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<p>Paediatric palliative care (PPC) in oncology plays a crucial role in enhancing the quality of life for children with cancer and their families. However, outcome measurement in this context remains fragmented, with tools often lacking validation, paediatric specificity, or contextual relevance, especially in low- and middle-income countries (LMICs). This scoping review maps the outcome measurement tools used in paediatric oncology palliative care, examining their assessed domains, psychometric properties and cultural, linguistic and health-system contextual relevance, particularly in LMICs. We systematically searched six databases from 2006 to 2025 and identified 27 eligible studies reporting on 28 unique tools across six key domains: symptom burden, quality of life, psychological well-being, spiritual health, caregiver burden and end-of-life care. While tools like Paediatric Quality of Life Inventory (PedsQL) and Symptom Screening in Pediatrics Tool (SSPedi) showed strong psychometric performance, only a few had been adapted for LMIC contexts. The psychological and spiritual domains were underrepresented, and most tools relied on proxy reporting, which limited child-centred assessments. The findings suggest the need for validated, culturally sensitive and inclusive tools co-developed with children and caregivers. Establishing such outcome measures is essential to ensuring equitable, high-quality palliative care across diverse settings. This review lays the groundwork for developing tools and advancing policies that support comprehensive and compassionate care for children with cancer. Review registration: The review is registered on Open Science Framework (OSF) <a href="https://doi.org/10.17605/OSF.IO/G8BN3">https://doi.org/10.17605/OSF.IO/G8BN3</a>.</p>

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Outcome measurement tools in pediatric oncology palliative care: a scoping review of domains, validation and contextual relevance

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年6月16日

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  • Vani Verma,
  • Arun Ghoshal,
  • Mebin Mathew,
  • Harshitha D,
  • Aishwarya Sanian,
  • Krithika S. Rao,
  • Vasudeva Bhat K,
  • Naveen Salins

摘要

Paediatric palliative care (PPC) in oncology plays a crucial role in enhancing the quality of life for children with cancer and their families. However, outcome measurement in this context remains fragmented, with tools often lacking validation, paediatric specificity, or contextual relevance, especially in low- and middle-income countries (LMICs). This scoping review maps the outcome measurement tools used in paediatric oncology palliative care, examining their assessed domains, psychometric properties and cultural, linguistic and health-system contextual relevance, particularly in LMICs. We systematically searched six databases from 2006 to 2025 and identified 27 eligible studies reporting on 28 unique tools across six key domains: symptom burden, quality of life, psychological well-being, spiritual health, caregiver burden and end-of-life care. While tools like Paediatric Quality of Life Inventory (PedsQL) and Symptom Screening in Pediatrics Tool (SSPedi) showed strong psychometric performance, only a few had been adapted for LMIC contexts. The psychological and spiritual domains were underrepresented, and most tools relied on proxy reporting, which limited child-centred assessments. The findings suggest the need for validated, culturally sensitive and inclusive tools co-developed with children and caregivers. Establishing such outcome measures is essential to ensuring equitable, high-quality palliative care across diverse settings. This review lays the groundwork for developing tools and advancing policies that support comprehensive and compassionate care for children with cancer. Review registration: The review is registered on Open Science Framework (OSF) https://doi.org/10.17605/OSF.IO/G8BN3.