Center for Health Research - Kaiser Permanente Northwest, 3800 N. Interstate Ave, Portland, OR, 97227, USA.
School of Medicine, University of North Carolina, Chapel Hill, NC, USA.
Support Care Cancer. 2018 Dec;26(12):4067-4076. doi: 10.1007/s00520-018-4276-0. Epub 2018 Jun 6.
Complex bladder and colorectal cancer surgeries are associated with significant patient morbidity, yet few resources exist to prepare patients for the high levels of distress and complications they may experience. After ethnographic research to identify design challenges, we held a user-centered design (UCD) workshop to begin to develop patient- and caregiver-centered interventions to support preparation for and recovery after complex cancer surgery.
Concepts that emerged from brainstorming sessions were visually represented on storyboards and rated. Highly scored concepts were further developed in break-out prototyping sessions and then presented to the entire group for review in person and during subsequent webinars. We collected workshop products (worksheets, prototypes, and recordings) for analysis to identify opportunities for intervention. The workshop, held in late 2014, was attended by three colorectal/oncologic surgeons, three urologic surgeons, five ostomy nurses, one quality improvement leader, three patients, one caregiver, and three experienced UCD facilitators.
Three opportunity areas were identified: (1) enhanced patient education including tele-health and multi-media tools (available at hospitals/clinics or online in any setting), (2) personalized discharge assessment and care planning, and (3) integrated symptom monitoring and educational interventions. Stakeholders reached consensus that enhanced patient education was the most important direction for subsequent intervention development.
We engaged diverse stakeholders in a participatory, UCD process and concluded that research and practice improvement should prioritize the development of educational interventions in the pre-operative period to set the groundwork for improving appropriate self-care during recovery from major colorectal and bladder cancer surgeries.
复杂的膀胱和结直肠癌症手术会导致患者出现严重的发病率，但很少有资源可以帮助患者准备好应对可能经历的高度痛苦和并发症。在进行人种学研究以确定设计挑战之后，我们举办了一次以用户为中心的设计（UCD）研讨会，以开始开发以患者和护理人员为中心的干预措施，以支持复杂癌症手术后的准备和康复。
头脑风暴会议中出现的概念通过故事板进行了直观呈现，并进行了评分。得分较高的概念在分组原型设计会议中得到进一步开发，然后在整个小组中进行演示，以进行现场和随后的网络研讨会审查。我们收集了研讨会产品（工作表、原型和录音）进行分析，以确定干预的机会。该研讨会于 2014 年末举行，参加者包括三位结直肠/肿瘤外科医生、三位泌尿科医生、五位造口护士、一位质量改进负责人、三位患者、一位护理人员和三位经验丰富的 UCD 促进者。
确定了三个机会领域：（1）增强患者教育，包括远程医疗和多媒体工具（可在医院/诊所使用，或在任何环境的在线使用），（2）个性化出院评估和护理计划，以及（3）综合症状监测和教育干预。利益相关者达成共识，增强患者教育是后续干预措施发展的最重要方向。
我们让不同的利益相关者参与了参与式 UCD 流程，并得出结论，研究和实践改进应优先考虑在术前阶段开发教育干预措施，为改善主要结直肠和膀胱癌手术后的适当自我护理奠定基础。
