Development of a Patient Centered Outcome Questionnaire for Advanced Lung Cancer Patients

Abstract

Symptom research with advanced lung cancer patients has primarily focused on symptom severity, frequency, and distress; yet, little is known about advanced lung cancer patients’ priorities and success criteria for symptom improvement. To address these gaps in the literature, this study examined these outcomes using a modified Patient Centered Outcomes Questionnaire (PCOQ), which has largely been used with adults with chronic pain. Advanced lung cancer patients (N = 102) were recruited from the Indiana University Simon Cancer Center to participate in a one-time self-report survey, including demographic and medical questionnaires, symptom treatment history, standardized measures of symptom severity and quality of life, and the modified PCOQ focused on eight common symptoms in advanced lung cancer. Cancer information was collected from medical records. My primary aim was to evaluate the construct validity of the PCOQ. As hypothesized, symptom severity ratings on the PCOQ were positively correlated with standardized assessments of the same symptoms as well as functional status. Greater severity of most symptoms on the PCOQ was also correlated with worse quality of life, and greater severity of four symptoms was correlated with having more medical comorbidities. Positive, moderate correlations were found between the severity and importance of seeing improvement in cough, fatigue, sleep problems, and pain on the PCOQ. Patients considered low levels of symptom severity to be acceptable following symptom treatment; no differences were found across the eight symptoms. Latent profile analysis identified four patient subgroups based on the importance of seeing improvement in each of the symptoms: (1) those who rated all symptoms as low in importance (n = 12); (2) those who rated bronchial symptoms and sleep problems as low in importance and all other symptoms as moderately important (n = 29); (3) those who rated nausea and emotional distress as low in importance and all other symptoms as moderately important (n = 23); and (4) those who rated all symptoms as highly important (n = 33). These subgroups were unrelated to demographic and clinical factors, except for functional status. Findings suggest that symptom severity and importance are related yet distinct aspects of the advanced lung cancer symptom experience. Furthermore, patients have heterogeneous priorities for symptom management, which has implications for tailoring treatment.