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Pediatric Palliative Symptom Categories for (e)PROM in Specialized Pediatric Palliative Home Care

Rebekka Hocher1, Nora Ruthke2, Theresa Sophie Busse3

  • 1Juniorprofessorship for Digital Health, Faculty of Health (R.H., T.S.B.), Witten/Herdecke University, Witten, Germany; Palliative Care Team for Children Kassel (R.H., T.V., J.Z., M.D.), Kleine Riesen Nordhessen gGmbH, Kassel, Germany.

Journal of Pain and Symptom Management
|July 16, 2026
PubMed

Insights

A new Pediatric Palliative Symptom Categories (PPSC) tool was developed for assessing symptom burden in pediatric palliative home care (PPHC). This child-specific (e)PROM enhances patient care and research in PPHC.

Area of Science:

  • Pediatric Palliative Care
  • Patient-Reported Outcome Measures
  • Symptom Assessment

Background:

  • Electronic patient-reported outcome measures ((e)PROMs) are crucial for assessing patient health but are underutilized in pediatric palliative home care (PPHC).
  • Existing (e)PROMs are often adapted from adult care and do not fully meet the specific needs of children in PPHC.

Purpose of the Study:

  • To develop a child-specific (e)PROM tool tailored for assessing and monitoring symptom burden in children and young people receiving PPHC.
  • To create a reliable instrument for improving care and research in the PPHC setting.

Main Methods:

  • Utilized the COSMIN Practical Guide, incorporating a questionnaire survey and expert panel with three German PPHC teams.
  • Conducted a systematic literature review following the PRISMA statement to refine the tool.
  • Performed a field test with 63 pediatric patients to evaluate the tool's practical implementation and gather user feedback.

Main Results:

  • Developed the Pediatric Palliative Symptom Categories (PPSC) comprising 37 symptom categories relevant to PPHC.
  • The PPSC demonstrated high consistency with existing instruments but covered a broader range of PPHC-specific symptoms.
  • Field testing confirmed the PPSC's accuracy, identifying necessary adjustments in language and symptom scope based on user input.

Conclusions:

  • Tailored instruments like the PPSC are essential for accurate symptom burden assessment in PPHC, as adult-derived tools are insufficient.
  • The PPSC has the potential to significantly improve patient care and advance research within PPHC.
  • Further research is required for customization, validation, and assessment of the PPSC's long-term effectiveness.
Abstract

Keywords:
Palliative carehome carepatient-reported outcome measurespediatricssymptom assessmentsymptom burden

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