World Lung Cancer Day: The Importance of Capturing Patient Experiences
Non–small-cell lung cancer accounts for over 80% of all lung cancers. The majority of patients present with late-stage disease1.
Non-small cell lung cancer (NSCLC) is the most common type of lung cancer in the United States.1 Treatment for NSCLC may include surgery, chemotherapy, radiation, and immunotherapies. The arrival of new treatment options such as oral chemotherapies have proven to help people with lung cancer live longer.
With the availability of new treatment options, there is an increased need to understand the patient’s treatment experience, beyond traditional efficacy and safety measures, in both clinical trials and in the real world.2
Patient reported outcomes
Patient reported outcome (PRO) measures capture the patient’s direct personal experience of their physical, mental and social health.3 Development of new PRO measures is a multipronged process, which starts with understanding the concept of interest from the target patient population, before establishing content validity and measurement properties. PRO measures are used, along with other clinical outcome assessments (COAs), in clinical trials, real world research and clinical practice.
What outcomes are important to patients with NSCLC?
In a qualitative interview study with 40 people with NSCLC, researchers found the most reported symptoms were shortness of breath, fatigue, distress, cough, pain and constipation. The presence of these symptoms interfered with daily activities, treatment adherence, and mood4. These findings are corroborated in quantitative studies showing fatigue, loss of appetite, pain and shortness of breath are significant predictors of lung cancer specific quality of life (QoL)5,6.
The symptoms and impacts reported as most bothersome to patients with NSCLC relate to physical functioning, such as fatigue, dyspnea, and difficulty doing household work and psychosocial symptoms, such as anxiety, depression and hopelessness7. Sexual dysfunction is another issue reported by patients in the literature, yet it is rarely screened for in routine practice8,9. These may indicate areas of unmet needs which warrant more active screening, monitoring, and intervention.
Addressing key patient reported outcomes in clinical trials
Clinicians and regulatory authorities advocate that alleviation of NSCLC-specific symptoms and improvement in health-related QoL should be carefully considered in the treatment of NSCLC10. This is reflected in the increasing number of clinical trials in NSCLC which include PRO endpoints11.
A review of approved medications for NSCLC identified six types of PRO endpoints which are included in clinical trials: overall global QoL, health-related QoL, symptoms, health status, and pain11. These endpoints were measured by several validated instruments, some specific to lung-cancer, though none of which were developed or adapted to capture the experience of patients with NSCLC specifically. This is important given that evidence suggests that existing symptom and QoL instruments for lung cancer do not always capture the issues most important to patients, such as sexual dysfunction7.
Use of NSCLC PROs to inform patient support services and improve routine clinical practice
There is increasing interest in integrating PROs to improve patient care12. PROs help facilitate better communication between patient and healthcare professionals during routine practice and allow clinicians to better monitor symptoms and side-effects and inform treatment decision-making. This is likely to both improve the patient’s QoL and satisfaction with their care2.
The symptoms and difficulties that are most common and troubling for patients can be managed and even improved. For instance, there is evidence to suggest exercise interventions can improve physical strength, function, and fatigue, even among patients with advanced cancer13. Psychological interventions have also been shown to be effective in improving distress, QoL, dyspnea, anxiety and depressive symptoms in people with lung cancer13.
Whilst this is promising, many people with NSCLC lack access to these types of interventions and support. The literature is also lacking on whether patients on newer oral chemotherapy for NSCLC require different or additional support.
Supportive care aims to promote and sustain well-being, while enhancing the patient’s capacity to cope with the demands of diagnosis and treatment14.
This information should be utilised to meet the needs of patients with NSCLC; developing PROs that capture outcomes of importance specific to this population and embedding interventions which support patients holistically.
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Araujo LH, Baldotto CS, Monteiro MR, Aguiar PN, Andrade MC, Longo CL, et al. Patient-centered outcomes in non-small-cell lung cancer: a real-world perspective. Future Oncol. 2021 May 1;17(14):1721–33.
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Whisenant MS, Williams LA, Garcia Gonzalez A, Mendoza T, Shi Q, Cleeland C, et al. What do patients with non–small-cell lung cancer experience? Content domain for the MD Anderson symptom inventory for lung cancer. JCO Oncol Pract. 2020;16(10):e1151–60.
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Reese JB, Shelby RA, Abernethy AP. Sexual concerns in lung cancer patients: an examination of predictors and moderating effects of age and gender. Support Care Cancer. 2011;19(1):161–5.
Reese JB, Shelby RA, Keefe FJ, Porter LS, Abernethy AP. Sexual concerns in cancer patients: a comparison of GI and breast cancer patients. Support Care Cancer. 2010;18(9):1179–89.
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Patel K, Shukla S, Hanlon J, Bell K, Eliason L, Hogea C. HSR21-067: What Patient-Reported Outcomes Are Being Used in Non-small Cell Lung Cancer? A Targeted Literature Review of Randomized Clinical Trials and Regulatory Labeling. J Natl Compr Cancer Netw J Natl Compr Canc Netw. 2021;19(3.5):HSR21-067-HSR21-067.
Basch E, Barbera L, Kerrigan CL, Velikova G. Implementation of patient-reported outcomes in routine medical care. Am Soc Clin Oncol Educ Book. 2018;38:122–34.
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