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Vol. 42. Issue S1.
Pages 67 (October 2020)
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Vol. 42. Issue S1.
Pages 67 (October 2020)
PP 56
Open Access
Health-related quality of life for children with leukemia: child and parental perceptions
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E. Ocak1,*, A. Koca Yozgat2, D. Kaçar2, I. Ayrancı Sucaklı1, N. Ozbek2, O. Şükran Üneri3, H. Yaralı2
1 Ankara City Hospital Children's Hospital, Department of Pediatrics, Ankara, Turkey
2 Ankara City Hospital Children's Hospital, Department of Pediatric Hematology, Ankara, Turkey
3 Ankara City Hospital, Children's Hospital, Department of Child and Adolescent Psychiatry, Ankara, Turkey
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Objective: The importance of health-related quality of life (HRQoL) in patients with acute lymphoblastic leukemia (ALL) has increased in recent years. This study aimed to assess HRQoL in children with ALL, affecting factors, and the relationship between parent proxy-report and child self-report HRQoL.

Methodology: The study sample consisted of 2–12 years old children with ALL between November 2016 and May 2017 at the University of Health Sciences Ankara Child Health and Diseases Hematology and Oncology Training and Research Hospital, Department of Pediatric Hematology. Patients and their parents (both mother and father) were enrolled in this cross-sectional study. Turkish version of the Pediatric Quality of Life Inventory (PedsQoLTM) 3.0 Cancer Modules were used to determine HRQoL. Patients’ diagnosis, risk group according to the ALL-IC BFM 2009 protocol [standard risk group (SR), intermediate-risk group (IR), high-risk group (HR)], treatment status, the period between the cessation of the chemotherapy to the study and total hospitalization period, was obtained from the patients’ medical record. Demographic data regarding the information on parents’ age, education level, employment status, monthly income, and chronic medical condition were noted. Cardiovascular diseases, cancer, asthma, diabetes mellitus, thyroid disorders, and psychiatric problems were classified as chronic medical conditions by the Centers for Disease Control.

Results: A total of 59 patients (52,5% male) with a mean age of 7.28±2.67 years at study period and 4.02±2.51 years at diagnosis were enrolled. 57 patients (96.6%) were pre-B ALL and two (3.4%) patients were T-ALL. According to the risk groups; 18 (30.5%) patients had SRG, 25 (42.4%) patients had MRG and 16 (27.1%) patients had HRG. There were not any significant differences between on-treatment and off-treatment groups, age at study period, age at diagnosis, gender. There was no significant relationship between total scores of PedsQL cancer module self-report and the leukemia or sociodemographic features. According to subscales of self-report form; nausea and operational anxiety scores differed significantly by the treatment status; communication score varied considerably by the total hospitalization period; pain and hurt, cognitive problems and perceived physical appearance scores differed significantly by maternal chronic disease status (p<0.05). No significant relationship was found between the total scores of the PedsQoLTM-cancer module parent-proxy report (father) and leukemia or sociodemographic features. The presence of maternal chronic disease was significantly related to the total score of the PedsQLTM-cancer module parent-proxy report (mother) (p<0.05). There was a moderate correlation between total scores of child and mother (p<0.05, r=0.419) but not with the father.

Conclusion: Children on-treatment had significant problems in nausea and procedural anxiety subscales; however, children who hospitalized more had fewer issues in the communication subscale. Also, children whose mother had chronic disease had poorer HRQoL regarding pain and hurt cognitive problems, and treatment anxiety. Given the importance of assessment and monitoring HRQoL in children with ALL, health professionals should be aware of how parents’ chronic disease affects HRQoL. Psychosocial support should be provided to children and their parents, especially whose parents have a chronic illness.

Idiomas
Hematology, Transfusion and Cell Therapy
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