Rutland Sarah B, Bergquist Rikard Palmer, Hager Andreas, Geurs Robin, Mims Cathy, Gutierrez Hector H, Oates Gabriela R
Pediatric Pulmonary and Sleep Medicine, The University of Alabama at Birmingham, Birmingham, AL, United States.
Motivo Management LLC, Reno, NV, United States.
JMIR Form Res. 2021 Jan 26;5(1):e19413. doi: 10.2196/19413.
Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision making.
The aim of this study is to adapt a mobile health (mHealth) app originally developed in Sweden to the needs of patients, families, and health care providers in a CF center in the United States and to test it as a platform for sharing patient-generated health data with the CF health care team.
Focus groups with health care providers of patients with CF, adolescents with CF, and caregivers of children with CF were conducted to determine what modifications were necessary. Focus group data were analyzed using a thematic analysis, and emergent themes were ranked according to desirability and technical feasibility. The mHealth platform was then modified to meet the identified needs and preferences, and the flow of patient-generated health data to a secure Research Electronic Data Capture database was tested. Protocols for data management and clinical follow-up were also developed.
A total of 5 focus groups with 21 participants were conducted. Recommended modifications pertained to all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the health care team; language and presentation; sharing and privacy; and settings and accounts. Overall, health care providers recommended changes to align the mHealth platform with US standards of care, people with CF and their caregivers requested more tracking functionalities, and both groups suggested the inclusion of a mental health tracker as well as more detailed response options and precise language. Beta testers of the modified platform reported issues related to translatability to US environment and various bugs.
This study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered to meet both end users' needs and evidence-based practice recommendations.
囊性纤维化（CF）是一种遗传性慢性疾病，需要每日进行广泛护理，并每季度与多学科护理团队进行门诊随访。除每季度门诊随访外，信息交流有限，这阻碍了最佳疾病自我管理、患者参与及共同决策。
本研究旨在使最初在瑞典开发的一款移动健康（mHealth）应用程序适应美国一家CF中心患者、家庭及医疗服务提供者的需求，并将其作为一个与CF医疗团队共享患者生成的健康数据的平台进行测试。
对CF患者的医疗服务提供者、CF青少年患者及CF儿童的照护者进行焦点小组访谈，以确定所需的修改内容。使用主题分析法对焦点小组数据进行分析，并根据可取性和技术可行性对新出现的主题进行排序。然后对mHealth平台进行修改，以满足已确定的需求和偏好，并测试患者生成的健康数据流向安全的研究电子数据采集数据库的情况。还制定了数据管理和临床随访方案。
共进行了5个焦点小组访谈，有21名参与者。建议的修改涉及mHealth平台的所有功能，包括症状、治疗及日常护理活动的跟踪；创建和整理药物清单并设置提醒；为医疗团队生成报告；语言和展示；共享和隐私；设置和账户。总体而言，医疗服务提供者建议进行修改，使mHealth平台符合美国护理标准，CF患者及其照护者要求增加更多跟踪功能，两组均建议纳入心理健康跟踪器以及更详细的回复选项和精确语言。修改后平台的测试者报告了与美国环境可翻译性及各种漏洞相关的问题。
本研究表明，在采用现有的mHealth解决方案之前，确定目标用户和利益相关者的需求及偏好非常重要。应充分考虑所有相关观点，包括临床医生、患者和照护者的观点，以满足最终用户的需求和循证实践建议。
