How Are You Feeling Today? – Gaps and Opportunities in Capturing Patient Reported Outcomes (PROs) in Pediatric Cancer Care

The paper was originally published in the EJC Paediatric Oncology on December 1, 2025.

Children and young people with cancer often experience many physical and emotional challenges during and after treatment, but their voices are not always heard in medical care. This article explores how Patient-Reported Outcomes (PROs) can help make paediatric cancer care more child-centered and responsive to their real needs.

Why PROs matter

PROs are any report on the status of a patient’s health condition that comes directly from the patient without the interpretation of the patient’s response by a clinician or anyone else. Research shows that even young children can describe their symptoms and feelings when asked in the right way. Using Patient-Reported Outcome Measures (PROMs), which are questionnaires or tools designed to capture these experiences, helps healthcare professionals better understand how treatments affect children’s daily lives, not just their medical results. This can improve communication, guide treatment decisions, and enhance quality of life of young cancer patients and survivors.

Current challenges

Despite their benefits, PROMs are not yet used consistently in children’s cancer care. Many existing tools were designed for adults, may be too complex for children, or not relevant to their specific situation. Especially, younger children, those with cognitive impairments, and long-term survivors are often left out. Hospitals may also lack time, training, or resources to integrate PROMs into routine practice, and some healthcare professionals remain uncertain about their usefulness.

Moving forward

A few key opportunities for improvement are highlighted in this article, for example:

  1. Involve patients and families in developing PROMs so the questions reflect what really matters to them.
  2. Use PROMs (and their outcomes) in everyday care, not just in research, so children can see that their feedback influences their treatment.
  3. Include every patient and survivor, even very young children or those with disabilities, by adapting tools and combining child and caregiver input.
  4. Continue using PROMs after treatment ends, as survivors often face lasting physical and mental health issues that go unnoticed without regular follow-up care.

Conclusion

By making PROMs more inclusive, age-appropriate, and routinely used, healthcare professionals can better understand each child’s experience and the outcoming PROs can help improve both treatment and survivorship care. The article calls for closer collaboration among healthcare professionals, researchers, and patient advocates to ensure that every child’s voice truly counts in paediatric cancer care.