adolescent; cancer survivors; child; leukemia, acute lymphoblastic; quality of life; survivorship; young adult; Psychiatry and Mental health; Oncology; Experimental and Cognitive Psychology
Abstract :
[en] ("[en] OBJECTIVE: Improved treatment landscape has led to better outcomes for paediatric acute lymphoblastic leukemia (ALL) survivors. As the number of survivors increase, we need to elucidate the long-term quality of life (QoL) and domains of complaints in these patients. Furthermore, the main priorities of these patients need to be clarified. We assessed long-term QoL outcomes of survivors of childhood ALL compared to matched population controls.
METHODS: QoL data were collected from survivors recruited in France and Belgium between 2012 and 2017, including the Short Form Health Survey (SF-12) and the Quality of Life Systemic Inventory (QLSI). The Wilcoxon test was used to compare SF-12 scale scores between survivors and matched population controls. For the QLSI, comparisons were mainly descriptive.
RESULTS: One hundred and eighty-six survivors (mean age: 27.6 years; range: 18.1-52.8) at follow-up completed QoL measures, amongst whom 180 were matched to controls. Overall, survivors had higher QoL on all SF12 scale scores, indicating that they had better functioning compared to controls. Statistically significant differences on the SF12 were observed for Vitality, Social Functioning, Role Limitations due to Emotional Problems and Mental Health scales. QLSI outcomes suggested that survivors were happier than controls with Couple and Social Relations. Controls were unhappiest compared to survivors with Money, Love life, Self-esteem, Nutrition and Paid Work.
CONCLUSIONS: Our findings suggest that survivors of childhood ALL have better QoL outcomes on some domains compared to the general population, specifically around social and emotional functioning, and that they tend to prioritize their relationships more. Interventions for improving QoL outcomes, might build on existing positive experiences with family, friends and partners.","[en] ","")
Disciplines :
Pediatrics Oncology Public health, health care sciences & services
Author, co-author :
Chantziara, Sofia; School of Health Sciences, University of Southampton, Southampton, UK
Musoro, Jammbe; European Organisation for Research and Treatment of Cancer (EORTC), Brussels, Belgium
Rowsell, Alison C; School of Health Sciences, University of Southampton, Southampton, UK
Sleurs, Charlotte; Department of Oncology, KU Leuven, Leuven, Belgium ; Department of Cognitive Neuropsychology, Tilburg University, Tilburg, The Netherlands
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
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
Missotten, Pierre ; Université de Liège - ULiège > Département de Psychologie > Psychologie de la sénescence et du vieillissement
Vandecruys, Els; Department of Pediatric Hematology-Oncology, Ghent University Hospital, Ghent, Belgium
Uyttebroeck, Anne; Department of Pediatric Hemato-Oncology, University Hospital Leuven, Leuven, Belgium
Dresse, Marie-Françoise ; Centre Hospitalier Universitaire de Liège - CHU > > Service de pédiatrie
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
Bosch, Jutte Van Der Werff Ten; VUB, Brussels, Belgium
Rohrlich, Pierre; Pediatric Oncology, CHU Nice, Nice, France
Benoit, Yves; Department of Pediatric Hematology-Oncology, Ghent University Hospital, Ghent, Belgium
Darlington, Anne-Sophie; School of Health Sciences, University of Southampton, Southampton, UK
Piette, Caroline ; Centre Hospitalier Universitaire de Liège - CHU > > Service de pédiatrie
European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life (QLG) and Children's Leukemia Group (CLG)
Hunger SP, Mullighan CG. Acute lymphoblastic leukemia in children. N Engl J Med. 2015;373(16):1541-1552. https://doi.org/10.1056/NEJMra1400972
American Cancer Society. What is acute lymphocytic leukemia (ALL)? Accessed November 2, 2021. https://www.cancer.org/cancer/acute-lymphocytic-leukemia/about/what-is-all.html
Childhood cancer survivorship: improving care and quality of life. In: Hewitt M, Weiner SL, Simone JV, eds. Institute of Medicine and National Research Council. National Academies Press; 2003.
