate care.6,7 By understanding these gaps and best practices, lung cancer navigators can help patients throughout the continuum of disease.

In a previous paper titled, “Identifying Best Practices and Gaps in Early-Stage Lung Cancer: From Screening and Early Detection Through Resectable Disease Treatment,” we discussed the impact of lung cancer screening, management strategies for computerized tomography (CT) screening and incidental pulmonary nodules, and best practices for lung cancer navigators. The purpose of this paper is to provide insight into the processes of lung cancer diagnosis and staging, to describe treatment planning and multidisciplinary team involvement throughout the care continuum, and to discuss best practices for lung cancer navigators to incorporate into practice, while acknowledging the challenges and intricacies of navigation in late-stage lung cancer.8

Best Practices and Gaps in Diagnosis/Staging

Accurate classification of lung cancer histology and subtypes is crucial for optimal management and treatment strategies to ensure appropriate treatment decisions are made. In 2014, an international multidisciplinary panel from the International Association for the Study of Lung Cancer, American Thoracic Society, and European Respiratory Society provided an updated classification system for lung adenocarcinoma.9 More specific subclassifications of lung tumors from cytological samples and biopsies have been provided by the World Health Organization (WHO) Classification of Lung Tumors of 2015,10 which incorporated immunohistochemical and genetic aspects of tumor subtypes (Figure 1).

Stage at diagnosis (defined by the American Joint Commission on Cancer TNM staging system: tumor size, regional lymph node involvement, and the presence of metastasis),12 molecular characterization, and histologic subtype are important factors to the successful treatment plan development for lung cancer.11 According to the American Society of Clinical Oncology (ASCO) provisional clinical opinion on genomic testing in patients with advanced cancer, biomarker testing should be conducted to assess for gene alterations in an effort to make appropriate treatment decisions.13 (Figure 2).

Diagnosis/Staging—Best Practices

Lung cancer navigators play an important role in expediting the staging workup process and care coordination of specialty appointments. Navigators also have a major role during this time based on potential loss to follow-up of individuals with suspicious screening results.15 The navigator’s presence at each new coordinated appointment with multidisciplinary providers is important to summarize and synthesize the information obtained during the visit with the patient and their caregiver.16 If the lung navigator is unable to be present for the face-to-face appointment, patients are encouraged to call the navigator to ask questions about their lung cancer type, stage, and plans for treatment following discussion with the physician. It is often the navigator who will make time to provide education to patients and caregivers in both written and verbal formats.17

Specifically for patients with SCLC, lung cancer navigators often discuss palliative care, hospice, and why certain treatments are not possible options.16 For these patients, lung cancer navigators should reiterate the information that patients have received from their oncologists. Navigators also try to expedite the time from diagnosis to treatment as much as possible. Finally, navigators can support the patient in setting treatment planning goals, facilitate improved communication with healthcare providers, and provide emotional support to the patient and caregiver.16


The main challenge related to diagnosis/staging of lung cancer is related to time, which includes time related to lung cancer navigator activities and time to diagnosis. In a large study based on a commercially insured population of over 15,000 individuals, the mean time from the initial diagnosis of a pulmonary nodule to the first workup was 8 months.18 Due to the vague, nonspecific nature of presenting symptoms, timely diagnosis is impeded, as patients receive treatment for less significant illnesses.19 In health systems where specialists are spread across various locations, transportation may pose a substantial barrier to accessing care. Advanced-stage lung cancer requires a multidisciplinary approach, which may contribute to additional barriers. Lack of continuity between the emergency department and the primary care physician (PCP) may contribute to delays in lung cancer diagnosis. There may be variation among radiologists in reporting incidental pulmonary nodules; the radiologist may omit incidental pulmonary nodule findings in the impression section, especially if there are other important findings; inadequate clinical history may be provided to the radiologist that may lead to low prioritization of an incidental pulmonary nodule on CT scans; or members of the care team may be unaware that follow-up is appropriate after pulmonary nodules have been detected.19 Patients have also reported that barriers to a lung cancer diagnosis include delays in scheduling appointments, waiting times, getting referrals, distance and access to providers, cost of treatment, and socioeconomic status.20

Best Practices and Gaps in Biomarker Testing

Biomarker Testing—Best Practices

Best practices may be related to expediting biomarker testing at the time of diagnosis as well as with rebiopsy at the time of progression, including consideration of performing a liquid biopsy (ctDNA testing). Lung cancer navigators are instrumental in the coordination of biomarker testing and providing patient education on the importance of waiting for results prior to embarking on a systemic therapy plan.16 It is important for navigators to let patients know that there may be more than one option for biomarker testing. Navigators can also help ensure that shared decision-making occurs on treatment and after biomarker testing.21

