Bowers Daniel C, Adhikari Soumya, El-Khashab Yasmin M, Gargan Lynn, Oeffinger Kevin C
Department of Pediatrics MC 9063, UT Southwestern Medical Center at Dallas, Dallas, Texas 75390-9063., USA.
Pediatr Blood Cancer. 2009 Dec 15;53(7):1295-301. doi: 10.1002/pbc.22240.
Despite recognition that childhood brain tumor survivors often suffer multiple late effects following therapy, little is known regarding the long-term follow-up (LTFU) programs for these patients.
A 16-question survey was mailed to member institutions of the Children's Oncology Group in the United States. Institutions were asked about the size of their brain tumor program, activities of the LTFU programs and perceived barriers to follow-up.
One hundred forty-five (74%) of 197 institutions returned surveys. Care for patients <21 years old at diagnosis who are >2 years following completion of therapy was provided at a designated neuro-oncology LTFU clinic (31.2%), a general LTFU program for childhood cancer survivors (30.4%), or a general pediatric oncology program (29.7%). Institutions with a neuro-oncology LTFU clinic were more likely to use neuro-psychological testing following radiation therapy (P = 0.001), have longer duration of continued surveillance imaging (P = 0.02), use growth hormone replacement for medulloblastoma survivors (P < 0.001) and continue the use of growth hormone into adulthood (P = 0.05) than those with a general pediatric oncology program. Perceived barriers to care of brain tumor survivors included limited access and lack of insurance (32.1%), lack of funding or dedicated time for providers (22.9%), patients' uncertainty about need to follow-up (20.6%), and patients' desire to not be followed in a pediatric cancer program (12.2%).
Considerable variation exists across institutions in the United States in the delivery of follow-up care for survivors of childhood brain tumors. We encourage additional investigation to better define and implement optimal follow-up care for childhood brain tumor survivors.
尽管人们认识到儿童脑肿瘤幸存者在治疗后常常遭受多种晚期效应，但对于这些患者的长期随访（LTFU）项目却知之甚少。
向美国儿童肿瘤协作组的成员机构邮寄了一份包含16个问题的调查问卷。询问各机构其脑肿瘤项目的规模、长期随访项目的活动以及随访中察觉到的障碍。
197家机构中有145家（74%）回复了调查问卷。对于诊断时年龄小于21岁且治疗结束超过2年的患者，在指定的神经肿瘤长期随访诊所（31.2%）、儿童癌症幸存者的一般长期随访项目（30.4%）或一般儿科肿瘤项目（29.7%）中提供护理。与一般儿科肿瘤项目的机构相比，设有神经肿瘤长期随访诊所的机构更有可能在放疗后进行神经心理学测试（P = 0.001），持续监测成像的时间更长（P = 0.02），对髓母细胞瘤幸存者使用生长激素替代疗法（P < 0.001），并将生长激素的使用持续到成年期（P = 0.05）。脑肿瘤幸存者护理中察觉到的障碍包括就诊机会有限和缺乏保险（32.1%）、提供者缺乏资金或专门时间（22.9%）、患者对随访必要性的不确定性（20.6%）以及患者不想在儿科癌症项目中接受随访（12.2%）。
在美国，各机构在为儿童脑肿瘤幸存者提供后续护理方面存在很大差异。我们鼓励进行更多研究，以更好地定义和实施针对儿童脑肿瘤幸存者的最佳后续护理。
