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Quality of life priorities of childhood acute lymphoblastic leukemia survivors enrolled in EORTC studies, and a comparison of instruments
Musoro,Jammbe Sleurs,Charlotte Rowsell,Ali Suciu,Stefan Kicinski,Michal Chantziara,Sofia Coens,Corneel Pe,Madeline Missotten,Pierre Vandecruys,Els
Musoro,Jammbe
Sleurs,Charlotte
Rowsell,Ali
Suciu,Stefan
Kicinski,Michal
Chantziara,Sofia
Coens,Corneel
Pe,Madeline
Missotten,Pierre
Vandecruys,Els
Abstract
Purpose Survivors of childhood cancer can suffer from long-term sequelae or decline in quality of life (QoL), for which careful and standardized selection of outcome measures become more important. This study aims to assess different QoL-related outcomes using three distinct questionnaires in an international study, identify the priorities of childhood ALL survivors via the administered questionnaires, and investigate potential interrelationships among QoL domains across the questionnaires. Methods Childhood ALL survivors treated according to the EORTC CLG treatment protocols 58741, 58831/2, and 58881 were recruited in Belgium and France and answered self-report QoL questionnaires, including the Short-Form Health Survey 12 (SF12), the Quality-of-Life Systemic Inventory (QLSI), and the Impact of Cancer for Childhood Cancer Survivors (IOC-CS). To explore which scales overlapped or were novel, Pearson correlations were used to explore associations. In addition, based on the QLSI, we checked whether each of the top priorities of childhood ALL survivors were covered by the SF12 or IOC-CS, by mapping their scales quantitatively and qualitatively. Results QoL data for 186 survivors were provided. Priority areas, as assessed by the QLSI, were vitality, physical abilities, memory, overall physical health, sleep, interaction with friends, love life. Love life was an important source of happiness (for 42%), and for some reported as the domain they were unhappiest in (13%). Quantitative mapping shows moderate correlations between the SF12 scales and IOC-CS scales: life challenges, body and health, thinking and memory, and socializing. Qualitative mapping highlighted additional important domains, specifically family, romantic and friendship relationships, and sleep and memory. Conclusions Our findings suggest that the measures complement each other, but are less valuable in isolation for ALL survivors. Using a cancer survivorship measure, combined with some additional items covering priorities might provide a more holistic picture.
Description
The authors thank all the EORTC CLG members and the clinicians who participated in the studies. We also thank the EORTC HQ Data Management Department members (Sabrina Decot, Nicole Duez, Livia Giurgea, Bart Meulemans, Séraphine Rossi, and Gabriel Solbu) for their essential support. Finally, we thank Nancy van Damme and Linda Thibaut (Belgian Cancer Registry), and Pr. Jacqueline Clavel (Registre National des Hémopathies malignes de l'Enfant) for their support in the update of the vital status and of second neoplasms.
Date
2025-02
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Publisher
Research Projects
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Keywords
Acute lymphoblastic leukemia, Adolescent and young adult, Cancer survivors, Childhood cancer, Life priorities, Long-term outcomes, Methodological, Outcome measures, Quality of life, SDG 3 - Good Health and Well-being
Citation
Musoro, J, Sleurs, C, Rowsell, A, Suciu, S, Kicinski, M, Chantziara, S, Coens, C, Pe, M, Missotten, P, Vandecruys, E, Uyttebroeck, A, Dresse, M-F, Pluchart, C, Ferster, A, Freycon, C, van der Werff ten Bosch, J, Rohrlich, P, Benoit, Y, Piette, C, Darlington, A-S & European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life (QLG) and Children's Leukemia Group (CLG) 2025, 'Quality of life priorities of childhood acute lymphoblastic leukemia survivors enrolled in EORTC studies, and a comparison of instruments', Pediatric Blood & Cancer, vol. 72, no. 2, e31446. https://doi.org/10.1002/pbc.31446
License
info:eu-repo/semantics/openAccess