Biomarker Testing—Gaps

Gaps regarding biomarker testing for patients with advanced lung cancer are related to tissue acquisition and education for patients/caregivers and providers. Small biopsy samples, insufficient tissue amounts, and the increasing number of genes involved in biomarker testing continue to provide challenges to determining optimal treatment selection. Physician education is needed on the increasing number of genes requiring testing and consideration of the small amounts of available tumor tissue. Patient education is also needed on the availability/appropriateness of certain biomarker testing that they may request based on information they have seen in the media. Some institutions have created a role for financial navigators, who may focus on medications, financial assistance programs, or provide other counseling and assistance to help patients receive treatments.16

Best Practices and Gaps in Multidisciplinary Team Involvement and Treatment Planning

The cornerstone to lung cancer care, multidisciplinary care enhances provider communication, improves clinical outcomes, and optimizes patient experience.22 Multidisciplinary teams may include a pulmonologist, medical oncologist, radiation oncologist, thoracic surgeon, interventional pulmonologist, radiologist, interventional radiologist, pathologist, palliative care specialist, clinical nurse specialist/nurse support, navigator, social worker, team coordinator, psychologist, clinical trials coordinator, nutritionist, and physical/occupational therapist (Figure 3).23 In the community setting, members may depend on available specialists in the area.

Multidisciplinary Team Involvement and Treatment Planning—Best Practices

The impetus for multidisciplinary team involvement in treatment planning highlights patient-centered care, specifically as it pertains to optimizing communication and collaboration among specialties to enhance the patient experience across the disease trajectory. According to Denton and Conron, “Staging accuracy, access to diagnostic investigations, improvements in clinical decision making, better utilization of radiotherapy and palliative care services, and improved quality of life for patients” are measurable outcomes witnessed by cohesive multidisciplinary lung cancer teams.22 Best practices for lung cancer navigators include care coordination between specialists, whether coordinated on the same day or through the use of an established multidisciplinary clinic, and attending and planning shared decision-making visits with patients.16 Community hospitals may not have a multidisciplinary clinic, but all late-stage patients should be presented in a multidisciplinary tumor board. This is extremely important in these patients because multimodality care will be needed. For organizations that have clinical research, it is important to ensure navigators know which research protocols are currently open and available for a particular patient based on their diagnosis and their staging.

Multidisciplinary Team Involvement and Treatment Planning—Gaps

One of the most profound gaps in multidisciplinary team involvement is witnessed in community hospitals, in which a scarcity exists of specialists or expertise to conduct advanced diagnostic testing or treatment. The lack of a consistent electronic medical record across hospital systems makes it difficult to access patient information. Asking patients to retrieve and bring their own records may be met by patients not being able to obtain the records, the patients forgetting to pick up the records, or a language barrier may be present. This is further challenged when seeing patients who have previously been diagnosed, and there is a lack of medical records accompanying the patient to the visit.16

Barriers to shared decision-making may be related to clinician factors. In a study of clinicians managing patients with early-stage NSCLC, 12% of radiation oncologists, 20% of pulmonologists, and 26% of surgeons reported that they regularly use shared decision-making during routine patient care; however, a large proportion report that they do believe patients should be involved in the decision process related to treatment.24

Best Practices and Gaps in Side Effect Management, Expectations, and Adherence

Side Effect Management, Expectations, and Adherence—Best Practices

Best practices for navigators include patient education, side effect management, setting expectations, and promoting treatment adherence. Despite the opportunity for patients to attend a class individualized to the treatment regimen, it is important that navigators reinforce to patients the expected treatment side effects, how to self-manage, as well as when to call their medical team.16

Navigators along with pharmacists play a key role in patient/caregiver engagement in the education process that cannot be overstated. Patients may be eligible for oral medications that will need in-depth discussions on adherence and side effects. Patient education is key to treatment adherence and patient compliance. In fact, results from a systematic review demonstrated that higher health literacy was associated with increased medication adherence.25

Side Effect Management, Expectations, and Adherence—Gaps

Once a patient begins treatment, a barrier may exist with understanding the role delineation of the clinic/office nurse versus the lung cancer nurse navigator.16 It is important to encourage patients to report side effects to the nurse in the practice, but the patient may more readily call the lung cancer navigator; therefore, it is important to establish a plan and a rapport with the clinic nurses. Some lung cancer navigators no longer have a role once the patient is on treatment, which further highlights the importance of understanding and explaining the roles of the navigator and clinic nurses to patients. Together, these issues contribute to difficulties for patients to understand who to turn to for optimization of side effect management and treatment adherence.

