Community-based pediatric palliative care: a systematic review of structures, processes, and outcomes

TL;DR

This paper reviews how community-based palliative care for children and families works and what outcomes it achieves.

Contribution

It systematically analyzes structures, processes, and outcomes of community-based pediatric palliative care models.

Findings

Multidisciplinary teams and home visits are common in community-based palliative care.

Outcomes include reduced hospital use and improved quality of life for children and caregivers.

Validated outcome measures and policy support are needed to improve care.

Abstract

To analyze the structure, processes, and outcomes of different models of community-based palliative care of children, adolescents, and their families reported in the literature.

The authors conducted a systematic review of original, full-text studies in MEDLINE and Embase (January 2014–May 2024), following PRISMA. Two reviewers screened/extracted data; a third resolved disagreements. Study quality and reporting were appraised with the Newcastle–Ottawa Scale and, as applicable, STROBE, COREQ, and CARE. Narrative synthesis was organized with Donabedian’s framework. PROSPERO: CRD42018747214.

Twenty-six high-quality studies (5 qualitative, 18 quantitative, 3 mixed-methods) described community PPC across home-based services, outpatient programs, community health and social support centers. Common structures included multidisciplinary teams with 24/7 availability, assistive devices/equipment, telemedicine, and screening/assessment tools (e.g., PedsQL, PedsQL-FIM, PIP, PaPaS). Core processes were home visits, caregiver education, symptom monitoring (including digital tools), advance care planning, interprofessional teamwork, and coordination with schools and social services. Reported outcomes most frequently included reduced hospital admissions and emergency use, improved symptom control and health-related quality of life, higher caregiver satisfaction, and lower parenting stress; however, measures and follow-up were heterogeneous.

Community-based PPC can improve children’s and families’ quality of life when medical, psychosocial, and social resources are integrated beyond the hospital. To advance the field, validated outcome measures, sustainable financing, workforce training, and stronger policy frameworks are urgently needed.

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