Department of Internal Medicine V, University of Munich, Comprehensive Pneumology Center Munich, DZL-CPC, Ziemssenstraße 1, 80336 Munich, Germany.
Redmond Consulting, Via Civra 17, Montagnola CH-6926, Switzerland.
Lung Cancer. 2022 Jun;168:59-66. doi: 10.1016/j.lungcan.2022.04.008. Epub 2022 Apr 22.
To understand European non-small cell lung cancer (NSCLC) patients' perceptions of disease burden, treatment, and future expectations of treatment and care.
A 32-item online survey was conducted on a sample of NSCLC patients across Europe. Descriptive statistics were used to analyse the data. Results were presented by disease stage (I-III vs. IV).
NSCLC patients (N = 292) from 10 countries responded. Most patients resided in France, Spain, Italy, Germany and UK, with 16 patients from five other countries. Patients' knowledge of biomarker testing was limited (23% of 376 responses indicated no knowledge). Patients reported fear (stage I-III: 40%, stage IV: 27%), anxiety (stage I-III: 44%, stage IV: 33%) and depression (stage I-III: 24%, stage IV: 20%), but also hope (stage I-III: 57%, stage IV: 59%). Professional status was majorly impacted for 43% of stage I-III patients and 58% stage IV patients. Household finances were impacted for ∼70% of all patients. Oral treatment was preferred (60%), and respondents understood dosing schedules (stage I-III: 82%, stage IV: 97%) remembering to take medications (stage I-III: 82%, stage IV: 87%). Most respondents were willing to take more pills, but some indicated that this would be difficult.
Approximately half of the patients in this survey were aware of clinical trial options, but most lacked information about their molecular tumor profile, making it difficult for patients to engage in discussions about their care. The results also suggest that NSCLC patients have significant information and support needs, especially in the areas of emotional and financial burden. Action is needed to address these burdens associated with NSCLC. Furthermore, patients should be provided with the information needed to actively participate in treatment decisions.
了解欧洲非小细胞肺癌（NSCLC）患者对疾病负担、治疗以及对未来治疗和护理的期望的认知。
在欧洲范围内对 NSCLC 患者进行了一项 32 项的在线调查。采用描述性统计方法对数据进行分析。结果按疾病阶段（I-III 期与 IV 期）呈现。
来自 10 个国家的 292 名 NSCLC 患者对调查做出了回应。大多数患者居住在法国、西班牙、意大利、德国和英国，还有 16 名患者来自其他五个国家。患者对生物标志物检测的认知有限（376 次回应中有 23%的人表示一无所知）。患者报告存在恐惧（I-III 期：40%，IV 期：27%）、焦虑（I-III 期：44%，IV 期：33%）和抑郁（I-III 期：24%，IV 期：20%），但也怀有希望（I-III 期：57%，IV 期：59%）。43%的 I-III 期患者和 58%的 IV 期患者的职业状态受到重大影响。约 70%的所有患者的家庭财务受到影响。他们更倾向于接受口服治疗（60%），并能理解剂量方案（I-III 期：82%，IV 期：97%），记得按时服药（I-III 期：82%，IV 期：87%）。大多数受访者愿意服用更多的药物，但也有一些人表示这将很困难。
在这项调查中，大约一半的患者了解临床试验的选择，但大多数人缺乏有关其分子肿瘤特征的信息，这使得患者难以参与关于其护理的讨论。结果还表明，NSCLC 患者存在重大的信息和支持需求，特别是在情感和经济负担方面。需要采取行动来解决与 NSCLC 相关的负担。此外，应向患者提供参与治疗决策所需的信息。
