Department of Pediatric Pulmonology, Amalia Children's Hospital, Radboud University Medical Center, Nijmegen, Netherlands.
IQ Health Science Department, Radboud University Medical Center, Nijmegen, Netherlands.
J Med Internet Res. 2024 Aug 6;26:e54942. doi: 10.2196/54942.
The current literature inadequately addresses the extent to which remote monitoring should be integrated into care models for chronic respiratory diseases (CRDs).
This study examined a remote monitoring program (RMP) in cystic fibrosis (CF) by exploring experiences, future perspectives, and use behavior over 3 years, with the aim of developing future directions for remote monitoring in CRDs.
This was a mixed methods, multicenter, observational study in 5 Dutch CF centers following a sequential explanatory design. Self-designed questionnaires using the technology acceptance model were sent out to people with CF who had a minimum of 12 months of experience with the RMP and local health care professionals (HCPs). Questionnaire outcomes were used to inform semistructured interviews with HCPs and people with CF. Qualitative findings were reported following the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist. Anonymous data on use frequency of all people with CF were analyzed.
Between the second quarter of 2020 and the end of 2022, a total of 608 people with CF were enrolled in the program, and a total of 9418 lung function tests and 2631 symptom surveys were conducted. In total, 65% (24/37) of HCPs and 89% (72/81) of people with CF responded to the questionnaire, and 7 HCPs and 12 people with CF participated in semistructured interviews. Both people with CF and HCPs were positive about remote monitoring in CF care and found the RMP a good addition to daily care (people with CF: 44/72, 61%; HCPs: 21/24, 88%). Benefits ranged from supporting individual patients to reducing health care consumption. The most valued monitoring tool was home spirometry by both people with CF (66/72, 92%) and HCPs (22/24, 92%). Downsides included the potential to lose sight of patients and negative psychosocial effects, as 17% (12/72) of people with CF experienced some form of stress due to the RMP. A large majority of people with CF (59/72, 82%) and HCPs (22/24, 92%) wanted to keep using the RMP in future, with 79% (19/24) of HCPs and 75% (54/72) of people with CF looking forward to more replacement of in-person care with digital care during periods of well-being. Future perspectives for the RMP were centered on creating hybrid care models, personalizing remote care, and balancing individual benefits with monitoring burden.
Remote monitoring has considerable potential in supporting people with CF and HCPs within the CF care model. We identified 4 practice-based future directions for remote monitoring in CF and CRD care. The strategies, ranging from patient driven to prediction driven, can help clinicians, researchers, and policy makers navigate the rapidly changing digital health field, integrate remote monitoring into local care models, and align remote care with patient and clinician needs.
目前的文献未能充分说明远程监测应该在多大程度上融入慢性呼吸道疾病（CRD）的护理模式中。
本研究通过探讨囊性纤维化（CF）远程监测计划（RMP）的经验、未来展望和使用行为，来探索 RMP 在 CF 中的应用，旨在为 CRD 的远程监测制定未来方向。
这是一项在 5 个荷兰 CF 中心进行的混合方法、多中心、观察性研究，采用序贯解释性设计。使用技术接受模型设计的自定问卷分发给至少有 12 个月 RMP 经验的 CF 患者和当地医疗保健专业人员（HCP）。问卷结果用于告知 HCP 和 CF 患者的半结构式访谈。根据 COREQ（报告定性研究的统一标准）检查表报告定性研究结果。对所有 CF 患者的使用频率进行了匿名数据分析。
在 2020 年第二季度至 2022 年底期间，共有 608 名 CF 患者入组该计划，共进行了 9418 次肺功能测试和 2631 次症状调查。共有 65%（24/37）的 HCP 和 89%（72/81）的 CF 患者回复了问卷，7 名 HCP 和 12 名 CF 患者参加了半结构式访谈。CF 患者和 HCP 对 CF 护理中的远程监测均持积极态度，并认为 RMP 是日常护理的良好补充（CF 患者：44/72，61%；HCP：21/24，88%）。其好处包括支持个体患者和减少医疗保健消耗。最有价值的监测工具是家庭肺功能测定，CF 患者（66/72，92%）和 HCP（22/24，92%）都认为这是最有价值的监测工具。缺点包括有可能失去对患者的关注和产生负面的心理社会影响，因为 17%（12/72）的 CF 患者因 RMP 而感到某种形式的压力。绝大多数 CF 患者（59/72，82%）和 HCP（22/24，92%）希望在未来继续使用 RMP，79%（24/24）的 HCP 和 75%（54/72）的 CF 患者期待在病情稳定期间更多地用数字护理替代面对面护理。RMP 的未来展望集中在创建混合护理模式、远程护理个性化以及平衡个人利益与监测负担上。
远程监测在 CF 护理模式中对 CF 患者和 HCP 具有相当大的潜力。我们确定了远程监测在 CF 和 CRD 护理中的 4 个基于实践的未来方向。这些策略从患者驱动到预测驱动，可以帮助临床医生、研究人员和政策制定者在快速变化的数字健康领域中导航，将远程监测融入当地护理模式，并使远程护理与患者和临床医生的需求保持一致。
