End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussel, Belgium
End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussel, Belgium.
BMJ Open. 2024 Feb 14;14(2):e075752. doi: 10.1136/bmjopen-2023-075752.
People with advanced cancer can experience a wide range of multidimensional symptoms or concerns, but little is known about when and how these fluctuate in daily life. Experience sampling methods (ESMs) involve repeated self-reports in people's natural contexts aimed at uncovering everyday life experiences. ESM has limited recall bias and good ecological validity but might be burdensome to patients. This study aims to pretest and evaluate the feasibility and clinical utility of a validated ESM and use it to explore everyday experiences of people living with advanced breast or lung cancer.
In step 1, we will optimise our ESM method by pretesting it through usability interviews and a pilot ESM study. In step 2, we will evaluate and use the ESM method through an observational ESM study to investigate the daily experiences of people with advanced breast or lung cancer. Step 2 also includes interviews with healthcare professionals to determine the clinical utility of ESM in oncology. Participants will complete a digital questionnaire ten times per day, measuring momentary experiences in the physical, psychological, social, spiritual-existential domains and context. Multilevel regression models will analyse fluctuations and temporal relations among measured experiences and context. Analyses also include evaluation of compliance and participation rates. We will apply content analysis to the usability interviews and follow-up interviews of the pilot ESM study.
We obtained approval from the ethics committees of the University Hospitals of Brussels (BUN: 1432023000043) and Ghent (ONZ-2023-0136). Results will be published in open-access, peer-reviewed journals and presented at conferences. If ESM appears feasible in this population, it could offer new insights into the daily experiences and help optimise support for people with advanced cancer.
晚期癌症患者可能会经历广泛的多维症状或问题，但人们对这些症状或问题在日常生活中何时以及如何波动知之甚少。体验抽样方法（ESM）涉及在人们的自然环境中对其进行重复的自我报告，旨在揭示日常生活体验。ESM 具有有限的回忆偏差和良好的生态有效性，但可能会给患者带来负担。本研究旨在预先测试和评估一种经过验证的 ESM 的可行性和临床实用性，并使用它来探索晚期乳腺癌或肺癌患者的日常体验。
在步骤 1 中，我们将通过可用性访谈和试点 ESM 研究对我们的 ESM 方法进行优化。在步骤 2 中，我们将通过观察性 ESM 研究评估和使用 ESM 方法，以调查晚期乳腺癌或肺癌患者的日常体验。步骤 2 还包括对医疗保健专业人员的访谈，以确定 ESM 在肿瘤学中的临床实用性。参与者将每天完成十次数字问卷调查，测量身体、心理、社会、精神-存在领域和环境的即时体验。多层次回归模型将分析所测量的体验和环境之间的波动和时间关系。分析还包括对依从性和参与率的评估。我们将对可用性访谈和试点 ESM 研究的后续访谈进行内容分析。
我们已获得布鲁塞尔大学医院（BUN：1432023000043）和根特大学医院（ONZ-2023-0136）伦理委员会的批准。结果将发表在开放获取、同行评议的期刊上，并在会议上展示。如果 ESM 在该人群中可行，它可以为日常生活体验提供新的见解，并有助于优化对晚期癌症患者的支持。
