Background: 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).
Objective: The aim of this study was to identify the relationships between late effects and specific aspects of the HRQOL of pediatric brain tumor survivors.
Methods: 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.
Results: 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.
Conclusions: Five late effects influenced the HRQOL of pediatric brain tumor survivors.
Implications for Practice: 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.
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).
This work was supported by grants from the Society for the Promotion of Science (Kakenhi grant number 21659516) 2009–2011, the Yamaji Fumiko Nursing Education and Research Foundation 2010–2011, and the Children’s Cancer Association of Japan 2009.
The authors have no conflicts of interest to disclose.
Correspondence: Kiyoko Kamibeppu, PhD, RN, Faculty of Medicine, Department of Family Nursing, Graduate School of Health Sciences and Nursing, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-0033, Japan (firstname.lastname@example.org).
Accepted for publication October 2, 2013.