Children with Cancer (under 8 years old)

Care for childhood cancer(s) has greatly improved over the last decades exceeding 85% 5-year survival in countries with optimal health-care resources (1-4). Although treatment regimens are optimized to reduce unpleasant side effects, many paediatric cancer patients still experience significantly decreased physical, mental, emotional, and social health due to their disease and its treatment (5-6).

Thus, the assessment of health-related quality of life (HRQOL) is a critical outcome measure for anti-cancer treatment in children. Research has indicated that children as young as 5 years old can reliably and validly self-report if age-appropriate instruments are being used (7-9). However, questionnaires have to be age-specific and developed in accordance with the child’s developmental stage (10).

While several questionnaires have been developed to assess the health-related quality of life (HRQoL) in children with cancer, recent research has highlighted several issues in terms of content validity and questionnaire development (11-12).  In a systematic review focusing on self-reporting from children younger than 8 years in particular, Tomlinson and colleagues raised concerns about the internal consistency, reliability, and validity of PRO measures for this age-group (13). Based on the above-mentioned literature, we argue that age-appropriate EORTC QLG tools are required to assess the HRQOL of children with cancer aged below 8 years. For children below 5 years, we propose an ObsRO-version only, while for children 5 to <8 years, a PRO and ObsRO version should be available.

The current study is designed to capture the HRQoL issues relevant and important to children with cancer. This study will also provide an evaluation of optimal response formats for children aged 5-8 years and from this will offer recommendations to the EORTC Quality of Life group (QLG) on a suitable HRQoL assessment approach for this age group.

The current study is designed to capture the HRQoL issues relevant and important to children with cancer. This study will also provide an evaluation of optimal response formats for children aged 5-8 years to inform recommendations to the EORTC Quality of Life group (QLG) on a suitable HRQoL assessment approach for this age group.

1. International incidence of childhood cancer, 2001-10: a population-based registry study. Lancet Oncol. 2017;18(6):719-31.
2. Gatta G, Botta L, Rossi S, Aareleid T, Bielska-Lasota M, Clavel J, et al. Childhood cancer survival in Europe 1999-2007: results of EUROCARE-5–a population-based study. Lancet Oncol. 2014;15(1):35-47.
3. Siegel DA, King J, Tai E, Buchanan N, Ajani UA, Li J. Cancer incidence rates and trends among children and adolescents in the United States, 2001-2009. Pediatrics. 2014;134(4):e945-55.
4. Smith MA, Altekruse SF, Adamson PC, Reaman GH, Seibel NL. Declining childhood and adolescent cancer mortality. Cancer. 2014;120(16):2497-506.
5. Ruland, C.M., Hamilton, G. A., & Schjødt-Osmo, B. (2009). The complexity of symptoms and problems experienced in children with cancer: A review of the literature. Journal of Pain and Symptom Management, 37(3), 403–418. https://doi.org/10.1016/j.jpainsymman.2008.03.009
6. Kestler, S.A.,& LoBiondo-Wood,G. (2012). Review of symptom experiences in children and adolescents with cancer. Cancer Nursing, 35(2), E31–E49. https://doi.org/10.1097/NCC.0b013e3182207a2a.
7. Riley AW. Evidence that school-age children can self-report on their health. Ambulatory pediatrics : the official journal of the Ambulatory Pediatric Association. 2004;4(4 Suppl):371-6.
8. Varni JW, Limbers CA, Burwinkle TM. How young can children reliably and validly self-report their health-related quality of life?: an analysis of 8,591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:1.
9. Arbuckle R, Abetz-Webb L. “Not just little adults”: qualitative methods to support the development of pediatric patient-reported outcomes. Patient. 2013;6(3):143-59.
10. Matza, L. S., Patrick, D. L., Riley, A.W., Alexander, J. J., Rajmil, L., Pleil, A.M., & Bullinger,M. (2013). Pediatric patient-reported outcome instruments for research to support medical product labeling: Report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value in health, 16(4), 461–479. https://doi.org/10.1016/j.jval.2013.04.004
11. Anthony SJ, Selkirk E, Sung L, Klaassen RJ, Dix D and Klassen AF. Quality of life of pediatric oncology patients: Do patient-reported outcome instruments measure what matters to patients? Qual Life Res 2017;26:273-281.
12. Pinheiro LC, McFatrich M, Lucas N, Walker JS, Withycombe JS, Hinds PS, et al. Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review. Qual Life Res 2018;27:291-319.
13. Tomlinson D, Tigelaar L, Hyslop S, Lazor T, Dupuis LL, Griener K, et al. Self-report of symptoms in children with cancer younger than 8 years of age: a systematic review. Support Care Cancer. 2017;25(8):2663-70.

We have already completed a systematic literature and identified relevant Health Related Quality of Life (HRQoL) issues for children below 8 years. We are now conducting the interviews with children, parents and HCPs to identify the most relevant HRQoL issues for children with cancer below 8 years. The first interviews in our collaborating centres in different countries and languages have already been completed. For the interviews with this age group, we developed a memory card game to playfully evaluate the psychosocial issues.

Current status:

Phase 1. We are conducting the interviews with children, parents and HCPs to identify the most relevant HRQoL issues for children with cancer below 8 years.

• We expect to publish the results of the systematic review by 2026
• We expect to be finished with recruitment in all collaborating centres by June 2026
• We expect to start Phase 2 by September 2026

For further information about the study or to express an interest in collaboration, please contact:

Chiara Vetrano: chiara.vetrano@i-med.ac.at

David Riedl: david.riedl@i-med.ac.at

Samantha Sodergren: S.C.Sodergren@soton.ac.uk

Treatment for children with cancer has improved greatly over the last decades. Thus, it is important to find out how these effective treatments affect the children’s physical and mental well-being too. A good way to find this out is to use questionnaires. Although several questionnaires have been specifically developed for children with cancer, some researchers are unsure if they include all important aspects. For this study, we will look at existing questionnaires and studies to find out if they include all aspects that are important to children with cancer. Additionally, we will talk with children with cancer, their parents and their doctors to find out if there is anything we might not have covered so far.