小儿急性淋巴细胞白血病幸存者健康相关生活质量评估：儿童、兄弟姐妹及父母的看法
Assessment of Health-Related Quality of Life in Pediatric Acute Lymphoblastic Leukemia Survivors: Perceptions of Children, Siblings, and Parents.
作者信息
Kızmazoğlu Deniz, Sarı Seher, Evim Sezgin Melike, Kantarcıoğlu Arzu, Tüfekçi Özlem, Demir Yenigürbüz Fatma, Baytan Birol, Yılmaz Şebnem, Güneş Adalet Meral, Ören Hale
机构信息
Dokuz Eylül University Faculty of Medicine, Department of Pediatric Hematology, İzmir, Turkey
Uludağ University Faculty of Medicine, Department of Pediatric Hematology, Bursa, Turkey
出版信息
Turk J Haematol. 2019 May 3;36(2):112-116. doi: 10.4274/tjh.galenos.2018.2018.0351. Epub 2018 Nov 6.
OBJECTIVE
We investigated the health-related quality of life (HRQL) in survivors of pediatric acute lymphoblastic leukemia (ALL) and evaluated the perceptions of the children, their siblings, and their parents.
MATERIALS AND METHODS
Seventy ALL survivors, who were between 7 and 17 years of age and had completed therapy ≥2 years, were included. The control group consisted of their healthy siblings. HRQL was assessed by the age-specific KINDL questionnaire.
RESULTS
No significant differences could be found among HRQL scores of ALL survivors with respect to variables such as sex, risk group, and having chronic illness. HRQL scores for physical well-being, emotional well-being, family, and social functioning of the patient and sibling self-reports and parent proxy reports were lower than the expected values for healthy and chronically ill children.
CONCLUSION
These results demonstrate that both ALL survivors and their families need help via psychological counseling programs to improve their HRQL even after completion of therapy.
目的
我们调查了儿童急性淋巴细胞白血病（ALL）幸存者的健康相关生活质量（HRQL），并评估了患儿、其兄弟姐妹及其父母的看法。
材料与方法
纳入70名年龄在7至17岁之间且已完成治疗≥2年的ALL幸存者。对照组由他们健康的兄弟姐妹组成。通过特定年龄的KINDL问卷评估HRQL。
结果
在ALL幸存者的HRQL得分中，未发现性别、风险组和患有慢性病等变量之间存在显著差异。患者和兄弟姐妹自我报告以及家长代理报告中，身体幸福感、情绪幸福感、家庭和社会功能的HRQL得分低于健康和慢性病患儿的预期值。
结论
这些结果表明，即使在治疗结束后，ALL幸存者及其家庭仍需要通过心理咨询项目获得帮助，以提高他们的HRQL。
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