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开发一种用于与癌症患儿及其照料者一起进行自我/代理症状跟踪的电子系统:一个协同设计范例。

Development of an electronic system for self/proxy symptom tracking alongside children with cancer and their caregivers: a co-design exemplar.

作者信息

Crane Stacey, Ganci Aaron, Robb Sheri L, Gibbs Karen DiValerio, Nosich Rebecca, Miller Andrew D

机构信息

Cizik School of Nursing, University of Texas Health Science Center at Houston, Houston, TX, USA.

Herron School of Art and Design, Indiana University, Indianapolis, IN, USA.

出版信息

Support Care Cancer. 2025 Aug 26;33(9):810. doi: 10.1007/s00520-025-09865-0.


DOI:10.1007/s00520-025-09865-0
PMID:40859061
Abstract

PURPOSE: Symptom tracking systems are essential for identifying symptoms in patients, prompting timely clinical intervention to reduce suffering and improve outcomes for children with cancer. Electronic patient-reported outcome tools have been designed to assess the presence and severity of symptoms and notify clinicians of the patient's condition, facilitating quick and effective symptom management. Utilizing co-design methods allows end user input in the tool development process. This manuscript describes how we used a co-design process to develop an electronic system for tracking the symptoms of children with cancer and their caregivers. METHODS: Collaborative co-design sessions were conducted using a Future Workshop format. Participants were six children with cancer and seven caregivers. Co-design activities were used to gather insights into current symptom reporting practices and to envision an ideal system. Data from these sessions were analyzed using Braun and Clark's method for descriptive thematic analysis. RESULTS: Key themes identified during data analysis included the importance of relationships and interactions with the health care team, miscommunication in symptom reporting, and the need for centralized information storage and timely clinician response. Children in particular indicated challenges with finding the words to share how they are feeling, while caregivers expressed constant worry and the burden of advocating on their child's behalf. CONCLUSIONS: Co-design is a powerful method for envisioning solutions to clinical problems. By involving end users in key stages of the creative process, it is possible to develop solutions that better address underlying challenges and are more enticing for users to adopt. In this study, we successfully used co-design to identify key features for an electronic system intended to improve symptom tracking, facilitate communication with clinicians, and allow for better symptom management. Barriers to consistent electronic system use were also identified, emphasizing the need for simplicity in system design, an engaging interface, and a clear benefit for users.

摘要

目的:症状跟踪系统对于识别患者症状、促使及时进行临床干预以减轻痛苦并改善癌症患儿的治疗结果至关重要。电子患者报告结局工具旨在评估症状的存在和严重程度,并将患者的病情告知临床医生,以促进快速有效的症状管理。采用共同设计方法可让最终用户参与工具开发过程。本文描述了我们如何使用共同设计过程来开发一个用于跟踪癌症患儿及其护理人员症状的电子系统。 方法:使用未来研讨会的形式进行协作式共同设计会议。参与者包括六名癌症患儿和七名护理人员。共同设计活动用于深入了解当前的症状报告做法,并设想一个理想的系统。使用布劳恩和克拉克的描述性主题分析方法对这些会议的数据进行了分析。 结果:数据分析过程中确定的关键主题包括与医疗团队关系和互动的重要性、症状报告中的沟通不畅,以及集中信息存储和临床医生及时响应的必要性。特别是儿童表示在表达自身感受时难以找到合适的词汇,而护理人员则表达了持续的担忧以及代表孩子进行沟通的负担。 结论:共同设计是构想临床问题解决方案的有力方法。通过让最终用户参与创作过程的关键阶段,有可能开发出能更好地应对潜在挑战且更吸引用户采用的解决方案。在本研究中,我们成功地使用共同设计来确定电子系统的关键特征,该系统旨在改善症状跟踪、促进与临床医生的沟通,并实现更好的症状管理。还确定了持续使用电子系统的障碍,强调了系统设计要简单、界面要吸引人以及对用户要有明显益处的必要性。

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本文引用的文献

[1]
Usability and User Experience Testing of a Co-Designed Electronic Patient-Reported Outcomes App ("MyPal for Adults") for Palliative Cancer Care: Mixed Methods Study.

JMIR Hum Factors. 2025-4-24

[2]
Co-design of an electronic patient-reported outcome symptom monitoring system for immunotherapy toxicities.

Support Care Cancer. 2024-12-2

[3]
Using Implementation Science Frameworks to Guide the Use of Electronic Patient-Reported Outcome Symptom Monitoring in Routine Cancer Care.

JCO Oncol Pract. 2024-3

[4]
Parent and clinician perceptions and recommendations on a pediatric cancer pain management app: A qualitative co-design study.

PLOS Digit Health. 2023-11-29

[5]
Design Features Associated With Engagement in Mobile Health Physical Activity Interventions Among Youth: Systematic Review of Qualitative and Quantitative Studies.

JMIR Mhealth Uhealth. 2023-3-6

[6]
Psychometric validation and testing of the 10-item pediatric daily chest-related electronic patient reported outcome (ePRO) diary.

J Patient Rep Outcomes. 2023-1-25

[7]
Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review.

J Med Internet Res. 2022-11-22

[8]
A multisite randomized controlled trial of an early palliative care intervention in children with advanced cancer: The PediQUEST Response Study Protocol.

PLoS One. 2022

[9]
Use of Daily Patient-Reported Outcome Measurements in Pediatric Cancer Care.

JAMA Netw Open. 2022-7-1

[10]
Barriers to Electronic Patient-Reported Outcome Measurement Among Patients with Cancer and Limited English Proficiency.

JAMA Netw Open. 2022-7-1

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