Sato Iori, Higuchi Akiko, Yanagisawa Takaaki, Murayama Shiho, Kumabe Toshihiro, Sugiyama Kazuhiko, Mukasa Akitake, Saito Nobuhito, Sawamura Yutaka, Terasaki Mizuhiko, Shibui Soichiro, Takahashi Jun, Nishikawa Ryo, Ishida Yasushi, Kamibeppu Kiyoko
Author Affiliations: Department of Family Nursing, Graduate School of Health Sciences and Nursing, Faculty of Medicine, The University of Tokyo, Japan (Drs Sato and Kamibeppu and Mss Higuchi and Murayama); Children'sCancer Association of Japan, Tokyo, (Ms Higuchi); Department of Neuro-oncology/Neurosurgery, Division of Pediatric Neuro-oncology, Comprehensive Cancer Center, International Medical Center, Saitama Medical University, Saitama, Japan (Dr Yanagisawa); Departments of Neurosurgery, Tohoku University Graduate School of Medicine, Japan (Dr Kumabe); Department of Clinical Oncology & Neuro-oncology Program, Cancer Treatment Center, Hiroshima University Hospital, Japan (Dr Sugiyama); Department of Neurosurgery, Faculty of Medicine, The University of Tokyo, Japan (Drs Mukasa and Saito); Sawamura Neurosurgery Clinic, Sapporo, Japan (Dr Sawamura); Department of Neurosurgery, Kurume University School of Medicine, Fukuoka, Japan (Dr Terasaki); Neurosurgery and Neuro-oncology Division, National Cancer Center Hospital, Tokyo, Japan (Dr Shibui); Department of Neurosurgery, Tazuke Kofukai Medical Research Institute and Kitano Hospital, Osaka, Japan (Dr Takahashi); Department of Neuro-oncology/Neurosurgery, Comprehensive Cancer Center, International Medical Center, Saitama Medical University, Japan (Dr Nishikawa); and Center for Child Health, Prefectural Central Hospital, Ehime, Japan (Dr Ishida).
Cancer Nurs. 2014 Nov-Dec;37(6):E1-E14. doi: 10.1097/NCC.0000000000000110.
Survivors of pediatric brain tumors are often affected by late effects, such as motility disturbance of limb(s), seizure, ocular/visual impairment, endocrine abnormality, and higher brain dysfunction, resulting from the disease and its treatment. Appropriate provision of supportive care will require understanding the effects of these experiences on survivors' health-related quality of life (HRQOL).
The aim of this study was to identify the relationships between late effects and specific aspects of the HRQOL of pediatric brain tumor survivors.
We distributed questionnaires for measuring HRQOL to 138 survivors and their parents at 8 hospitals and 1 clinic in Japan and simultaneously surveyed late effects using information provided by the survivors' attending physicians. We compared the HRQOL of survivors with and survivors without specific late effects.
A total of 106 survivors and their parents returned the questionnaires to the researchers. The HRQOL of survivors 18 years or older was negatively affected by all 5 late effects, indicating that their higher impairment was associated with diminished HRQOL. The HRQOL of survivors aged 12 to 17 years was negatively affected by 2 late effects (ocular/visual impairment and motility disturbance of the limbs). A part of the HRQOL subdomain (motor and cognitive functioning) of survivors aged 12 to 17 years was positively related to ocular/visual impairment.
Five late effects influenced the HRQOL of pediatric brain tumor survivors.
Nurses and other health professionals should provide specific care designed to support aspects of HRQOL affected by late effects. For example, survivors with ocular/visual impairment may be expected to require additional emotional support, and those with seizures or endocrine abnormalities may be expected to require additional support for sleep disorders.
小儿脑肿瘤幸存者常常受到迟发效应的影响，例如由疾病及其治疗导致的肢体运动障碍、癫痫、眼/视觉损害、内分泌异常和高级脑功能障碍。适当提供支持性护理需要了解这些经历对幸存者健康相关生活质量（HRQOL）的影响。
本研究的目的是确定小儿脑肿瘤幸存者的迟发效应与HRQOL的特定方面之间的关系。
我们在日本的8家医院和1家诊所，向138名幸存者及其父母发放了测量HRQOL的问卷，并同时利用幸存者主治医生提供的信息调查迟发效应。我们比较了有特定迟发效应和无特定迟发效应的幸存者的HRQOL。
共有106名幸存者及其父母将问卷返还给了研究人员。18岁及以上幸存者的HRQOL受到所有5种迟发效应的负面影响，这表明他们较高的损伤与HRQOL降低有关。12至17岁幸存者的HRQOL受到2种迟发效应（眼/视觉损害和肢体运动障碍）的负面影响。12至17岁幸存者HRQOL子领域的一部分（运动和认知功能）与眼/视觉损害呈正相关。
5种迟发效应影响了小儿脑肿瘤幸存者的HRQOL。
护士和其他卫生专业人员应提供专门护理，以支持受迟发效应影响的HRQOL方面。例如，预计有眼/视觉损害的幸存者可能需要额外的情感支持，而有癫痫或内分泌异常的幸存者可能需要针对睡眠障碍的额外支持。
