Paediatric and Adolescent Oncology Department, Institut Gustave Roussy, Villejuif, France.
Eur J Cancer. 2011 Dec;47(18):2735-41. doi: 10.1016/j.ejca.2011.09.008. Epub 2011 Nov 3.
Cancer is the third leading cause of death in adolescents and young adults (AYA). Little is known, however, about how end-of-life unfolds for those who die of progressive disease. In order to better evaluate the specific needs of these patients, we performed this study providing baseline information about end-of-life care patterns for AYA in our department.
A standardised form was used to collect data concerning all 45 patients treated for a malignancy in the Paediatric and Adolescent Oncology Department at the Gustave Roussy Institute, and who had died of progressive disease above 13 years of age, over a two-year period.
The main diagnoses were sarcomas and brain tumours. Previous cancer-directed treatment included a median of 3 different chemotherapy regimens, high-dose chemotherapy with haematopoietic stem cell support for 13% and radiotherapy for 40%. One in every four patients had been enrolled in a clinical trial at diagnosis. Median survival was 18 months after the diagnosis and 7 months after the first relapse/progression. During the last week of life, the median number of physical symptoms was 4, mostly pain and dyspnoea. Frequent psychological symptoms were sadness, anxiety, fear and guilt. End-of-life care included transfusions, artificial nutrition, corticosteroids, pain control, sedation but also palliative chemotherapy. The median time spent in hospital during the last month of life was 16 days. Most patients had died in hospital.
The terminally ill adolescent displays notable challenges to care providers and requires a holistic approach with the help of a multidisciplinary team.
癌症是青少年和年轻人（AYA）的第三大死亡原因。然而，对于死于进行性疾病的人，临终过程如何却知之甚少。为了更好地评估这些患者的特殊需求，我们进行了这项研究，为我们部门的 AYA 提供了临终关怀模式的基线信息。
使用标准化表格收集了在古斯塔夫·鲁西研究所儿科和青少年肿瘤学系接受恶性肿瘤治疗且年龄超过 13 岁、死于进行性疾病的 45 名患者的数据。在两年期间，所有患者均接受了治疗。
主要诊断为肉瘤和脑肿瘤。先前的癌症定向治疗包括中位数为 3 种不同的化疗方案、13%的高剂量化疗联合造血干细胞支持和 40%的放疗。每 4 名患者中就有 1 名在诊断时参加了临床试验。诊断后中位生存时间为 18 个月，首次复发/进展后为 7 个月。在生命的最后一周，中位数有 4 种身体症状，主要是疼痛和呼吸困难。常见的心理症状是悲伤、焦虑、恐惧和内疚。临终关怀包括输血、人工营养、皮质类固醇、疼痛控制、镇静，但也包括姑息化疗。生命最后一个月在医院的中位住院时间为 16 天。大多数患者死于医院。
晚期青少年患者对护理提供者提出了重大挑战，需要多学科团队的整体方法。
