Patient-Reported Quality of Life and Goals of Care in the Treatment of Locally Advanced Non–small Cell Lung Cancer

Abstract

Successful treatment with chemoradiation among patients with locally advanced non-small cell lung cancer (LA-NSCLC) has generally focused on disease-specific outcomes and grade 3 or higher toxicities. However, “successful treatment” may mean something different to patients. The purpose of this study was to better understand how patients and caregivers perceived “successful treatment” of lung cancer. We elicited input from lung cancer patients to understand which endpoints were important to them and their caretakers when making treatment decisions. We did this through (1) individual interviews and a small focus group facilitated by an oncologic psychologist with patients, caregivers, and support group attendees to provide qualitative data as well as meaningful questions and endpoints for the survey; and 2) a self-report survey distributed to survivors and caregivers in collaboration with the Lung Cancer Alliance and American Lung Association. We used 5 free-text and 5 ranking questions to make respondents clearly specify their priorities in making treatment decisions and which ECOG performance status (PS) they felt would constitute a “successful treatment.” A total of 33 patients and 31 caregivers responded to the survey. Prior to treatment, 93% of patients (or the caregiver’s designated patients) had ECOG PS 0-2. Among 54 responses, cancer cure was the highest priority in making treatment decisions (ranked 1st or 2nd by 64%), followed closely by quality of life after treatment (ranked 1st or 2nd by 44%). When provided with descriptions of ECOG PS categories, 70% of patients felt that a PS 4 (completely dependent on others; spending the entire day in bed or chair) would be futile even if the cancer were cured. Nearly all (94%) felt that an ECOG PS of 2 (able to take care of self, such as bathe and dress; also up and about more than half the day) was successful, even if the cancer recurred 1-2 years after treatment (92%). A 3- to 7-day hospital stay for pneumonia was considered intolerable by 30%. Half indicated that a need for continuous oxygen would be an unacceptable outcome. In making LA-NSCLC treatment decisions, patients and their caregivers focus on independence of self-care. An ECOG PS 3 was the dividing line between acceptable (ECOG 0 – 2) and futile (ECOG 3+) treatment outcomes. Half of those surveyed indicated that continuous oxygen use would constitute an unsuccessful treatment outcome and 30% felt that a short hospital stay was not acceptable. These findings should drive the design of PRO-QOL assessments in future therapeutic trials for this disease, and inform discussion between treating physicians and their patients and caregivers about survivorship.