Anestin AS, Lippé S, Robaey P, et al. Psychological risk in long-term survivors of childhood acute lymphoblastic leukemia and its association with functional health status: a PETALE cohort study. Pediatr Blood Cancer. 2018;65(11):e27356. https://doi.org/10.1002/pbc.27356
Gurney JG, Krull KR, Kadan-Lottick N, et al. Social outcomes in the Childhood Cancer Survivor Study cohort. J Clin Oncol. 2009;27(14):2390-2395. https://doi.org/10.1200/JCO.2008.21.1458
Jervaeus A, Lampic C, Johansson E, Malmros J, Wettergren L. Clinical significance in self-rated HRQoL among survivors after childhood cancer–demonstrated by anchor-based thresholds. Acta Oncol 2014;53(4):486-492. https://doi.org/10.3109/0284186X.2013.844852
Wengenroth L, Gianinazzi ME, Rüegg CS, et al. Health-related quality of life in young survivors of childhood cancer. Qual Life Res. 2015;24(9):2151-2161. https://doi.org/10.1007/s11136-015-0961-3
Barakat LP, Alderfer MA, Kazak AE. Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. J Pediatr Psychol. 2006;31(4):413-419. https://doi.org/10.1093/jpepsy/jsj058
Thornton AA. Perceiving benefits in the cancer experience. J Clin Psychol Med Settings. 2002;9(2):153-165. https://doi.org/10.1023/A:1014996127535
Chesler M, Parry C. Thematic evidence of psychosocial thriving in survivors of childhood cancer. Qual Health Res. 2005;15(8):1055-1073. https://doi.org/10.1177/1049732305277860
Doukkali EB, Winterling J, Eriksson LE, Lampic C, Hagström AS, Wettergren L. Adolescents’ and young adults’ experiences of childhood cancer: descriptions of daily life 5 years after diagnosis. Cancer Nurs. 2013;36(5):400-407. https://doi.org/10.1097/NCC.0b013e31829fd80e
Badr H, Chandra J, Paxton RJ, et al. Health-related quality of life, lifestyle behaviors, and intervention preferences of survivors of childhood cancer. J Cancer Surviv. 2013;7(4):523-534. https://doi.org/10.1007/s11764-013-0289-3
Fluchel M, Horsman JR, Furlong W, Castillo L, Alfonz Y, Barr RD. Self and proxy-reported health status and health-related quality of life in survivors of childhood cancer in Uruguay. Pediatr Blood Cancer. 2008;50(4):838-843. https://doi.org/10.1002/pbc.21299
Gordijn MS, van Litsenburg RR, Gemke RJ, et al. Sleep, fatigue, depression, and quality of life in survivors of childhood acute lymphoblastic leukemia. Pediatr Blood Cancer. 2013;60(3):479-485. https://doi.org/10.1002/pbc.24261
Meeske KA, Siegel SE, Globe DR, Mack WJ, Bernstein L. Prevalence and correlates of fatigue in long-term survivors of childhood leukemia. J Clin Oncol. 2005;23(24):5501-5510. https://doi.org/10.1200/JCO.2005.03.210
Reinfjell T, Lofstad GE, Veenstra M, Vikan A, Diseth TH. Health-related quality of life and intellectual functioning in children in remission from acute lymphoblastic leukaemia. Acta Paediatr. 2007;96(9):1280-1285. https://doi.org/10.1111/j.1651-2227.2007.00383.x
Wright MJ, Galea V, Barr RD. Self-perceptions of physical activity in survivors of acute lymphoblastic leukemia in childhood. Pediatr Exerc Sci. 2003;15(2):191-201. https://doi.org/10.1123/pes.15.2.191
Zeltzer LK, Lu Q, Leisenring W, et al. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the Childhood Cancer Survivor Study. Cancer Epidemiol Prev Biomarkers. 2008;17(2):435-446. https://doi.org/10.1158/1055-9965.EPI-07-2541
Essig S, Nicolas X, Strippoli MPF, et al. Health-related quality of life in long-term survivors of relapsed childhood acute lymphoblastic leukemia. PLoS One. 2012;7(5):e38015. https://doi.org/10.1371/journal.pone.0038015
Furlong W, Rae C, Feeny D, et al. Health-related quality of life among children with acute lymphoblastic leukemia. Pediatr Blood Cancer. 2012;59(4):717-724. https://doi.org/10.1002/pbc.24096
Harila MJ, Salo J, Lanning M, Vilkkumaa I, Harila-Saari AH. High health-related quality of life among long-term survivors of childhood acute lymphoblastic leukemia. Pediatr Blood Cancer. 2010;55(2):331-336. https://doi.org/10.1002/pbc.22531
Nayiager T, Anderson L, Cranston A, Athale U, Barr RD. Health-related quality of life in long-term survivors of acute lymphoblastic leukemia in childhood and adolescence. Qual Life Res. 2017;26(5):1371-1377. https://doi.org/10.1007/s1113-016-1462-8
Ramchandren S, Leonard M, Mody RJ, et al. Peripheral neuropathy in survivors of childhood acute lymphoblastic leukemia. J Peripher Nerv Syst. 2009;14(3):184-189. https://doi.org/10.1111/j.1529-8027-2009.00230.x
Sadighi ZS, Ness KK, Hudson MM, et al. Headache types, related morbidity, and quality of life in survivors of childhood acute lymphoblastic leukemia: a prospective cross-sectional study. Eur J Paediatr Neurol. 2014;18(6):722-729. https://doi.org/10.1016/j.ejpn.2014.06.006
Smith K, Ostroff J, Tan C, Lesko L. Alterations in self-perceptions among adolescent cancer survivors. Cancer Invest. 1991;9(5):581-588. https://doi.org/10.3109/07357909109018956
