个性化医学中心分子肿瘤委员会基于应用程序的患者报告结果评估--(TRACE)

IF 2.4 Q2 CLINICAL NEUROLOGY
L. Dörner, L. Grosse, F. Stange, H. Hille, S. Kurz, H. Becker, Sebastian Volkmer, M. Hippler, D. Rieger, Paula Bombach, J. Rieger, Lina Weinert, Laura Svensson, Carolin Anders, Sila Cekin, F. Paulsen, Ö. Öner, K. Ruhm, Holly Sundberg Malek, Y. Möller, M. Tatagiba, M. Wallwiener, Nils Eckert, P. Escher, Nico Pfeifer, A. Forschner, A. Bauer, Daniel Zips, M. Bitzer, N. Malek, Cihan Gani, G. Tabatabai, M. Renovanz
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引用次数: 0

摘要

基于生物标志物的疗法越来越多地用于临床试验之外的癌症患者。为了在基于生物标记物的疗法中考虑患者的观点,有必要对患者报告的结果(PRO)进行系统评估。我们评估了通过智能手机应用程序进行电子患者报告结果评估的可行性。 一个跨学科专家小组根据对 292 名神经肿瘤患者进行的回顾性分析中报告的症状负担和健康相关生活质量 (HRQoL) 指标开发了一款智能手机应用程序。该应用程序包括对健康相关生活质量(HRQoL)、症状负担和心理压力的有效评估。试点研究对其可行性和可用性进行了测试。我们对患者和医护人员(HCP)进行了半结构式访谈,并根据 Mayring 定性内容分析法进行了转录和分析。此外,我们还评估了电子病历的依从性和描述性数据。 共有 14 名患者(9 名女性,5 名男性)参加了调查。我们就可用性/可行性对 4 名保健人员、9 名患者和 1 名护理人员进行了访谈。其主要优点是可以在家完成问卷调查,并且在日常生活中使用方便。依从性很高,例如,每周分发的 NCCN 痛苦温度计问卷有 82% 得到了按时回答,但个体间存在差异。根据 EORTC QLQ-C30 工具,我们观察到痛苦评分的中位数为 5(范围 0-10,197 项结果,n=12,每周评估),总体健康评分的中位数为 58.3(范围 16.7-100,77 项结果,n=12,每月评估)。 这项试点研究证明了该应用程序的可行性和可接受性。因此,我们将在生物标志物指导疗法期间扩大其应用范围,以实现系统的 PRO 评估。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
App-based assessment of patient-reported outcomes in the Molecular Tumor Board in the Center for Personalized Medicine - (TRACE)
Biomarker-based therapies are increasingly used in cancer patients outside clinical trials. Systematic assessment of patient-reported outcomes (PRO) is warranted to take patients’ perspective during biomarker-based therapies into consideration. We assessed feasibility of an electronic PRO assessment via a smartphone application. An interdisciplinary expert panel developed a smartphone application based on symptom burden and health-related quality of life (HRQoL) metrics reported in a retrospective analysis in 292 neuro-oncological patients. The app included validated assessments of health-related quality of life (HRQoL), burden of symptoms and psychological stress. Feasibility and usability were tested in a pilot study. Semi-structured interviews with patients and health care professionals (HCP) were conducted, transcribed and analyzed according to Mayring´s qualitative content analysis. Furthermore, we assessed compliance and descriptive data of ePROs. A total of 14 patients have been enrolled, (9 female, 5 male). A total of 4 HCPs, 9 patients and one caregiver were interviewed regarding usability/feasibility. Main advantages were the possibility to complete questionnaires at home and comfortable implementation in daily life. Compliance was high, e.g., 82% of the weekly distributed NCCN Distress Thermometer questionnaires were answered on time, however, with interindividual variability We observed a median distress score of 5 (range 0-10, 197 results, n=12, weekly assessed) and a median Global health score of 58.3 according to the EORTC QLQ-C30 instrument (range 16.7-100, 77 results, n=12, monthly assessed). This pilot study proved feasibility and acceptance of the app. We will therefore expand its application during biomarker-guided therapies to enable systematic PRO assessments.
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来源期刊
Neuro-oncology practice
Neuro-oncology practice CLINICAL NEUROLOGY-
CiteScore
5.30
自引率
11.10%
发文量
92
期刊介绍: Neuro-Oncology Practice focuses on the clinical aspects of the subspecialty for practicing clinicians and healthcare specialists from a variety of disciplines including physicians, nurses, physical/occupational therapists, neuropsychologists, and palliative care specialists, who have focused their careers on clinical patient care and who want to apply the latest treatment advances to their practice. These include: Applying new trial results to improve standards of patient care Translating scientific advances such as tumor molecular profiling and advanced imaging into clinical treatment decision making and personalized brain tumor therapies Raising awareness of basic, translational and clinical research in areas of symptom management, survivorship, neurocognitive function, end of life issues and caregiving
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