From childhood to adulthood: long-term outcome of medulloblastoma patients. The Institut Curie experience (1980-2000)
From childhood to adulthood: long-term outcome of medulloblastoma patients. The Institut Curie experience (1980-2000)
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DOI：
10.1007/s11060-009-9927-z
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发表时间：
2009-11-01
影响因子：
3.9
通讯作者：
Doz, F.
中科院分区：
文献类型：
--
作者：
Frange, P.;Alapetite, C.;Doz, F.
回顾了1980年至2000年在居里研究所治疗的髓母细胞瘤患者。仅考虑主要治疗包括颅脊髓放射的患者。存活的患者通过使用健康效用指数（HUI）的自我报告问卷进行识别和评估。记录了心理社会功能、就业和其他与健康有关的指标。在研究期间，73例患者接受了治疗。从诊断开始的中位随访时间为14.4年，49例患者存活，45例存活患者可以联系。晚期后遗症常见，尤其是神经功能缺损（71%）和内分泌并发症（52%）。在大多数患者中发现了心理社会功能障碍，包括就业、驾驶能力、独立生活和婚姻状况。大多数长期的髓母细胞瘤幸存者在几个领域遭受持续的缺陷，对他们的心理社会功能产生重大影响。这些发现加强了早期干预计划对所有幸存者的重要性，以减少他们的疾病的心理社会影响。
Medulloblastoma patients treated at the Institute Curie between 1980 and 2000 were reviewed. Only patients whose primary treatment included craniospinal radiation were considered. Surviving patients were identified and evaluated by means of self-report questionnaires using the Health Utility Index (HUI). Psychosocial functioning, employment, and other health-related indicators were recorded. Seventy-three patients were treated during the study period. At a median follow-up from diagnosis of 14.4 years, 49 patients were alive and 45 surviving patients could be contacted. Late sequelae were frequent, particularly neurological deficits (71%) and endocrine complications (52%). Impairments of psychosocial functioning, including employment, driving capacity, independent living, and marital status, were identified in most patients. Most long-term medulloblastoma survivors suffer persistent deficits in several domains, with a significant impact on their psychosocial functioning. These findings reinforce the importance of early intervention programs for all survivors in order to reduce the psychosocial impacts of their disease.