Andrés-Jensen L, Larsen HB, Johansen C, Frandsen TL, Schmiegelow K, Wahlberg A. Everyday life challenges among adolescent and young adult survivors of childhood acute lymphoblastic leukemia: an in-depth qualitative study. Psycho-Oncology. 2020;29(10):1630-1637. https://doi.org/10.1002/pon.5480
Berbis J, Oudin C, Alessandrini M, et al. Quality of life in minor siblings of childhood leukemia survivors, long-term after diagnosis: a LEA study (for Leucemies de l'Enfant et de l'Adolescent--childhood and adolescent leukemia). Psycho-Oncology. 2015;24(6):661-668. https://doi.org/10.1002/pon.3709
Aili K, Arvidsson S, Nygren JM. Health related quality of life and buffering factors in adult survivors of acute pediatric lymphoblastic leukemia and their siblings. Health Qual Life Outcome. 2021;19(1):1-10. https://doi.org/10.1186/s12955-021-01700-4
Piette C, de Rojas T, Suciu S, et al. Lessons learnt from the medical and psychosocial evaluation of childhood acute lymphoblastic leukemia (ALL) survivors enrolled in EORTC Children Leukemia Group Trials between 1971 and 1998 and future perspectives for long-term outcome research. J Cancer Policy. 2018;15:82-86. https://doi.org/10.1016/j.jcpo.2018.02.006
Jenkinson C, Layte R. Development and testing of the UK SF-12. J Health Serv Res Pol. 1997;2(1):14-18. https://doi.org/10.1177/135581969700200105
Zebrack BJ, Donohue JE, Gurney JG, Chesler MA, Bhatia S, Landier W. Psychometric evaluation of the impact of cancer (IOC-CS) scale for young adult survivors of childhood cancer. Qual Life Res. 2010;19(2):207-218. https://doi.org/10.1007/s11136-009-9576-x
Duquette RL, Dupuis G, Perrault J. A new approach for quality of life assessment in cardiac patients: rationale and validation of the Quality of Life Systemic Inventory. Can J Cardiol. 1994;10(1):106-112. PMID: 8111664
Reulen RC, Zeegers MP, Jenkinson C, et al. The use of the SF-36 questionnaire in adult survivors of childhood cancer: evaluation of data quality, score reliability, and scaling assumptions. Health Qual Life Outcome. 2006;4(1):77. https://doi.org/10.1186/1477-7525-4-77
Coutu M.-F, Durland M.-J, Loisel P, Dupuis G, Gervais S. Measurement properties of a new quality of life measure for patients with work disability associated with musculoskeletal pain. J Occup Rehabil. 2005;15(3):295-312. https://doi.org/10.1007/s10926-005-5938-6
Version SAS. 9.4 of the SAS System for Windows. SAS Institute Inc; 2017.
Fardell JE, Vetsch J, Trahair T, et al. Health-related quality of life of children on treatment for acute lymphoblastic leukemia: a systematic review. Pediatr Blood Cancer. 2017;64(9):e26489. https://doi.org/10.1002/pbc.26489
Kunin-Batson A, Kadan-Lottick N, Zhu L, et al. Predictors of independent living status in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Pediatr Blood Cancer. 2011;57(7):1197-1203. https://doi.org/10.1002/pbc.22982
Cheon J, Lee YJ, Jo JC, et al. Late complications and quality of life assessment for survivors receiving allogeneic hematopoietic stem cell transplantation. Support Care Cancer. 2021;29(2):975-986. https://doi.org/10.1007/s00520-020-05572-0
Vilmer E, Suciu S, Ferster A, et al. Long-term results of three randomized trials (58831, 58832, 58881) in childhood acute lymphoblastic leukemia: a CLCG-EORTC report. Leukemia. 2000;14(12):2257-2266. https://doi.org/10.1038/sj.leu.2401960
Piette C, Suciu S, Bertrand Y, et al. Long-term outcome evaluation of medium/high risk acute lymphoblastic leukaemia children treated with or without cranial radiotherapy in the EORTC 58832 randomized study. Br J Haematol. 2020;189(2):351-362. https://doi.org/10.1111/bjh.16337
Reinfjell T, Tremolada M, Zeltzer LK. A review of demographic, medical, and treatment variables associated with health-related quality of life (HRQOL) in survivors of hematopoietic stem cell (HSCT) and bone marrow transplantation (BMT) during childhood. Front Psychol. 2017;8:253. https://doi.org/10.3389/fpsyg.2017.00253. PMID: 28344563; PMCID: PMC5344915
Enskär K, Berterö C. Young adult survivors of childhood cancer; experiences affecting self-image, relationships, and present life. Cancer Nurs. 2010;33(1):E18-E24. https://doi.org/10.1097/NCC.0b013e3181b6365a
Nahata L, Morgan TL, Lipak KG, Olshefski RS, Gerhardt CA, Lehmann V. Romantic relationships and physical intimacy among survivors of childhood cancer. J Adolesc Young Adult Oncol. 2020;9(3):359-366. https://doi.org/10.1089/jayao.2019.0114
Stein KD, Syrjala KL, Andrykowski MA. Physical and psychological long-term and late effects of cancer. Cancer. 2008;112(S11):2577-2592. https://doi.org/10.1002/cncr.23448
Kent EE, Sender LS, Morris RA, et al. Multilevel socioeconomic effects on quality of life in adolescent and young adult survivors of leukemia and lymphoma. Qual Life Res. 2013;22(6):1339-1351. https://doi.org/10.1007/s11136-012-0254-z