Advanced non-small cell lung cancer (NSCLC) takes an immense toll on patients’ lives, including disabling physical symptoms and high levels of psychological distress. According to Howard Leventhal’s Self-Regulatory Model of Illness Behavior, patients’ perceptions of their illness (e.g., views about the extent to which the illness affects one’s life, the expected duration of one’s illness, and the ability to control one’s illness with treatment) impact important physical and psychological outcomes. This study aimed to determine whether patterns (i.e., “profiles”) of illness perceptions among patients newly diagnosed with advanced NSCLC explain variability in lung cancer symptom severity (e.g., cough, dyspnea, pain) and psychological distress (i.e., anxiety, depression) during treatment. Patients newly diagnosed with stage-IV NSCLC (N = 186) were enrolled in an observational study. The patients completed a self-report measure of illness perception dimensions—consequences, timeline, personal control, treatment control, identity (symptoms), coherence (understanding), concern, and emotional responses—at baseline, as well as measures of overall physical symptom severity, cough severity, dyspnea severity, pain severity, self-rated health status, anxiety symptoms, and depressive symptoms at baseline and monthly over an eight-month follow-up period during which patients received oncological treatment. Latent profile analysis categorized patients into groups sharing similar illness perceptions at baseline. Linear mixed models tested the baseline illness perception profiles as predictors of outcome trajectories during the follow-up period. Analyses controlled for sociodemographic and disease characteristics. Three illness perception profiles emerged: patients with relatively positive perceptions of their illness (n = 41), patients with high levels of concern about their illness despite relatively positive ratings of other illness perception dimensions (n = 62), and patients with relatively negative perceptions of their illness (n = 83). Over the course of the eight-month follow-up period, patients reported improvements in overall physical symptom severity, cough severity, anxiety symptoms, and depressive symptoms, whereas dyspnea severity, pain severity, and self-rated health status did not change. During this period, patients with more negative illness perceptions at baseline reported the most severe lung cancer symptoms, including overall physical symptoms, dyspnea, and pain, the poorest self-rated health status, and the highest levels of anxiety and depression. There were no interactions between illness perception profile and time. Illness perception profiles at lung cancer diagnosis explain significant variability in subsequent disease outcomes. Patients with relatively negative perceptions of their lung cancer experience the highest burden of lung cancer symptoms, including dyspnea and pain, the poorest health-related quality of life, and the greatest psychological distress. Patients with more positive perceptions of their lung cancer at diagnosis are at significantly lower risk for adverse outcomes during treatment. The high frequency of a “negative” illness perception profile suggests that a significant proportion of individuals newly diagnosed with advanced NSCLC are in need of prompt referral for psychosocial intervention if the benefits of life-extending targeted and immunotherapies are to be maximized and if patients are to enjoy an optimal quality of life.
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