Quality of life priorities of childhood acute lymphoblastic leukemia survivors enrolled in EORTC studies, and a comparison of instruments

  • Jammbe Musoro
  • , Charlotte Sleurs
  • , Ali Rowsell
  • , Stefan Suciu
  • , Michal Kicinski
  • , Sofia Chantziara
  • , Corneel Coens
  • , Madeline Pe
  • , Pierre Missotten
  • , Els Vandecruys
  • , Anne Uyttebroeck
  • , Marie-Francoise Dresse
  • , Claire Pluchart
  • , Alina Ferster
  • , Claire Freycon
  • , Jutte van der Werff ten Bosch
  • , Pierre Rohrlich
  • , Yves Benoit
  • , Caroline Piette
  • , Anne-Sophie Darlington
  • European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life (QLG) and Children's Leukemia Group (CLG)

Research output: Contribution to journalArticleScientificpeer-review

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.
Original languageEnglish
Article numbere31446
Number of pages9
JournalPediatric Blood & Cancer
Volume72
Issue number2
Early online dateNov 2024
DOIs
Publication statusPublished - Feb 2025

Keywords

  • Acute lymphoblastic leukemia
  • Adolescent and young adult
  • Cancer survivors
  • Childhood cancer
  • Life priorities
  • Long-term outcomes
  • Methodological
  • Outcome measures
  • Quality of life

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