acute lymphoblastic leukemia; adolescent and young adult; cancer survivors; childhood cancer; life priorities; long‐term outcomes; methodological; outcome measures; quality of life; Humans; Male; Female; Child; Adolescent; Surveys and Questionnaires; Child, Preschool; Adult; Young Adult; Follow-Up Studies; Quality of Life; Cancer Survivors/psychology; Precursor Cell Lymphoblastic Leukemia-Lymphoma/psychology; Precursor Cell Lymphoblastic Leukemia-Lymphoma/therapy; Pediatrics, Perinatology and Child Health; Hematology; Oncology
Abstract :
[en] [en] 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.
Musoro, Jammbe; European Organisation for Research and Treatment of Cancer (EORTC), Brussels, Belgium
Sleurs, Charlotte; Department of Cognitive Neuropsychology, Tilburg University, Tilburg, The Netherlands ; Department of Paediatric Oncology, KU Leuven, Leuven, Belgium
Rowsell, Ali; 'Primary Care Research Centre, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Southampton, UK
Suciu, Stefan; European Organisation for Research and Treatment of Cancer (EORTC), Brussels, Belgium
Kicinski, Michal ; European Organisation for Research and Treatment of Cancer (EORTC), Brussels, Belgium
Chantziara, Sofia; 'Primary Care Research Centre, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Southampton, UK
Coens, Corneel; European Organisation for Research and Treatment of Cancer (EORTC), Brussels, Belgium
Pe, Madeline; European Organisation for Research and Treatment of Cancer (EORTC), Brussels, Belgium
Missotten, Pierre ; Université de Liège - ULiège > Département de Psychologie > Psychologie de la sénescence et du vieillissement
Vandecruys, Els; Department of Pediatric Hemato-Oncology, Ghent University Hospital, Ghent, Belgium
Uyttebroeck, Anne; Department of Pediatric Hemato-Oncology, University Hospital Leuven, Leuven, Belgium
Dresse, Marie-Françoise ; Université de Liège - ULiège > Département des sciences cliniques > Pédiatrie immuno-hémato-oncologique
Pluchart, Claire; Department of Pediatric Haematology and Oncology, CHU Reims, Reims, France
Ferster, Alina ; Department of Hemato-Oncology, HUDERF (ULB), Brussels, Belgium
Freycon, Claire; Department of Pediatric Hematology-Oncology, CHU Grenoble, Grenoble, France
Van Der Werff Ten Bosch, Jutte; Department of Pediatrics, UZ Brussel, Brussels, Belgium
Rohrlich, Pierre; Pediatric Oncology, CHU Nice, Nice, France
Benoit, Yves; Department of Pediatric Hemato-Oncology, Ghent University Hospital, Ghent, Belgium
Piette, Caroline ; Université de Liège - ULiège > Département des sciences cliniques
Darlington, Anne-Sophie ; 'Primary Care Research Centre, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Southampton, UK
European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life (QLG) and Children's Leukemia Group (CLG)
This work was supported by the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group grant 013/2016, Fonds Cancer (FOCA) from Belgium, and the KU Leuven from Belgium. Funding
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