Best Practices and Gaps in Barrier Assessment, Providing Support Services, and Community Resources

Barrier Assessment, Providing Support Services, and Community Resources—Best Practices

Best practices for lung cancer navigators include addressing barriers, making referrals, and coordinating support services. Services/referrals may include financial counselors, psychologists, oncology rehabilitation, pulmonary rehabilitation, palliative care, social workers, dietitians, pharmacists, and advocacy/nonprofit resources.26 Pulling in those resources is so valuable because navigators know the patients very well.16 Usually, other clinicians have not developed that rapport with the patient/caregiver, nor have they been able to delve deeper into their personal life. Many national advocacy organizations can help patients with lung cancer and their caregivers with education, resources, and support.27 Support groups may also be a resource for patients and caregivers.16

Some institutions have implemented palliative care for all patients with advanced lung cancer.16 Therefore, when they are on active systemic therapy, regardless of type (IV vs oral), and they have been on treatment for a few months and have gotten through their first restaging CT scan, patients are automatically referred to palliative care.

Barrier Assessment, Providing Support Services, and Community Resources—Gaps

Barriers may include a lack of available navigators and/or time to properly assess and refer patients to needed support services or resources.16 Another barrier exists regarding the initial reaction to a mention of palliative care, as many patients and their families associate palliative care with hospice.21 Some navigators may also need to set boundaries across departments, as the role of lung cancer navigators may not be well understood, resulting in a lack of time to effectively navigate patients. Also, barriers identified may require patient resources that are not available within the healthcare system, or locally within the community (ie, transportation service, food pantries, social work, or financial counseling, etc).21

Best Practices and Gaps in Survivorship

Survivorship—Best Practices

Best practices related to survivorship include transitioning the patient back to their PCP for ongoing follow-up and providing resources for community outreach and tobacco cessation. For some survivors, it may be appropriate for them to re-enter a screening program as well.16 Patients sent back to their PCP are typically sent back for long-term cancer screening. Results from a prospective study of 517 current smokers who were diagnosed with early-stage NSCLC demonstrated that progression-free and overall survival were significantly prolonged among patients who had quit smoking versus those who continued smoking.28 Adjusted analyses revealed that smoking cessation continued to be associated with decreased risk for disease progression and mortality, and importantly, similar effects were observed among patients with earlier and later cancer stages and among mild-to-moderate and heavy smokers.28


Advances in screening and treatment modalities have increased the number of lung cancer survivors. Although survivorship care plans are standard practice, implementation challenges exist. Survivorship care plans are meant to summarize a lung cancer survivor’s diagnosis and treatment, provide direction for follow-up care and monitoring, including surveillance frequency, highlight long-term and latent side effects of therapy, and enhance physician-to-physician communication.29 The first gap in survivorship care is a lack of agreement as to when and by whom the survivorship discussions should be initiated. Institutions need to develop pathways and processes on how and when to introduce and optimize survivorship discussions with patients and caregivers.

Another gap centers on survivorship education, from both a patient and a primary care perspective, specifically on late effects of cancer treatment, importance of implementing healthy lifestyle changes, and rationale for adapting surveillance guidelines.30 The ASCO evidence-based guidelines speak to some of the physical and emotional needs that lung cancer survivors face and outline interventions to aid in the resolution of issues, including anxiety, depression, and fatigue. These guidelines should be incorporated into a communication plan between medical oncology and primary care.31-33

Best Practices and Gaps Regarding End of Life

Although there have been advances in detection, diagnosis, and treatment of lung cancer, many patients will die within 5 years of diagnosis.34 The importance of involving palliative care early in the process has also been emphasized by data demonstrating improved quality of life and prolonged survival among patients receiving palliative care at the same time as cancer treatment.35 Navigators should initiate end-of-life discussions when a patient or family member asks.16 It may also be appropriate to bring up these discussions if conflict is observed between the patient and their family. Prognostic awareness is also key for navigators, observing whether patients have been hospitalized, have progressing symptoms, or have decreased appetite, which may also inform appropriateness of end-of-life discussions.16

Some barriers to end-of-life care may be a patient’s unwillingness to bring it up with their physician or family conflict.16 Among oncologists, there has been an increasing trend to continue aggressive treatment for patients in their last month of life, and due to the rapid advancement of therapeutic options, this trend may continue.36 These barriers highlight the importance of a lung cancer navigator acting as an advocate for patients approaching end of life.


