Objectives: SCLC occurs in 10-15% of the lung cancer patient population. While patient-reported outcome (PRO) instruments exist for lung cancer, none are SCLC-specific. This study aimed to identify symptoms and impacts important to SCLC patients and develop a conceptual model that describes their experience.

Methods: Qualitative concept elicitation interviews were conducted between August and November 2021 with purposively sampled SCLC patients in the US who had received at least 1 line of systemic treatment. Interviews followed an inductive approach, allowing patients to describe their symptom and impact experience, and a deductive approach, in which patients were asked about concepts identified in qualitative lung cancer literature. Consensus-based coding and thematic analysis were conducted using qualitative research software. Concept saturation was assessed in 5 waves and achieved in wave 4.

Results: Twenty-six patients completed interviews. The mean age was 61.3, with males (19.2%) and females (73.1%) represented (3.8% preferred not to answer). Twenty symptoms and 10 physical or role functioning concepts were identified. Disease-related SCLC symptoms included chest pain, shoulder/arm pain, chest tightness, cough, persistent cough, coughing up phlegm, coughing up blood, hoarseness, general breathlessness, breathlessness triggered by exertion, and wheezing. Systemic SCLC symptoms included pain, dizziness, poor appetite, weight loss, and fatigue (physical tiredness, needing rest, weakness, low energy, and mental tiredness). Physical functioning concepts included symptoms limiting daily activities, reduced walking, inability to get out of bed, bending, squatting, strength, balance, and endurance. Role functioning concepts included stopping or limiting work or hobbies. Treatment-specific adverse events (AEs) were identified but not included in the conceptual model as AEs would vary by treatments.

Conclusions: SCLC patients experience symptoms and physical and role functioning challenges that affect quality of life. Our conceptual model will inform the development of a SCLC-specific PRO instrument.