Theunissen J M J, Hoogerbrugge P M, van Achterberg T, Prins J B, Vernooij-Dassen M J F J, van den Ende C H M
Department of Pediatric Hematology, Radboud University Nijmegen Medical Centre, The Netherlands.
Pediatr Blood Cancer. 2007 Aug;49(2):160-5. doi: 10.1002/pbc.21042.
The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address those symptoms.
Forty parents of children who died 1-3 years prior to data collection (structured questionnaire) were invited to participate in the study.
The response rate was 32 out of 40 parents (80%). Most frequently mentioned physical symptoms were pain, poor appetite, and fatigue. The children's most mentioned psychological symptoms were sadness, difficulty in talking to their parents about their feelings regarding illness and death and fear of being alone. The symptoms of fear of death of the child and fear of physical symptoms were most frequently mentioned parents' psychological symptoms. Health professionals addressed 82% of the children's physical symptoms, 43% of the children's psychological symptoms, and 56% of the parents' psychological symptoms. Parents indicated that after professional attention the proportion of children's physical symptoms that were completely or partially resolved was 18 and 26%, respectively. For children's psychological symptoms the figures were 9 and 25%, respectively, and for parents' psychological symptoms 2 and 23%, respectively.
The burden of symptoms of the child with cancer during the palliative phase and their parents is high. Health professionals focus mainly on the physical symptoms of the child. Relief of symptoms could not be achieved for a large proportion of symptoms. Further prospective research is necessary to investigate the kind, frequency and intensity of symptoms in order to tailor optimal palliative care to the needs of both child and parent.
本研究的目的是全面梳理癌症患儿及其父母在姑息治疗阶段的身体、心理和社会症状，以及医疗专业人员对这些症状的关注程度。
邀请了40名在数据收集前1至3年孩子已去世的家长（通过结构化问卷）参与研究。
40名家长中有32名回复（80%）。最常提及的身体症状是疼痛、食欲不振和疲劳。孩子们最常提及的心理症状是悲伤、难以与父母谈论自己对疾病和死亡的感受以及害怕孤独。孩子对死亡的恐惧和对身体症状的恐惧是家长最常提及的心理症状。医疗专业人员关注了82%的孩子的身体症状、43%的孩子的心理症状以及56%的家长的心理症状。家长表示，在得到专业关注后，孩子的身体症状完全或部分缓解的比例分别为18%和26%。孩子的心理症状的相应比例分别为9%和25%，家长的心理症状的相应比例分别为2%和23%。
癌症患儿及其父母在姑息治疗阶段的症状负担很重。医疗专业人员主要关注孩子的身体症状。大部分症状未能得到缓解。有必要进行进一步的前瞻性研究，以调查症状的种类、频率和强度，以便根据孩子和家长的需求提供最佳的姑息治疗。
