# Understanding Pain and Quality of Life in Paediatric Cancer Survivors: A Systematic Review with a Focus on Early Survivorship

## TL;DR

This study highlights that children and young people who survive cancer often experience pain and related issues, but these are under-recognized due to a lack of suitable tools and early data.

## Contribution

The study identifies a gap in understanding post-treatment pain in young cancer survivors due to limited early data and inadequate assessment tools.

## Key findings

- CYP cancer survivors report higher pain prevalence than the general population, especially females.
- Fatigue, depression, and anxiety are common comorbidities linked to pain in this group.
- Current research lacks validated tools and early post-treatment data on pain in CYP survivors.

## Abstract

What is already known on this topic?
Children and young people (CYP) who survive cancer—particularly females—are more likely than the general population to report acute and chronic pain in later life, and they frequently experience comorbidities such as fatigue, depression, and anxiety. Yet, their pain is often likely to be under-recognized, especially in childhood, partly due to a lack of developmentally sensitive assessment tools in CYP.

Children and young people (CYP) who survive cancer—particularly females—are more likely than the general population to report acute and chronic pain in later life, and they frequently experience comorbidities such as fatigue, depression, and anxiety. Yet, their pain is often likely to be under-recognized, especially in childhood, partly due to a lack of developmentally sensitive assessment tools in CYP.

What this study adds?
This study demonstrates that the poor understanding of post-cancer treatment pain in children and young people (CYP) stems not only from the absence of adapted assessment tools but also from limited early post-treatment data. Together, these shortcomings create a significant gap in mapping CYP pain trajectories after cancer.

This study demonstrates that the poor understanding of post-cancer treatment pain in children and young people (CYP) stems not only from the absence of adapted assessment tools but also from limited early post-treatment data. Together, these shortcomings create a significant gap in mapping CYP pain trajectories after cancer.

How might this study affect research, practice or policy?
Our findings highlight the urgent need for timely, rigorous, age-specific research to better inform survivorship care and shape evidence-based clinical policy. Our study also suggests that clinicians should routinely assess both acute and chronic pain in CYP cancer survivors using validated, age-appropriate tools in early post-treatment completion assessments.

Our findings highlight the urgent need for timely, rigorous, age-specific research to better inform survivorship care and shape evidence-based clinical policy. Our study also suggests that clinicians should routinely assess both acute and chronic pain in CYP cancer survivors using validated, age-appropriate tools in early post-treatment completion assessments.

Background: Pain is a common but often under-recognized clinical feature among children and young people (CYP) cancer survivors. This systematic review aimed to examine the prevalence of acute and chronic pain in 5–24-year-old cancer survivors, explore associated biopsychosocial comorbidities and evaluate the psychometric properties of pain assessment tools used with this population. Methods: This review provides a conceptual replication to a review published in 2020 by Schulte et al. by updating and purposefully narrowing the review population to CYP (5–24 y) to better capture their pain experience. We updated the search from Schulte et al., extending the search period up to October 2024 across 5 databases. Results: Our independent search identified 18 studies, with only 1 new paper published since Schulte et al., 2020. Overall, CYP cancer survivors reported a higher prevalence of pain than the general population, with females experiencing higher levels than males, consistent with broader chronic pain literature. Fatigue, depression, and anxiety were common comorbidities, and pain substantially impacted quality of life. Key limitations included the use of unvalidated questionnaires; inconsistent definitions of chronic pain and lack of patient stratification based on diagnoses, age and treatment protocol. Moreover, data were aggregated, and we were unable to extract information from early survivorship. Conclusions: There is a critical need for more rigorous research on pain in CYP cancer survivors. Specifically, gathering data on pain experienced during the immediate post-treatment completion phase of cancer care, an area currently underrepresented in the literature, will provide valuable insights into patients’ pain trajectories.