How can telehealth be used to enhance the quality of care in home-based pediatric palliative care: protocol for a systematic literature review

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Abstract

Pediatric palliative care (PPC) is a specialized medical approach aimed at improving quality of life of children with life-limiting and life-threatening conditions. It addresses the needs of both the child and family, and preferably starts immediately after a palliative diagnosis with access to specialized care, effective symptom management, and psychosocial, spiritual and emotional support. Unfortunately, receiving PPC is often challenging due to the varied and complex nature of conditions and the difficulties in reaching all patients who require care. Telehealth offers a promising solution by enabling virtual access to interdisciplinary teams, facilitating real-time consultations, extending care into the home, educating professionals across regions, and fostering consistent, collaborative, patient- and family-centered PPC. As this requires a seamless integration into the daily routines of all relevant stakeholders, telehealth may raise complexity in terms of privacy, data protection and regulatory compliance. Nevertheless, studies indicate that parents and patients are open to using telehealth applications. Evidence on the quality of care provided through digital health interventions in PPC remains limited. Therefore, the aim of this study is to investigate how telehealth can enhance the quality of care in home-based PPC settings, not only for patients, but also for families and healthcare professionals. Findings from our review will contribute to a deeper understanding of how patients and families can receive timely and equitable palliative care regardless of their location, ultimately informing future models of digital health interventions in PPC.

Methods and analysis

We will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guideline and perform a systematic search across Medline ALL, Embase, Web of Science Core Collection, Cochrane Central Register of Controlled Trials, and Google Scholar. Results will be displayed by the PRISMA flow diagram, visually summarizing the screening process. We will consider peer-reviewed studies without language, time or geographic restrictions and manage extracted data using Covidence. The search will be conducted by an information specialist and data synthesis will be documented via a data extraction table. Two reviewers will screen and extract data independently, with a third reviewer resolving discrepancies. We will present a narrative synthesis, using clear language, defining key terms, and following open-access standards to ensure accessibility for non-expert audiences.

Ethics and dissemination

No primary or clinical data will be collected. The review findings will be shared via peer-reviewed journal publications, conferences, and stakeholder meetings, and video presentations.

PROSPERO registration number

CRD420251035350

STRENGTHS AND LIMITATIONS OF THIS STUDY

  • We will identify and highlight important new developments that may enhance the current understanding of the potential role of telehealth interventions in PPC.

  • We will explore how quality of care and respective metrics are described in the context of home-based PPC.

  • We will investigate the functionalities and features deployed in telehealth solutions.

  • We will identify barriers and facilitators to adopt a home-based telehealth model for PPC.

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