Pediatric Oncology and Hematology Unit, Department of Women, Child and Adolescent, University Hospitals of Geneva, Geneva, Switzerland.
Faculty of Medicine, University of Geneva, Geneva, Switzerland.
Swiss Med Wkly. 2022 Apr 7;152:w30153. doi: 10.4414/smw.2022.w30153. eCollection 2022 Mar 28.
Although the 5-year survival for pediatric cancer in Switzerland today is over 85%, two thirds of the survivors will develop chronic health conditions due to the disease or to the toxicity of treatments. In this context, a long-term personalized follow-up program (LTFU program), was set up at the University Hospitals of Geneva (HUG) since 2015. We aimed to describe this program, more particularly the specialized follow-ups set up, the cumulative burden of the chronic health conditions, and finally assess the satisfaction of patients and/or their parents with it.
A monocentric retrospective study was performed where data on follow-ups and chronic health conditions were collected from medical charts of people who had childhood cancer and who participated in the LTFU program. Chronic health conditions were classified and graded in severity with the Common Terminology Criteria of Adverse Events (CTCAE) classification, version 5.0. This study was completed by a satisfaction survey among patients and/or their parents.
Out of 83 eligible patients, 51 (61.4%) accepted to participate, with an average age of 17.4 years (range, 10 to 35) at the time of study. Mean delay since end of treatment was 9.8 years (range: 4.5-31). The prevalence of any chronic health condition is 82.3%, 43.1% for having 1 or 2 chronic health conditions and 39.2% for having more than 3 chronic health conditions. The total number of Grade CTCAE 1-4 chronic health conditions was 118 for the 51 participants, with a mean of 2.3 (range, 0 to 7) disorders per patient. The most frequently affected systems were neurological (14.4%), musculoskeletal (13.6%), endocrine (9.3%) and renal (9.3%) systems. Sarcoma, central nervous system tumors and neuroblastoma were the diagnoses associated with the highest average number of chronic health conditions. Among the 118 questionnaires sent to patients and/or parents, we received 82 (69.5%) responses. The level of satisfaction was good to excellent for more than 90% of the participants, for all the items evaluated.
Childhood cancer survivors present a significant number of chronic health conditions, confirming the need for appropriate long-term, multidisciplinary and patient-specific medical follow-up based on the primary diagnosis and therapies received. Moreover, the LTFU program at the HUG was highly appreciated by patients and/or their parents and this motivates its permanent conduct.
尽管如今瑞士儿科癌症患者的 5 年生存率超过 85%，但仍有三分之二的幸存者会因疾病或治疗毒性而出现慢性健康问题。在这种情况下，自 2015 年以来，日内瓦大学附属医院（HUG）设立了长期个性化随访项目（LTFU 项目）。我们旨在描述该项目，特别是设立的专门随访、慢性健康问题的累积负担，以及最终评估患者及其父母的满意度。
这是一项单中心回顾性研究，从参加 LTFU 项目的儿童癌症患者的病历中收集随访和慢性健康状况的数据。使用通用不良事件术语标准（CTCAE）第五版对慢性健康状况进行分类和严重程度分级。该研究通过对患者及其父母进行满意度调查来完成。
在 83 名符合条件的患者中，有 51 名（61.4%）接受了调查，他们在研究时的平均年龄为 17.4 岁（10-35 岁）。从治疗结束到研究的平均时间为 9.8 年（4.5-31 年）。任何慢性健康问题的患病率为 82.3%，43.1%的患者有 1-2 种慢性健康问题，39.2%的患者有超过 3 种慢性健康问题。51 名参与者中有 118 人患有 CTCAE 1-4 级慢性健康问题，平均每人 2.3 种（0-7 种）疾病。受影响最严重的系统是神经系统（14.4%）、肌肉骨骼系统（13.6%）、内分泌系统（9.3%）和肾脏系统（9.3%）。肉瘤、中枢神经系统肿瘤和神经母细胞瘤是与慢性健康问题数量最多相关的诊断。在发送给患者及其父母的 118 份问卷中，我们收到了 82 份（69.5%）回复。对于所有评估的项目，超过 90%的参与者对满意度评价良好或优秀。
儿童癌症幸存者存在大量的慢性健康问题，这证实了需要根据主要诊断和接受的治疗，提供适当的长期、多学科和个体化的医疗随访。此外，HUG 的 LTFU 项目得到了患者及其父母的高度评价，这激励我们继续开展该项目。