Navigators have various roles and responsibilities throughout the lung cancer continuum; therefore, it is important to discuss best practices to incorporate into practice, as well as the gaps, with the acknowledgment that there are challenges of navigation in late-stage lung cancer. To assist with care coordination, navigators need to identify and establish processes to expedite diagnostic workup and staging. Navigators, in tandem with the multidisciplinary team, provide patients and their caregivers with disease-specific information, treatment recommendations based on patient values and wishes, and possible side effect profiles in order for patients to engage in shared decision-making. When assessing barriers and connecting patients/caregivers with the appropriate resources, navigators facilitate access to care in a timely manner. Lung cancer navigators empower survivors to become self-advocates as well as help transition patients from cancer-directed care to end of life when appropriate.


  1. American Cancer Society. Key Statistics for Lung Cancer. Updated January 12, 2021. Accessed March 30, 2022.
  2. National Cancer Institute. Cancer Stat Facts: Lung and Bronchus Cancer. Accessed March 30, 2022.
  3. National Cancer Institute. Non-Small Cell Lung Cancer Treatment (PDQ). Accessed September 7, 2021.
  4. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2020. CA Cancer J Clin. 2020;70:7-30.
  5. Walter FM, Rubin G, Bankhead C, et al. Symptoms and other factors associated with time to diagnosis and stage of lung cancer: a prospective cohort study. Br J Cancer. 2015;112(suppl 1):S6-S13.
  6. Pennell NA, Arcila ME, Gandara DR, West H. Biomarker testing for patients with advanced non-small cell lung cancer: real-world issues and tough choices. Am Soc Clin Oncol Educ Book. 2019;39:531-542.
  7. Lim C, Tsao MS, Le LW, et al. Biomarker testing and time to treatment decision in patients with advanced nonsmall-cell lung cancer. Ann Oncol. 2015;26:1415-1421.
  8. Collar N, O’Neill B, Parham K, et al. Identifying best practices and gaps in early-stage lung cancer: from screening and early detection through resectable disease treatment. J Oncol Navig Surviv. 2022;13(2):51-59.
  9. Tang ER, Schreiner AM, Pua BB. Advances in lung adenocarcinoma classification: a summary of the new international multidisciplinary classification system (IASLC/ATS/ERS). J Thorac Dis. 2014;6(suppl 5):S489-S501.
  10. Travis WD, Brambilla E, Nicholson AG, et al. The 2015 World Health Organization classification of lung tumors: impact of genetic, clinical and radiologic advances since the 2004 classification. J Thorac Oncol. 2015;10:1243-1260.
  11. Šutić M, Vukić A, Baranašić J, et al. Diagnostic, predictive, and prognostic biomarkers in non-small cell lung cancer (NSCLC) management. J Pers Med. 2021;11:1102.
  12. Amin MB, Greene FL, Edge SB, et al. The eighth edition AJCC cancer staging manual: continuing to build a bridge from a population-based to a more “personalized” approach to cancer staging. CA Cancer J Clin. 2017;67:93-99.
  13. Chakravarty D, Johnson A, Sklar J, et al. Somatic genomic testing in patients with metastatic or advanced cancer: ASCO Provisional Clinical Opinion. J Clin Oncol. 2022;40:1231-1258.
  14. Addeo A, Passaro A, Malapelle U, et al. Immunotherapy in non-small cell lung cancer harbouring driver mutations. Cancer Treat Rev. 2021;96:102179.
  15. Braun KL, Kagawa-Singer M, Holden AEC, et al. Cancer patient navigator tasks across the cancer care continuum. J Health Care Poor Underserved. 2012;23:398-413.
  16. Data on file, REF-144096, AstraZeneca Pharmaceuticals LP.
  17. Doerfler-Evans RE. Shifting paradigms continued—the emergence and the role of nurse navigator. J Thorac Dis. 2016;8(suppl 6):S498-S500.
  18. Pyenson BS, Bazell CM, Bellanich MJ, Caplen MA, Zulueta JJ. No apparent workup for most new indeterminate pulmonary nodules in US commercially-insured patients. J Health Econ Outcomes Res. 2019;6:118-129.
  19. Blagev DP, Lloyd JF, Conner K, et al. Follow-up of incidental pulmonary nodules and the radiology report. J Am Coll Radiol. 2014;11:378-383.
  20. Cassim S, Chepulis L, Keenan R, et al. Patient and carer perceived barriers to early presentation and diagnosis of lung cancer: a systematic review. BMC Cancer. 2019;19:25.
  21. Data on file, REF-145658, AstraZeneca Pharmaceuticals LP.
  22. Denton E, Conron M. Improving outcomes in lung cancer: the value of the multidisciplinary health care team. J Multidiscip Healthc. 2016;9:137-144.
  23. Hardavella G, Frille A, Theochari C, et al. Multidisciplinary care models for patients with lung cancer. Breathe (Sheff). 2020;16:200076.
  24. Mokhles S, Maat APWM, Aerts JGJV, et al. Opinions of lung cancer clinicians on shared decision making in early-stage non-small-cell lung cancer. Interact Cardiovasc Thorac Surg. 2017;25:278-284.
  25. Holden CE, Wheelwright S, Harle A, Wagland R. The role of health literacy in cancer care: a mixed studies systematic review. PloS One. 2021; 16:e0259815.
  26. Otis-Green S, Sidhu RK, Del Ferraro C, Ferrell B. Integrating social work into palliative care for lung cancer patients and families: a multidimensional approach. J Psychosoc Oncol. 2014;32:431-446.
  27. CONQUER, the patient voice. 6th Annual Patient Support Guide to Cancer Support Services. Accessed March 30, 2022.
  28. Sheikh M, Mukeriya A, Shangina O, et al. Postdiagnosis smoking cessation and reduced risk for lung cancer progression and mortality: a prospective cohort study. Ann Intern Med. 2021;174:1232-1239.
  29. Stricker CT, Jacobs LA, Risendal B, et al. Survivorship care planning after the Institute of Medicine recommendations: how are we faring? J Cancer Surviv. 2011;5:358-370.
  30. Halpern MT, Viswanathan M, Evans TS, et al. Models of cancer survivorship care: overview and summary of current evidence. J Oncol Pract. 2015; 11:e19-e27.
  31. Paice JA, Portenoy R, Lacchetti C, et al. Management of chronic pain in survivors of adult cancers: American Society of Clinical Oncology clinical practice guideline. J Clin Oncol. 2016;34:3325-3345.
  32. Andersen BL, DeRubeis RJ, Berman BS, et al. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: an American Society of Clinical Oncology guideline adaptation. J Clin Oncol. 2014;32:1605-1619.
  33. Bower JE, Bak K, Berger A, et al. Screening, assessment, and management of fatigue in adult survivors of cancer: an American Society of Clinical Oncology clinical practice guideline adaptation. J Clin Oncol. 2014;32:1840-1850.
  34. Lim RB. End-of-life care in patients with advanced lung cancer. Ther Adv Respir Dis. 2016;10:455-467.
  35. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010;363:733-742.
  36. Earle CC, Neville BA, Landrum MB, et al. Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol. 2004;22:315-321.

