Emory University School of Medicine, Atlanta, Georgia, USA.
AppHatchery, Georgia Clinical and Translational Science Alliance, Atlanta, Georgia, USA.
Pediatr Blood Cancer. 2023 Oct;70(10):e30537. doi: 10.1002/pbc.30537. Epub 2023 Jul 6.
At least 5%-10% of malignancies occur secondary to an underlying cancer predisposition syndrome (CPS). For these families, cancer surveillance is recommended with the goal of identifying malignancy earlier, in a presumably more curable form. Surveillance protocols, including imaging studies, bloodwork, and procedures, can be complex and differ based on age, gender, and syndrome, which adversely affect adherence. Mobile health (mHealth) applications (apps) have been utilized in oncology and could help to facilitate adherence to cancer surveillance protocols.
Applying a user-centered mobile app design approach, patients with a CPS and/or primary caregivers were interviewed to identify current methods for care management and barriers to compliance with recommended surveillance protocols. Broad themes from these interviews informed the design of the mobile app, HomeTown, which was subsequently evaluated by usability experts. The design was then converted into software code in phases, evaluated by patients and caregivers in an iterative fashion. User population growth and app usage data were assessed.
Common themes identified included general distress surrounding surveillance protocol scheduling and results, difficulty remembering medical history, assembling a care team, and seeking resources for self-education. These themes were translated into specific functional app features, including push reminders, syndrome-specific surveillance recommendations, ability to annotate visits and results, storage of medical histories, and links to reliable educational resources.
Families with CPS demonstrate a desire for mHealth tools to facilitate adherence to cancer surveillance protocols, reduce related distress, relay medical information, and provide educational resources. HomeTown may be a useful tool for engaging this patient population.
至少有 5%-10%的恶性肿瘤是继发于潜在的癌症易患综合征(CPS)。对于这些家庭,建议进行癌症监测,目的是更早地发现恶性肿瘤,以便更有可能治愈。监测方案包括影像学检查、血液检查和操作,因年龄、性别和综合征而异,且较为复杂,这会对患者的依从性产生负面影响。移动医疗(mHealth)应用程序(apps)已在肿瘤学中得到应用,可能有助于促进癌症监测方案的依从性。
应用以用户为中心的移动应用程序设计方法,对患有 CPS 和/或主要照顾者的患者进行访谈,以确定当前的护理管理方法和遵守推荐监测方案的障碍。这些访谈中的广泛主题为移动应用程序 HomeTown 的设计提供了信息,随后由可用性专家对其进行了评估。然后分阶段将设计转换为软件代码,并由患者和照顾者以迭代方式进行评估。评估了用户群体的增长和应用程序的使用数据。
确定的常见主题包括对监测方案安排和结果的普遍困扰、难以记住病史、组建护理团队和寻找自我教育资源的困难。这些主题被转化为特定的应用程序功能,包括推送提醒、针对特定综合征的监测建议、标注就诊和结果的能力、存储病史以及链接到可靠的教育资源。
患有 CPS 的家庭希望使用 mHealth 工具来促进对癌症监测方案的依从性,减轻相关困扰,传递医疗信息并提供教育资源。HomeTown 可能是吸引这一患者群体的有用工具。