Jibb Lindsay A, Liu William, Stinson Jennifer N, Nathan Paul C, Chartrand Julie, Alberts Nicole M, Hashemi Elham, Masama Tatenda, Pease Hannah G, Torres Lessley B, Cortes Haydee G, Kuczynski Susan, Liu Sam, La Henry, Fortier Michelle A
University of Toronto Toronto Ontario Canada.
Hospital for Sick Children Toronto Ontario Canada.
Paediatr Neonatal Pain. 2023 Feb 9;6(3):80-88. doi: 10.1002/pne2.12097. eCollection 2024 Sep.
Young children receiving outpatient cancer care are vulnerable to undermanaged pain. App-based solutions that provide pain treatment advice to parents in real-time and in all environments may improve access to quality pain care. We used a parent co-design approach involving iterative rounds of user testing and software modification to develop a usable Pain Caregiver Resource (PainCaRe) real-time pediatric cancer pain management app. Parents of children (2-11 years) with cancer completed three standardized modules using a PainCaRe prototype. App usability and acceptability were evaluated using the validated System Usability Scale and a thematic analysis of app testing sessions and interviews. Iterative testing sessions were conducted until data saturation. Interview themes were synthesized into action items that guided revisions to PainCaRe and additional testing rounds were conducted as necessary. Twenty-two parents participated in three testing cycles. Overall, parents described PainCaRe as an acceptable and potentially clinically useful pain management tool. Mean system usability scores were in the acceptable scale range during each testing cycle. Usability issues identified and resolved included those related to software malfunction, complicated app navigation logic, lack of clarity on pain assessment questions, and the need for pain management advice specifically tailored to child developmental stage. Using co-design methods, the PainCaRe cancer pain management app was successfully refined for its acceptability and utility to parents. Next steps will include a PainCaRe pilot study before evaluating the impact of the app on younger children's pain outcomes in a randomized controlled trial.
接受门诊癌症护理的幼儿容易出现疼痛管理不足的情况。基于应用程序的解决方案能够在所有环境中实时为家长提供疼痛治疗建议，这可能会改善优质疼痛护理的可及性。我们采用了家长共同设计的方法，包括多轮迭代的用户测试和软件修改，以开发一款可用的疼痛护理者资源（PainCaRe）实时儿科癌症疼痛管理应用程序。患有癌症的2至11岁儿童的家长使用PainCaRe原型完成了三个标准化模块。使用经过验证的系统可用性量表以及对应用程序测试环节和访谈的主题分析来评估应用程序的可用性和可接受性。进行迭代测试环节，直到数据饱和。访谈主题被综合成行动项目，指导对PainCaRe进行修订，并在必要时进行额外的测试轮次。22位家长参与了三个测试周期。总体而言，家长们将PainCaRe描述为一种可接受且可能具有临床实用价值的疼痛管理工具。在每个测试周期中，系统可用性平均得分都处于可接受的量表范围内。识别并解决的可用性问题包括与软件故障、复杂的应用程序导航逻辑、疼痛评估问题不清晰以及需要针对儿童发育阶段专门定制的疼痛管理建议等相关的问题。通过共同设计方法，PainCaRe癌症疼痛管理应用程序在家长的可接受性和实用性方面得到了成功优化。下一步将包括进行PainCaRe试点研究，然后在随机对照试验中评估该应用程序对年幼儿童疼痛结果的影响。
