OBJECTIVES: CSCC is the second most common type of skin cancer after basal cell carcinoma, accounting for 20% of nonmelanoma skin cancers. Early and aggressive surgical excision is the primary method of managing patients with localized CSCC with clinical or pathologic high-risk features. This study explored the experience of patients with non-metastatic CSCC and their treatment.

METHODS: 22 patients with a clinician-confirmed diagnosis of CSCC were interviewed using a semi-structured guide. Patients had an Eastern Cooperative Oncology Group performance status of 0 or 1, no concurrent cancers in the past 5 years, and no metastases. Interviews were recorded, transcribed verbatim, and coded using line-by-line inductive coding. A literature-based conceptual model (visualization of elicited themes categorized based on their conceptual underpinning and reflecting the patient experience) was updated based on interviews with 3 physician experts in CSCC and patient interviews.

RESULTS: The themes of the conceptual model were: lesion symptoms, overall appearance, appearance distress, functional impacts (lesion specific), cancer worry, impact on sleep (stress, discomfort), psychological impact, sun behavior, overall experience of care, and negative treatment effects (including appearance and symptoms). For patients who reported dissatisfaction with treatment, themes were (not mutually exclusive) scarring, nervousness beforehand, amount of time in waiting room, long healing time, application of topical cream, hearing excision while awake, and lesion recurrence; these are potential drivers of negative treatment experiences.

CONCLUSIONS: Findings indicate that non-metastatic CSCC patients experience a variety of lesion symptoms, appearance distress, and some impacts including lesion-specific functional limitations, psychological impacts, and sleep impacts. Some patients also reported negative treatment experience leading to overall dissatisfaction, particularly with surgery, which warrants further exploration. Interventions should address patients’ needs and experience in these important areas.