World Lung Cancer Day: The Importance of Capturing Patient Experiences

Industry Insights




Dr Alicia Hughes     Dr Laura Meade


Non–small-cell lung cancer accounts for over 80% of all lung cancers. The majority of patients present with late-stage disease.1


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.1

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 mood.4 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 hopelessness.7 Sexual dysfunction is another issue reported by patients in the literature, yet it is rarely screened for in routine practice.8,9 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 NSCLC.10 This is reflected in the increasing number of clinical trials in NSCLC which include PRO endpoints.11


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 pain.11 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 dysfunction.7



Use of NSCLC PROs to inform patient support services and improve routine clinical practice


There is increasing interest in integrating PROs to improve patient care.12 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 care.2


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 cancer.13 Psychological interventions have also been shown to be effective in improving distress, QoL, dyspnea, anxiety and depressive symptoms in people with lung cancer.13



Supportive care aims to promote and sustain well-being, while enhancing the patient’s capacity to cope with the demands of diagnosis and treatment.14



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.



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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