使用经验取样法问卷调查晚期癌症患者的日常经历:开发、内容验证和优化研究。

IF 3.3 Q2 ONCOLOGY
JMIR Cancer Pub Date : 2024-11-05 DOI:10.2196/57510
Joran Geeraerts, Lara Pivodic, Lise Rosquin, Eline Naert, Geert Crombez, Mark De Ridder, Lieve Van den Block
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引用次数: 0

摘要

背景:经验取样法(ESM)是一种自我报告法,通常每天进行多次评估,可以详细了解癌症患者的日常经验,从而为肿瘤治疗提供参考。在晚期癌症患者中使用体验取样法的情况很有限,而且还没有专门针对肿瘤学开发出经过验证的体验取样法问卷:本研究旨在开发、验证和优化数字化的晚期癌症患者体验取样法(ESM-AC)问卷,涵盖多维领域和背景因素:方法:根据基于共识的健康测量工具选择标准(COSMIN)和欧洲癌症研究与治疗组织指南,设计了一项三轮混合方法研究。研究对 43 名 IV 期乳腺癌或 III 至 IV 期肺癌患者和 8 名医护人员进行了半结构式访谈。第 1 轮评估了基于现有调查问卷开发的一套初步的 ESM 项目的适当性、相对重要性、相关性和全面性。第二轮测试了无害环境管理项目的可理解性。第 3 轮测试了使用 m-Path 应用程序的数字 ESM-AC 问卷的可用性。分析包括描述性统计和定性内容分析:第一轮测试后,我们开发了一套包含 68 个项目的初始核心项目(用于所有患者)和一套补充项目(可选;患者可选择项目),两者都涵盖了生理、心理、社会、精神-存在和总体幸福感领域以及同时发生体验的情境。我们将每天多次评估的项目归类为瞬间项目(例如,"此时此刻,我感到疲倦"),每天早上评估一次的项目归类为早上项目(例如,"昨晚,我睡得很好"),每天晚上评估一次的项目归类为晚上项目(例如,"今天,我感到充满希望")。我们利用参与者的评价来优化问卷项目、数字应用程序及其入门手册。最终,ESM-AC 问卷由包含 31 个瞬间项目、2 个早晨项目和 7 个傍晚项目的数字核心问卷和包含 39 个项目的补充问卷组成。参与者普遍认为数字问卷 "易于使用",在从1("完全不同意")到5("完全同意")的评分中,平均得分为4.5(标准差为0.5):我们为晚期乳腺癌或肺癌患者开发了ESM-AC问卷,这是一份经过内容验证的数字问卷。它在智能手机设备上使用时显示出良好的可用性。未来的研究应评估该ESM工具的潜力,以揭示晚期乳腺癌或肺癌患者的日常经历,探索其临床实用性,并将其验证扩展到其他晚期疾病人群。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Uncovering the Daily Experiences of People Living With Advanced Cancer Using an Experience Sampling Method Questionnaire: Development, Content Validation, and Optimization Study.

Background: The experience sampling method (ESM), a self-report method that typically uses multiple assessments per day, can provide detailed knowledge of the daily experiences of people with cancer, potentially informing oncological care. The use of the ESM among people with advanced cancer is limited, and no validated ESM questionnaires have been developed specifically for oncology.

Objective: This study aims to develop, content validate, and optimize the digital Experience Sampling Method for People Living With Advanced Cancer (ESM-AC) questionnaire, covering multidimensional domains and contextual factors.

Methods: A 3-round mixed methods study was designed in accordance with the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) and the European Organization for Research and Treatment of Cancer guidelines. The study included semistructured interviews with 43 people with stage IV breast cancer or stage III to IV lung cancer and 8 health care professionals. Round 1 assessed the appropriateness, relative importance, relevance, and comprehensiveness of an initial set of ESM items that were developed based on the existing questionnaires. Round 2 tested the comprehensibility of ESM items. Round 3 tested the usability of the digital ESM-AC questionnaire using the m-Path app. Analyses included descriptive statistics and qualitative content analysis.

Results: Following the first round, we developed an initial core set of 68 items (to be used with all patients) and a supplementary set (optional; patients select items), both covering physical, psychological, social, spiritual-existential, and global well-being domains and concurrent contexts in which experiences occur. We categorized items to be assessed multiple times per day as momentary items (eg, "At this moment, I feel tired"), once a day in the morning as morning items (eg, "Last night, I slept well"), or once a day in the evening as evening items (eg, "Today, I felt hopeful"). We used participants' evaluations to optimize the questionnaire items, the digital app, and its onboarding manual. This resulted in the ESM-AC questionnaire, which comprised a digital core questionnaire containing 31 momentary items, 2 morning items, and 7 evening items and a supplementary set containing 39 items. Participants largely rated the digital questionnaire as "easy to use," with an average score of 4.5 (SD 0.5) on a scale from 1 ("completely disagree") to 5 ("completely agree").

Conclusions: We developed the ESM-AC questionnaire, a content-validated digital questionnaire for people with advanced breast or lung cancer. It showed good usability when administered on smartphone devices. Future research should evaluate the potential of this ESM tool to uncover daily experiences of people with advanced breast or lung cancer, explore its clinical utility, and extend its validation to other populations with advanced diseases.

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来源期刊
JMIR Cancer
JMIR Cancer ONCOLOGY-
CiteScore
4.10
自引率
0.00%
发文量
64
审稿时长
12 weeks
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