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.
This gallery is a photographic representation of six ethnographic encounters from a 2018 study of people living with Stage-IV lung cancer. Our photographs capture their lives beyond the hectic whirl of machines, medications, and medical workers, instead bringing radically ordinary expressions of agency into focus. For our subjects, the paradoxical condition of living with a terminal disease prompts a deep and ongoing reflection on the routines of everyday life. These become symbols of loss and reclamation of agency: while ruptures in routines can reveal the limitations imposed by cancer treatment, for others daily activities come to signify cancer kept in check. These photographs and narratives bear witness to those meaningful mundanities by depicting artifacts of past lives and evidence of new normals. Our aim is to show the role that rich, sensorial photography can play in presenting visual evidence for what matters most to the patient throughout treatment.Our photographs also demonstrate the limits imposed on photography by GDPR-regulated healthcare projects, where we must endeavor to capture the lives of people without showing their faces. We found that the very regulatory constraints that threatened to dehumanize our subjects also allowed us to bring their lives into fuller context. Instead of abandoning photography, we depicted the objects, relationships, and places that were most significant to those we met with. These totemic depictions illustrated their relationship with cancer, as well as their shifting evaluations concerning quality of life throughout their cancer journey.Photo: "The Worst Thing is All the Waiting" Credit Thomas Hughes Rebekah Park currently works as a manager at ReD Associates, and holds a PhD in anthropology from UCLA. Jacob McAuliffe currently works as a consultant at ReD, and holds an MA in history from Yale University.
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