Barriers and Facilitators to Shared Decision-Making in EGFRm Non-Small Cell Lung Cancer: Patient Perspectives.

INTRODUCTION: The Global Lung Cancer Coalition Patient Charter highlights that every patient should have involvement in decision-making. In lung cancer, patient involvement in treatment decision-making is often perceived as difficult to achieve. PURPOSE: This study explored the experiences of patients with epidermal growth factor receptor mutated (EGFRm) non-small cell lung cancer (NSCLC) to identify the barriers and facilitators to their involvement in decision-making. PATIENTS AND METHODS: An online Bulletin Board where participants answered quantitative and qualitative questions, interacting with an online moderator, was used to capture the experiences of 28 self-selected adult patients with EGFRm NSCLC recruited through a patient organisation. RESULTS: 56% (15/27) of patients felt involved in their treatment decisions; they received sufficient information from their doctor and were able to ask the questions they needed. Information most important in supporting treatment decision involvement was: treatment effectiveness; impact on prognosis; mechanism of action; impact of treatment on daily life; treatment administration; possible side effects and their management. 37% (10/27) of patients did not feel involved in their treatment decisions. Half (5/10) were not asked about their treatment preferences. Patients who did not feel involved reported a lack of understanding about EGFR, confusion over medical terms that led to misunderstandings, and no personalisation of treatment information. 43% (12/28) of patients reported that their doctors used visual aids (CT scans, hand drawing/annotating diagrams and charts). When used, these enhanced patients' understanding and involvement. Most patients (96%, 27/28) wanted to understand treatment effectiveness; progression free survival, overall survival, overall response rate but struggled to understand the medical terminology. CONCLUSION: These findings from a small, self-selected group of patients highlight the importance of clear information, personalised and tailored to individual patients, in enabling patients with EGFRm NSCLC to be involved in their treatment decisions. Validation in a broader patient population would be valuable.