Wali Sahr, Remtulla Tharani Alliya, Balmer-Minnes Diana, Cafazzo Joseph A, Laks Jessica, Jeewa Aamir
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.
Centre for Digital Therapeutics, University Health Network, Toronto, Ontario, Canada.
PLOS Digit Health. 2023 Dec 11;2(12):e0000371. doi: 10.1371/journal.pdig.0000371. eCollection 2023 Dec.
Pediatric heart disease currently effects over one million infants, children, and adolescents in the United States alone. Unlike the adult population, pediatric patients face a more uncertain path with factors relating to their growth and maturation creating levels of complexity to their care management. With mobile phones increasingly being utilized amongst adolescents, digital therapeutics tools could provide a platform to help patients and families manage their condition. This study explored clinicians' views on the use of a digital therapeutic program to support pediatric heart disease management. Using the principles from user-centered design, semi-structured interviews were conducted with 4 cardiologists, 3 nurse practitioners and 1 cardiology fellow at the Hospital for Sick Children. All interview transcripts underwent inductive thematic analysis using Braun and Clarke's iterative six-phase approach. To further contextualize the analytic interpretation of the study findings, Eakin and Gladstone's value-adding approach was used. Five themes were identified: (i) multidisciplinary model of care; (ii) patient care needs change over time; (iii) treatment burden and difficulties in care management; (iv) transition to adulthood; and (v) filling care gaps with digital health. Clinicians valued the opportunity to monitor a patient's health status in real-time, as it allowed them to modify care regimens on a more preventive basis. However, with adolescent care often varying according to the patient's age and disease severity, a digital therapeutic program would only be valuable if it was customizable to the patients changing care journey. Digital therapeutic programs can ease the process of self-care for adolescents with heart disease throughout the growth and maturation of their care journey. However, to ensure the sustained use of a program, there is a need to work collaboratively with patients, caregivers, and clinicians to ensure their lived experiences guide the design and delivery of the overall program.
仅在美国，目前就有超过100万婴儿、儿童和青少年患有儿科心脏病。与成年人群不同，儿科患者面临着更不确定的治疗过程，因为与他们的生长和发育相关的因素给他们的护理管理带来了复杂程度。随着青少年越来越多地使用手机，数字治疗工具可以提供一个平台来帮助患者和家庭管理他们的病情。本研究探讨了临床医生对使用数字治疗方案来支持儿科心脏病管理的看法。利用以用户为中心的设计原则，对 Sick Children医院的4名心脏病专家、3名执业护士和1名心脏病学研究员进行了半结构化访谈。所有访谈记录都采用Braun和Clarke的迭代六阶段方法进行归纳主题分析。为了进一步将研究结果的分析解释置于具体情境中，采用了Eakin和Gladstone的增值方法。确定了五个主题：（i）多学科护理模式；（ii）患者护理需求随时间变化；（iii）治疗负担和护理管理困难；（iv）向成年期过渡；（v）用数字健康填补护理空白。临床医生重视实时监测患者健康状况的机会，因为这使他们能够在更具预防性的基础上调整护理方案。然而，由于青少年护理通常根据患者的年龄和疾病严重程度而有所不同，数字治疗方案只有在能够根据患者不断变化的护理过程进行定制时才具有价值。数字治疗方案可以在患有心脏病的青少年整个护理过程的生长和发育过程中简化自我护理过程。然而，为了确保方案的持续使用，需要与患者、护理人员和临床医生合作，以确保他们的生活经历指导整个方案的设计和实施。
