481: Perceived injustice of pain in children and adolescents with cancer: Patient-engaged analysis

Topic: Clinical Science
Subtopic: Pain category (ICD-11), Chronic cancer related pain, Psychology, Pain in special populations (e.g. neonates, children, teens, elderly, neurodegenerative diseases)

Background and Aims: 400000 children are newly diagnosed with cancer each year [1]. Cancer and its treatments brings complex symptoms including pain and fatigue, as well as unwelcome changing in physicality such as weight, skin, and hair changes [2]. These changes are often thought of as ‘unfair’. Perceived injustice, the perception of unfairness has been association with pain and disability in other pediatric pain populations [3], but has not been investigated in oncology patients. We aimed to explore the journey to diagnosis and feelings about diagnosis in children with cancer and their parents, specifically trying to understand how perceived injustice plays a role.

Methods: Interviews are scheduled to take place in March-April 2026. 15 children and 15 caregivers will be interviewed separately using a semi-structured guide. Children will be between 12-18 years of age and will have been diagnosed with cancer within the previous 12 months. Finally, children must have had pain associated with their cancer (4/10 or more on numeric rating scale) within the previous one month to be included. Caregivers will be any primary caregiver willing to take part in the study with their child. Interviews will take around 30-45 minutes and participants will be compensated for their time.

Results: Guided by novel qualitative work carried out in Canadian child and young person pain clinics [4] we will include patients with lived experience (PPIE) as research partners in our data analysis. We will analyze data with them using reflexive thematic analysis (RTA) [5]. We will train our PPIE in the theory and steps of RTA and co-produce learning materials for future research of this type to ensure that is it grounded within the patient experience. They will help us to interpret the interviews to provide a more credible, rigorous interpretation of the data beyond traditional response validation checking methods.

Conclusions: Perceived injustice was developed and mostly explored in adults [6], with fewer studies exploring the concept in pediatric chronic pain populations [7]. This research is the first to explore perceived injustice in children with cancer-related pain using patient-engaged qualitative methodology. It will explore how perceived injustice about cancer and specifically pain related to cancer is experienced on the journey to diagnosis and the 12 months immediately following diagnosis in children and young people. Perceived injustice could be an important mechanism explaining higher disability and distress, and this research is the first step to understanding its role in children with cancer.

References: [1] CureAll framework: WHO Global Initiative for Childhood Cancer [Internet]. www.who.int. 2021. Available from: https://www.who.int/publications/i/item/9789240025271
[2] Van Cleve L, Muñoz CE, Savedra M, Riggs M, Bossert E, Grant M, et al. Symptoms in Children With Advanced Cancer. Cancer Nursing. 2012 Mar;35(2):115–25.
[3] Miller MM, Scott EricL, Trost Z, Hirsh AT. Perceived Injustice Is Associated With Pain and Functional Outcomes in Children and Adolescents With Chronic Pain: A Preliminary Examination. The Journal of Pain. 2016 Nov;17(11):1217–26.
[4] Boerner KE, Fox DA, Du L, Metzger DL, Marshall S, Moore EM, et al. Experiences of Gender-Diverse Youth Living With Chronic Pain. PEDIATRICS [Internet]. 2025 Jan 15 [cited 2025 Mar 6];155(2).
[5] Braun V, Clarke V. Reflecting on Reflexive Thematic Analysis. Qualitative Research in Sport, Exercise and Health. 2019;11(4):589–97.
[6] Carriere JS, Donayre Pimentel S, Yakobov E, Edwards RR. A Systematic Review of the Association Between Perceived Injustice and Pain-Related Outcomes in Individuals with Musculoskeletal Pain. Pain Medicine (Malden, Mass) [Internet]. 2020 Nov 7;21(7):1449–63.
[7] Alpdogan NY, Miller MM, Benallal L, Royer MP, Carrière JS. Perceived injustice and pain-related outcomes in children with pain conditions: A systematic review. Pain medicine (Malden, Mass) [Internet]. 2024 Jan;25(10):637–46.

Presenting Author: Victoria Collard
Submitting Author: Victoria Collard

Senior Author: Emma Fisher

IASP 2026 Global Year theme of Neuropathic Pain: No

• Laura Baker: DClinPsy - University Hospitals Bristol and Weston NHS Foundation Trust
• Rachel Cox: MRCPCH - University Hospitals Bristol and Weston NHS Foundation Trust
• Cara Davis: DClinPsy - University of Bath
• Rachel Dommett: MRCPCH, PhD - University Hospitals Bristol and Weston NHS Foundation Trust
• Megan Miller: PhD - Cincinnati Children's Hospital
• Emma Fisher: PhD - University of Bath