Forinder U, Löf C, Winiarski J
Department of Paediatrics, Karolinska Institutet, Karolinska University Hospital, Huddinge, Stockholm, Sweden.
Bone Marrow Transplant. 2005 Jul;36(2):171-6. doi: 10.1038/sj.bmt.1705021.
A total of 52 children, age 9 or over and at least 3 years (median=8) beyond SCT for leukaemia (n=32) or nonmalignant diseases, participated in a single-centre study of health and quality of life (QoL). QoL and self-esteem were assessed with SCHQ-CF87, a generic multidimensional self-report instrument, and with 'I think I am'. As a group, the children had good QoL, but were below norm in the bodily pain (P<0.05), general health and self-esteem dimensions (P<0.01). Lansky or Karnofsky function levels were at a median of 90. Sense of coherence (SOC-13) was normal and correlated with SCHQ-CF87. Most children were subjectively and objectively in good health according to a self-assessment symptom inventory or by a medical record-based scoring of late effects, although pain was commonly reported. A total of 25% of the patients were rated as having moderate to severe late effects, without considering cataracts or infertility. Neither age at SCT, gender, malignant vs nonmalignant disease, nor stature influenced QoL significantly. Children with moderate to severe chronic graft-versus-host disease or cognitive deficits had lower QoL in some dimensions. No correlation was, however, found between the physician-rated total late effects score and overall QoL. Contrarily, QoL was clearly related to the degree of self-rated symptoms.
共有52名儿童参与了一项关于健康和生活质量（QoL）的单中心研究，这些儿童年龄在9岁及以上，距离白血病（n = 32）或非恶性疾病的造血干细胞移植（SCT）至少已有3年（中位数 = 8年）。使用通用的多维自我报告工具SCHQ - CF87和“我认为我是”来评估生活质量和自尊。总体而言，这些儿童的生活质量良好，但在身体疼痛（P < 0.05）、总体健康和自尊维度方面低于正常水平（P < 0.01）。兰斯基或卡诺夫斯基功能水平中位数为90。连贯感（SOC - 13）正常，且与SCHQ - CF87相关。根据自我评估症状清单或基于病历的晚期效应评分，大多数儿童在主观和客观上健康状况良好，尽管疼痛是常见的报告症状。共有25%的患者被评为有中度至重度晚期效应，未考虑白内障或不孕不育情况。造血干细胞移植时的年龄、性别、恶性与非恶性疾病以及身高均未对生活质量产生显著影响。患有中度至重度慢性移植物抗宿主病或认知缺陷的儿童在某些维度上生活质量较低。然而，医生评定的晚期效应总分与总体生活质量之间未发现相关性。相反，生活质量与自我评定症状的程度明显相关。
