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

(Electronic) patient-reported outcome measures ((e)PROMs) enable the systematic assessment of patients' health status and treatment needs. However, their targeted use in pediatric palliative home care (PPHC) remains limited, as existing instruments are largely derived from adult care and have not adequately addressed the needs of this specific field.

This study aims to develop a child-specific (e)PROM tool to assess and monitor symptom burden in children and young people receiving PPHC.

Following the COSMIN Practical Guide for Measurement in Medicine, we first gathered the experiences of n = 3 German PPHC teams using a questionnaire survey and expert panel. Secondly, a systematic literature review was conducted based on the PRISMA statement to refine the tool. A field test involving n = 63 patients was subsequently carried out to evaluate the practical implementation of the tool.

The expert panel established 37 symptom categories, which formed the Pediatric Palliative Symptom Categories (PPSC). The comparison with instruments from the literature review showed high consistency, yet the PPSC covers a wider range of symptoms specifically relevant for PPHC. The field test confirmed the accuracy of the PPSC but also revealed some necessary adjustments regarding the language and scope of the symptoms based on user responses.

Providing tailored instruments is essential for precisely and effectively assessing symptom burden in PPHC, as transferring instruments from adult care has proven insufficient. The PPSC offers the potential to enhance patient care and research in PPHC. Further research is needed to customize, validate, and determine the long-term effectiveness of the tool.