Prognostic communication about lung cancer in the precision oncology era: A multiple‐perspective qualitative study

Abstract

BACKGROUND:Although most patients with cancer prefer to know their prognosis, prognostic communication between oncologists and patients is often insufficient. Targeted therapies for lung cancer improve survival yet are not curative and produce variable responses. This study sought to describe how oncologists communicate about prognosis with patients receiving targeted therapies for lung cancer. METHODS: This qualitative study included 39 patients with advanced lung cancer with targetable mutations, 14 caregivers, and 10 oncologists. Semistructured interviews with patients and caregivers and focus groups or interviews with oncologists were conducted to explore their experiences with prognostic communication. One oncology follow-up visit was audio-recorded per patient. A framework approach was used to analyze interview transcripts, and a content analysis of patient-oncologist dialogue was conducted. Themes were identified within each source and then integrated across sources to create a multidimensional description of prognostic communication. RESULTS: Six themes in prognostic communication were identified: Patients with targetable mutations develop a distinct identity in the lung cancer community that affects their information-seeking and self-advocacy; oncologists set high expectations for targeted therapy; the uncertain availability of new therapies complicates prognostic discussions; patients and caregivers have variable information preferences; patients raise questions about progression by asking about physical symptoms or scan results; and patients' expectations of targeted therapy influence their medical decision-making. CONCLUSIONS: Optimistic patient-oncologist communication shapes the expectations of patients receiving targeted therapy for lung cancer and affects their decision-making. Further research and clinical guidance are needed to help oncologists to communicate uncertain outcomes effectively.

Understanding communication between patients and healthcare professionals regarding comprehensive biomarker testing in precision oncology: A scoping review

“…The cancer type was mostly unspecified (20; 47.6%) or patients with different types of cancer were included in the study (13; 31.0%) (Table 2; Table S1). Also, where specified, much of the available data were based on well‐educated patients of European descent (or “non‐Hispanic White”) 17,18,21,22,26–33 . Additionally, evaluation of populations in two review articles showed an underrepresentation of other ethnic and minority groups, which was also supported by author statements in these publications 34,35 …”

“…Several overarching challenges surrounding cBT‐related communication were identified: the patients' general distress due to cancer diagnosis, 12,19,21,37,38,40,41 limited health literacy and lack of patients' understanding of genomic concepts, 12,17,19,20,37,38,42,43 uncertain significance of some cBT results, 38,40,44 a mismatch between high patient expectations and perceived benefit of cBT versus actual testing outcomes 12,20,33 and a potential lack of actionable alterations and/or therapeutic options based on a patient's genomic profile 12,20,33,37,41,43 …”

“…In return, HCPs frequently reported having difficulties explaining cBT‐related uncertainties in a way that patients would understand, especially regarding secondary findings or VUSs 20,21,45,46 . Two studies described that the oncologists preferred focusing on actionable alterations as an anchor to explain the significance of non‐actionable findings 22 or presented actionable alterations too optimistically 21 . Petrillo et al.…”

“…Three studies showed that well informed patients with a high level of genomics knowledge and/or previous genetic testing experience were more interested in cBT-related aspects. 19,21,28 High levels of patient-centered communication and shared decision-making were reported in three other studies, 19,31,43 of which two found that patients with higher disease recurrence scores were more likely to discuss treatment-related topics and be equal partners in the decision-making processes with the HCPs. 31,43 Patients' families and caregivers were reported to significantly influence the decision-making process and cBT uptake.…”

“…71 Equally important, the possibility of receiving secondary/germline/incidental findings and the related communication are critical. 17,21,26,37,72 Given the potential impact for family members and caregivers, patients' preferences for involving family members need to be assessed 17,26,30,37 to develop harmonized communication processes. Communication and decision aids might support both HCPs and patients.…”