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Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review

Marie Friedel1,2, Isabelle Aujoulat3, Anne-Catherine Dubois3

  • 1Institute of Health and Society, Université Catholique de Louvain, Brussels, Belgium; marie.friedel@uclouvain.be.

Pediatrics
|December 12, 2018
PubMed

Insights

Measuring the impact of pediatric palliative care (PPC) is challenging. Few instruments adequately assess PPC outcomes, and children are rarely involved in reporting their own results.

Area of Science:

  • Palliative Care
  • Pediatric Health
  • Quality of Life Measurement

Background:

  • Pediatric palliative care (PPC) aims to enhance quality of life for children using a family-centered approach.
  • Measuring the multidimensional outcomes of PPC remains a significant challenge in clinical practice and research.

Purpose of the Study:

  • To systematically review and evaluate the measurement instruments used to assess the impact of pediatric palliative care interventions.
  • To identify the range of outcomes and psychometric properties of instruments applied in PPC research.

Main Methods:

  • A comprehensive search was conducted across five major databases: Embase, Scopus, The Cochrane Library, PsychInfo, and Medline.
  • Inclusion criteria focused on studies defining PPC, involving patients aged 0-18 years, life-limiting diseases, empirical data, and combined intervention-outcome-measurement descriptions.
  • Data extraction and quality assessment were performed by two independent researchers using the Standard Quality Assessment Criteria checklist.

Main Results:

  • Nineteen of 2150 reviewed articles met the eligibility criteria, with 15 employing quantitative methods and 9 deemed of moderate quality.
  • Key multidimensional outcomes assessed included quality of life, spiritual well-being, satisfaction, social support, and family involvement.
  • Only 15 of 23 reported instruments demonstrated some psychometric properties, and a mere 5 included child-reported outcome measures.

Conclusions:

  • There is a scarcity of data regarding the psychometric properties of instruments used in pediatric palliative care.
  • Children's perspectives and outcomes are not systematically incorporated into the assessment of PPC interventions.
  • Further development and validation of measurement tools are needed to accurately capture the impact of PPC on children and their families.
Abstract

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