Hayakawa Akira, Sato Iori, Kamibeppu Kiyoko, Ishida Yasushi, Inoue Masami, Sato Atsushi, Shiohara Masaaki, Yabe Hiromasa, Koike Kazutoshi, Adachi Souichi, Atsuta Yoshiko, Yamashita Takuya, Kanda Yoshinobu, Okamoto Shinichiro
Department of Palliative Care Medicine, Yodogawa Christian Hospital, 1-7-50, Kunijima, Higashi-Yodogawa-ku, Osaka, 533-0024, Japan.
Department of Family Nursing, School of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.
Int J Hematol. 2022 Jan;115(1):123-128. doi: 10.1007/s12185-021-03227-2. Epub 2021 Oct 3.
A nationwide cross-sectional survey was conducted in long-term survivors of allogeneic hematopoietic stem cell transplantation (HSCT) in childhood to investigate the effect of chronic graft-versus-host disease (cGVHD) on quality of life (QOL) and differences in QOL assessments between raters. QOL was evaluated by a visual analogue scale (VAS). Assessments were compared between the survivor, guardian, and attending pediatrician for those aged 15 years or younger, and between the survivor and attending pediatrician for those aged 16 years or older. For cGVHD, severity scores were obtained by organ and their association with the VAS score was analyzed. The average pediatrician-rated VAS score was higher than that of other raters for both patient age groups (< 15 years and > 16 years). By organ, involvement of the skin, digestive organs, and joints in GVHD affected the VAS scores. A high joint score was associated with a low VAS score, and conversely, a high lung score was associated with a low pediatrician-rated VAS score. Our results indicate that differences between raters must be considered when evaluating QOL of HSCT survivors, because patients appeared to experience grater inconvenience and difficulties due to joint GVHD than their pediatricians perceived.
一项针对儿童异基因造血干细胞移植（HSCT）长期存活者的全国性横断面调查展开，旨在探究慢性移植物抗宿主病（cGVHD）对生活质量（QOL）的影响以及评估者之间生活质量评估的差异。生活质量通过视觉模拟量表（VAS）进行评估。对15岁及以下的存活者、监护人及主治儿科医生之间的评估进行比较，对16岁及以上的存活者与主治儿科医生之间的评估进行比较。对于cGVHD，通过器官获取严重程度评分，并分析其与VAS评分的关联。两个患者年龄组（<15岁和>16岁）中，儿科医生评定的平均VAS评分均高于其他评估者。按器官来看，GVHD中皮肤、消化器官和关节的受累情况影响VAS评分。关节评分高与VAS评分低相关，相反，肺部评分高与儿科医生评定的VAS评分低相关。我们的结果表明，在评估HSCT存活者的生活质量时，必须考虑评估者之间的差异，因为患者似乎因关节GVHD而比其儿科医生所感知的经历了更大的不便和困难。
