Gerber N U, Zehnder D, Zuzak T J, Poretti A, Boltshauser E, Grotzer M A
University Children's Hospital, Steinwiesstrasse 75, CH-8032 Zurich, Switzerland.
Arch Dis Child. 2008 Jul;93(7):582-9. doi: 10.1136/adc.2007.116202. Epub 2007 Jul 18.
To study the outcome in children with brain tumours diagnosed in the first year of life, we followed up 27 consecutive children who were diagnosed between 1980 and 2005 in a single institution.
Tumour control and neurological, endocrine and cognitive complications and their impact on behavioural and emotional adjustment and health-related quality of life (HRQoL) were comprehensively assessed in 11 survivors (mean follow-up time 12.3 years).
Persistent neurological complications occurred in 9/11 patients, endocrine and growth complications in 4/11, and cognitive deficits leading to school problems/impaired choice of occupation in 8/10. Behavioural and psychological adjustment problems were reported by 4/6 patients and 7/10 parents. HRQoL as rated by patients and their parents was considerably lower than that of healthy controls. In comparison with healthy controls, social functioning was rated by the patients and the parents as the QoL dimension most affected. HRQoL was lowest for patients with high-grade tumour histology and more intense therapy.
Long-term survivors of brain tumours diagnosed in the first year of life are not only at great risk of neurological and cognitive complications, but also of social isolation thereby substantially decreasing self-rated HRQoL.
为研究出生后第一年被诊断为脑肿瘤的儿童的预后情况，我们对1980年至2005年间在单一机构连续诊断出的27名儿童进行了随访。
对11名幸存者（平均随访时间12.3年）全面评估了肿瘤控制情况、神经、内分泌和认知并发症及其对行为和情绪调节以及健康相关生活质量（HRQoL）的影响。
9/11的患者出现持续性神经并发症，4/11出现内分泌和生长并发症，8/10出现导致上学问题/职业选择受限的认知缺陷。4/6的患者和7/10的家长报告有行为和心理调节问题。患者及其家长评定的HRQoL显著低于健康对照。与健康对照相比，患者和家长将社会功能评定为受影响最大的生活质量维度。高级别肿瘤组织学类型且接受更强化治疗的患者HRQoL最低。
出生后第一年被诊断为脑肿瘤的长期幸存者不仅面临神经和认知并发症的巨大风险，还面临社会隔离，从而显著降低自我评定的HRQoL。
