Department of Preventive Medicine, Keck School of Medicine of the University of Southern California, Los Angeles, California, USA; Department of Dermatology, Keck School of Medicine of the University of Southern California, Los Angeles, California, USA.
Institute for Nursing and Interprofessional Research, Children's Hospital Los Angeles, Los Angeles, California, USA.
J Pain Symptom Manage. 2021 Sep;62(3):619-636.e6. doi: 10.1016/j.jpainsymman.2020.12.004. Epub 2020 Dec 19.
There is potential value to home-based palliative care for children with serious illness delivered via telemedicine (TM HBPC). Evidence to guide optimal design and delivery of TM HBPC is urgently needed.
To explore the existing literature to identify research on pediatric TM HBPC.
Systematic scoping review conducted following preferred reporting items for systematic reviews and meta-analysis for scoping reviews guidelines. PubMed, Embase, Cochrane CENTRAL, CINAHL, Web of Science, PsycINFO, and ERIC were searched (January-April 2020) using keywords and controlled vocabulary. The Reach, Effectiveness, Adoption, Implementation, Maintenance framework was used to identify components in the literature that facilitate or limit dissemination of TM HBPC interventions.
Seventeen articles were included. Most of the literature comprised small descriptive studies, such as case reports, and feasibility trials. Many studies focused on acceptability, and the TM HBPC model was generally acceptable to both clinicians and families. Few studies measured patient access to care, patient, and family centered health or quality of life outcomes. While included studies addressed multiple criteria for each of the Reach, Effectiveness, Adoption, Implementation, Maintenance dimensions, much of the information was qualitative and subjective.
TM HBPC is a promising strategy to increase access to palliative care for children with serious illness. However, the current review found a need for more robust information describing implementation and effectiveness of TM HBPC models, adaptation across care settings, and maintenance over time to guide and facilitate broader dissemination.
通过远程医疗（TM HBPC）为重病儿童提供家庭为基础的姑息治疗具有潜在价值。急需有证据指导 TM HBPC 的最佳设计和实施。
探索现有的文献，以确定儿科 TM HBPC 的研究。
采用系统综述和荟萃分析的首选报告项目进行系统范围的审查。使用关键词和受控词汇，在 2020 年 1 月至 4 月期间，在 PubMed、Embase、Cochrane 中心、CINAHL、Web of Science、PsycINFO 和 ERIC 上进行了搜索。采用 Reach、Effectiveness、Adoption、Implementation、Maintenance 框架来确定文献中促进或限制 TM HBPC 干预措施传播的组成部分。
共纳入 17 篇文章。文献大部分为小型描述性研究，如病例报告和可行性试验。许多研究侧重于可接受性，TM HBPC 模式通常得到临床医生和家庭的认可。很少有研究测量患者获得护理的情况、以患者和家庭为中心的健康或生活质量结果。虽然纳入的研究针对每个 Reach、Effectiveness、Adoption、Implementation、Maintenance 维度的多个标准，但许多信息都是定性和主观的。
TM HBPC 是增加重病儿童获得姑息治疗机会的一种有前途的策略。然而，目前的综述发现，需要更多关于 TM HBPC 模型的实施和有效性、在不同护理环境中的适应性以及随着时间的推移的维持的更有力信息，以指导和促进更广泛的传播。
