Patient and caregiver insights into lung cancer treatment decision-making: an exploratory focus group

We describe discussions about the lung cancer treatment decision-making process across the patient journey from the perspective of patients and caregivers with diverse experiences of living with lung cancer.
Patient preference studies show individuals with lung cancer usually favor more aggressive treatments despite adverse events (AEs), in pursuit of better survival. However, patients are frequently passive in treatment decisions, suggesting there are barriers impairing patients’ abilities to engage in shared decision-making. To explore this further, we asked patients with epidermal growth factor receptor-positive lung cancer and their caregivers to complete surveys and participate in focus group discussions facilitated by research specialists.
US patients with lung cancer (n = 11) and caregivers (n = 4) took part in exploratory focus groups. While initial treatment decisions were mostly led by healthcare providers, participants became more engaged in their treatment over time. As in other studies, participants prioritized survival over AEs when selecting treatments and shared fears of being switched to less efficacious treatments or reduced dose if they disclosed AEs. Participants emphasized the importance of shared decision-making, early discussions about AEs, and access to patient advocates.
Healthcare providers should distribute reliable educational materials and have early conversations with patients on individual lung cancer treatment, health-related quality of life goals, potential AEs, and distinguishing AEs from disease progression symptoms.

本研究从拥有多样肺癌患病经历的患者与照护者的视角，阐述了贯穿患者就医全流程的肺癌治疗决策相关讨论。
患者偏好相关研究显示，肺癌患者通常会倾向于选择更具侵袭性的治疗方案，即便会伴随不良事件（adverse events, AEs），以期获得更长的生存时长。然而，多数患者在治疗决策中常处于被动地位，这表明存在诸多障碍，削弱了患者参与共同决策（shared decision-making）的能力。
为进一步探究这一现象，我们邀请表皮生长因子受体阳性肺癌（epidermal growth factor receptor-positive lung cancer）患者及其照护者填写问卷，并参与由研究专员主持的焦点小组讨论。
本研究招募11名美国肺癌患者（n=11）与4名照护者（n=4）参与探索性焦点小组讨论。尽管初始治疗决策多由医疗服务人员主导，但随着时间推移，参与者对自身治疗的参与度逐渐提升。与其他研究结果一致，参与者在选择治疗方案时仍将生存时长置于不良事件之上，且普遍担忧若告知医护人员自身出现的不良事件，会被更换为疗效更弱的治疗方案或接受剂量缩减治疗。参与者着重强调了共同决策（shared decision-making）、提前讨论不良事件，以及获取患者倡导者（patient advocates）支持的重要性。
医疗服务人员应向患者分发可靠的科普教育材料，并尽早与患者就个体化肺癌治疗方案、与健康相关的生活质量目标、潜在不良事件，以及区分不良事件与疾病进展症状等内容展开沟通。