In partnership with The Lung Ambition Alliance, Sponsored by AstraZeneca

The Lung Ambition Alliance, a global coalition with partners across disciplines in over 50 countries, was formed to combat lung cancer through accelerating innovation and driving forward meaningful improvements for people with lung cancer. We do this by advocating for improved approaches in three areas: screening and early diagnosis, accelerated delivery of innovative medicine, and improved quality care.

Related Articles
An Integrative Education Program for Patients With Endometrial and Ovarian Cancer and Their Caregivers: Analyses of Research Article Literature
Debra Rundles, MSN, RN, OCN, ONN-CG, Emily Gentry, BSN, RN, HON-ONN-CG, OCN
December 2023 Vol 14, No 12
As part of an AONN+ women’s health initiative, we present findings from a comprehensive search of the published scientific literature for physical, psychological, social, and spiritual well-being of patients diagnosed with endometrial and ovarian cancer and their caregivers.
Sotorasib Conveys Long-Term Benefits in Patients With KRAS G12C–Mutated Non–Small Cell Lung Cancer
Web Exclusives
Analysis of the long-term results of the CodeBreak 100 clinical trial showed that sotorasib demonstrated long-term efficacy, in particular among patients with low initial circulating tumor DNA values.
NGS Testing More Cost-Effective Than SGT in Oncology
Web Exclusives
A recent study showed that next-generation sequencing testing has superior cost benefit when compared with single-gene testing for multiple cancer types, including non–small cell lung cancer.
Last modified: August 10, 2023

Subscribe Today!

To sign up for our print publication or e-newsletter, please enter your contact information below.

I'd like to receive:

  • First Name *
    Last Name *
    Profession or Role
    Primary Specialty or Disease State