Howell Doris, Bryant Lukosius Denise, Avery Jonathan, Santaguida Athina, Powis Melanie, Papadakos Tina, Addario Vincenzo, Lovas Mike, Kukreti Vishal, Haase Kristen, Mayo Samantha J, Papadakos Janet, Moradian Saeed, Krzyzanowska Monika K
Department of Supportive Care, Princess Margaret Cancer Research Institute, Toronto, ON, Canada.
School of Nursing, McMaster University, Hamilton, ON, Canada.
JMIR Cancer. 2023 Jul 21;9:e44914. doi: 10.2196/44914.
Patients with cancer require adequate preparation in self-management of treatment toxicities to reduce morbidity that can be achieved through well-designed digital technologies that are developed in co-design with patients and end users.
We undertook a user-centered co-design process in partnership with patients and other knowledge end users to develop and iteratively test an evidence-based and theoretically informed web-based cancer self-management program (I-Can Manage). The specific study aims addressed in 2 phases were to (1) identify from the perspective of patients with cancer and clinicians the desired content, features, and functionalities for an online self-management education and support (SMES) program to enable patient self-management of treatment toxicities (phase 1); (2) develop the SMES prototype based on human-centered, health literate design principles and co-design processes; and (3) evaluate usability of the I-Can Manage prototype through user-centered testing (phase 2).
We developed the I-Can Manage program using multiperspective data sources and based on humanistic and co-design principles with end users engaged through 5 phases of development. We recruited adult patients with lung, colorectal, and lymphoma cancer receiving systemic treatments from ambulatory clinics in 2 regional cancer programs for the qualitative inquiry phase. The design of the program was informed by data from qualitative interviews and focus groups, persona and journey mapping, theoretical underpinnings of social cognitive learning theory, and formalized usability testing using a cognitive think-aloud process and user satisfaction survey. A co-design team comprising key stakeholders (human design experts, patients/caregiver, clinicians, knowledge end users, and e-learning and digital design experts) was involved in the developmental process. We used a cognitive think-aloud process to test usability and participants completed the Post-Study System Usability Questionnaire (PSSUQ).
In the initial qualitative inquiry phase, 16 patients participated in interviews and 19 clinicians participated in interviews or focus groups and 12 key stakeholders participated in a persona journey mapping workshop to inform development of the program prototype. The I-Can Manage program integrates evidence-based information and strategies for the self-management of treatment toxicities and health-promoting behaviors in 6 e-learning modules (lay termed "chapters"), starting with an orientation to self-management. Behavioral exercises, patient written and video stories, downloadable learning resources, and online completion of goals and action plans were integrated across chapters. Patient participants (n=5) with different cancers, gender, and age worked through the program in the human factors laboratory using a cognitive think-aloud process and all key stakeholders reviewed each chapter of the program and approved revisions. Results of the PSSUQ (mean total score: 3.75) completed following the cognitive think-aloud process (n=5) suggest patient satisfaction with the usability of I-Can Manage.
The I-Can Manage program has the potential for activating patients in self-management of cancer and treatment toxicities but requires testing in a larger randomized controlled trial.
癌症患者在治疗毒性的自我管理方面需要充分准备,以降低发病率,这可以通过与患者和最终用户共同设计开发的精心设计的数字技术来实现。
我们与患者和其他知识最终用户合作,开展了以用户为中心的共同设计过程,以开发并迭代测试一个基于证据且理论依据充分的基于网络的癌症自我管理项目(“我能管理”)。分两个阶段进行的具体研究目标是:(1)从癌症患者和临床医生的角度确定在线自我管理教育与支持(SMES)项目的期望内容、功能和特性,以实现患者对治疗毒性的自我管理(第一阶段);(2)基于以人为本、具备健康素养的设计原则和共同设计过程开发SMES原型;(3)通过以用户为中心的测试评估“我能管理”原型的可用性(第二阶段)。
我们使用多视角数据源,基于人文和共同设计原则开发“我能管理”项目,在5个开发阶段让最终用户参与其中。我们从2个区域癌症项目的门诊招募接受全身治疗的成年肺癌、结直肠癌和淋巴瘤患者,用于定性探究阶段。该项目的设计依据定性访谈和焦点小组的数据、人物角色与旅程映射、社会认知学习理论的理论基础,以及使用认知出声思维过程和用户满意度调查进行的正式可用性测试。一个由关键利益相关者(人类设计专家、患者/护理人员、临床医生、知识最终用户以及电子学习和数字设计专家)组成的共同设计团队参与了开发过程。我们使用认知出声思维过程测试可用性,参与者完成了研究后系统可用性问卷(PSSUQ)。
在初始定性探究阶段,16名患者参与了访谈,19名临床医生参与了访谈或焦点小组,12名关键利益相关者参与了人物角色旅程映射研讨会,为项目原型的开发提供信息。“我能管理”项目在6个电子学习模块(通俗称为“章节”)中整合了基于证据的信息和治疗毒性自我管理及健康促进行为的策略,开篇是自我管理介绍。各章节都融入了行为练习、患者书面和视频故事、可下载学习资源以及目标和行动计划的在线完成。患有不同癌症、不同性别和年龄的5名患者参与者在人因实验室通过认知出声思维过程使用该项目,所有关键利益相关者审查了项目的每一章并批准了修订。在认知出声思维过程后(n = 5)完成的PSSUQ结果(平均总分:3.75)表明患者对“我能管理”的可用性感到满意。
“我能管理”项目有潜力促使患者对癌症及治疗毒性进行自我管理,但需要在更大规模的随机对照试验中进行测试。