The value of immunotherapy for survivors of stage IV non-small cell lung cancer: patient perspectives on quality of life

Abstract

Purpose The aim of this study was to examine what personally mattered to 24 patients who received immuno-oncology (IO) therapy for stage IV non-small cell lung cancer (NSCLC), as well as their families and friends, to understand how they evaluated their cancer treatments and the determinants of the quality of life (QoL) of long-term survivors. Methods Ethnographic research was conducted with 24 patients who had responded to IO (pembrolizumab, nivolumab, atezolizumab, or durvalumab) for stage IV NSCLC, and their families and friends, evenly split among field sites in Denmark, the USA, and the UK. Data were collected using in-depth qualitative interviews, written exercises, and participant observation. Data analysis methods included interpretative phenomenological analysis, coding, and the development of grounded theory. Researchers spent 2 days with participants in their homes and accompanied them on health-related outings.Results Our findings reveal that long-term survivors on IO experienced their journey in two phases: one in which their cancer had taken over their lives mentally, physically, and spiritually, and another in which their cancer consumed only a part of their everyday lives. Patients who survived longer than their initial prognosis existed in a limbo state in which they were able to achieve some semblance of normalcy in spite of being identified as having a terminal condition. This limbo state impacted their life priorities, decision-making, experience of patient support, and health information-seeking behaviors, all of which shaped their definitions and experience of QoL.Conclusions The results of this study, which identify the specific challenges of living in limbo, where patients are able to reclaim a portion of their pre-cancer lives while continuing to wrestle with a terminal prognosis, may inform how cancer research can more effectively define and measure the QoL impacts of IO treatments. Also, they may identify approaches that the cancer community can use to support the needs of patients living in a limbo state. These experiences may not be adequately understood by the cancer community or captured by existing QoL measures, which were designed prior to the emergence of IO and without sufficient incorporation of contextual, patient-driven experience. Implications for Cancer Survivors Increased awareness of the specific experiences that come with long-term survival on IO may direct how resources should be spent for cancer support for patients and their families. Expanding how QoL is evaluated based on patients' lived experiences of IO can reflect a more accurate depiction of the treatment's benefits and harms.

Parallel extreme gradient boosting classifier for lung cancer detection

“…Recognition and prediction the lung cancer in the earliest stage can increase the survival rate of the patients. Lung cancer has no symptoms in the early stages [2], [3], so it needs more than traditional detection to detect it. Cancer can be defined as a disease of altered gene expression.…”

Experiences of cancer immunotherapy with immune checkpoint inhibitors (ExCIm)—insights of people affected by cancer and healthcare professionals: a qualitative study protocol

“…23 However, findings from international studies have also highlighted the lasting and profound existential-related, social-related, financialrelated, treatment-related and disease-related uncertainities, adverse effects on physical and emotional health and well-being, and a perceived need among some for enhanced informational support and guidance. 23 24 26 41 42 Shared decision-making, where clinicians support patients to share responsibility for decisions, based on the best available evidence and considering the strengths and risks of various treatment options, 43 positively affects patients' treatment experiences 44 and 45 QoL in cancer care. However, it has been noted that existing cancer decision-making pathways for some patients focus on clinical management of disease rather than patients' preferences and priorities for cancer treatment.…”

“…41 Patients receiving immunotherapy and their informal carers have also experienced uncertainty related to communication and treatment decisionmaking. 24 47 Indeed, patients reported feeling hampered by a lack of clear information, 23 and carers experienced unclear communication regarding immunotherapy treatment. 47 Findings from a recent study 48 indicated that most recommendations for ICI treatment were made by physicians, though patients generally preferred to have the final say regarding treatment commencement.…”

Needs of Lung Cancer Patients Receiving Immunotherapy and Acceptance of Digital and Sensor-Based Scenarios for Monitoring Symptoms at Home—A Qualitative-Explorative Study

“…In a qualitative study by Park et al, the experience of immunotherapy was divided in two phases: (1) the “avalanche”, a period of intense frustration and disorientation in search of effective treatment following diagnosis in which the disease determines large parts of one’s life and (2) the “living longer” phase, a timeframe characterized by a steady treatment plan without progression or adverse events in which components of the old life can be regained. Overall, immunotherapy was described as a positive experience, but also means a living in “limbo” and “cycling” between the two phases [ 13 ]. Many patients express a strong need for adequate information throughout the entire course of the disease and therapy.…”