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Updated: Jan 11, 2026

Qualitative and Quantitative Validation of Tools with Rating Scales Aimed at Assessing the Quality of University Service-Learning
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The Pediatric Cancer Care Experience (PACE) Questionnaire: Development and Validation of a Novel Instrument

Sona N Kocinsky1, Meghan E Lindsay2, Sophia De Oliveira1

  • 1Department of Pediatrics (S.N.K., S.D.O., P.A.), Yale School of Medicine, New Haven, Connecticut, USA.

Journal of Pain and Symptom Management
|November 13, 2025
PubMed

Insights

A new parent-reported questionnaire, the Pediatric Cancer Care Experience (PACE), has been developed to assess care quality for children with advanced cancer. This validated tool will aid in future research and quality improvement initiatives.

Area of Science:

  • Pediatric Oncology
  • Health Services Research
  • Patient-Reported Outcomes

Background:

  • Patient-reported outcome measures are vital for assessing healthcare quality.
  • A significant need exists for validated family-reported tools in pediatric advanced cancer care.

Purpose of the Study:

  • To develop, refine, and validate a novel parent-reported instrument for evaluating the quality of care in children with advanced cancer.

Main Methods:

  • The "Pediatric Cancer Care Experience" (PACE) questionnaire was developed and refined through expert review and parent interviews.
  • A multicenter, cross-sectional pilot study involving 158 parents/guardians of children with advanced cancer was conducted.
  • Psychometric properties, including exploratory factor analysis (EFA), internal consistency, and construct validity, were evaluated.

Main Results:

  • The PACE questionnaire demonstrated strong face and content validity.
  • EFA identified a three-factor model: therapeutic alliance, collaborative care, and prognostic communication/shared decision-making.
  • Sufficient internal consistency (Cronbach's α: 0.8-0.9) and construct validity were achieved.

Conclusions:

  • The PACE questionnaire is a rigorously developed, parent-reported instrument for assessing care quality and experience in pediatric advanced cancer.
  • Systematic use of PACE can support future research and quality improvement in pediatric oncology care delivery.
Abstract

Keywords:
Patient-reported experience measureadvanced cancerexploratory factor analysispediatricpsychometricsreliabilityvalidation

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