End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels Health Campus-Building K Laarbeeklaan 103, 1090, Brussels, Belgium.
Department of Public Health and Primary Care, Universitair Ziekenhuis Gent, Ghent University, Entrance 42 (K3), 6th floor, Corneel Heymanslaan 10, 9000, Ghent, Belgium.
Pediatr Res. 2021 Apr;89(5):1065-1077. doi: 10.1038/s41390-020-1036-x. Epub 2020 Jul 9.
Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at the end of life.
A systematic review was performed in five databases, January 2000 to July 2018 without language limit. Reviewers selected quantitative studies with a healthcare intervention, for example, medication or treatment, and QOL outcomes or QOL-related measures, for example, symptoms, for children aged 1-17 years with serious illness. One author assessed outcomes with the QualSyst and GRADE (Grades of Recommendation, Assessment, Development, and Evaluation) Framework; two authors checked a 25% sample. QOL improvement or reduction was categorized.
Thirty-six studies met the eligibility criteria studying 20 unique interventions. Designs included 1 randomized controlled trial, 1 cross-sectional study, and 34 cohort studies. Patient-reported symptom monitoring increased QOL significantly in cancer patients in a randomized controlled trial. Dexmedetomidine, methadone, ventilation, pleurodesis, and palliative care were significantly associated with improved QOL, and chemotherapy, stem cell transplant, and hospitalization with reduced QOL, in cohort studies.
Use of patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication may improve QOL. Curative therapy may reduce QOL.
QOL for children at the end of life may be improved with patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication. QOL for children at the end of life may be reduced with therapy with a curative intent, such as curative chemotherapy or stem cell transplant. A comprehensive overview of current evidence to elevate currently often-failing QOL management for children at the end of life. New paradigm-level indicators for appropriate and inappropriate QOL management in children at the end of life. New hypotheses for future research, guided by the current knowledge within the field. Various healthcare interventions (as described above) could or might be employed as tools to provide relief in QOL management for children with serious illness, such as cancer, at the end of life, and therefore could be discussed in pediatrician end-of-life training to limit the often-failed QOL management in this population, cave the one-size-fits-all approach for individual cases. Multidisciplinary team efforts and 24/7 presence, especially practical support for parents, might characterize effective palliative care team interventions for children with serious illness at the end of life, suggesting a co-regulating link between well-being of the child partly to that of the parents Hypothesis-oriented research is needed, especially for children with nonmalignant disorders, such as genetic or neurological disorders at the end of life, as well as QOL outcomes for intervention research and psychosocial or spiritual outcomes.
患有重病的儿童在生命末期会出现各种症状，而这些症状往往无法得到缓解。因此，我们需要对能够改善和提高患有重病的儿童生命末期生活质量（QOL）的医疗干预措施进行综述。
我们在五个数据库中进行了系统评价，检索时间为 2000 年 1 月至 2018 年 7 月，不限制语言。综述人员选择了具有医疗干预措施（例如药物或治疗）和 QOL 结果或与 QOL 相关的措施（例如症状）的定量研究，纳入对象为年龄在 1-17 岁之间患有严重疾病的儿童。一名作者使用 QualSyst 和 GRADE（推荐分级的评估、制定与评价）框架评估结局；另外两名作者检查了 25%的样本。将 QOL 的改善或降低进行分类。
符合纳入标准的研究有 36 项，涉及 20 种不同的干预措施。设计类型包括 1 项随机对照试验、1 项横断面研究和 34 项队列研究。在一项随机对照试验中，患者报告的症状监测显著提高了癌症患者的 QOL。在队列研究中，右美托咪定、美沙酮、通气、胸膜固定术和姑息治疗与 QOL 改善显著相关，而化疗、干细胞移植和住院与 QOL 降低显著相关。
使用患者自控症状反馈、配备全职实用支持的多学科姑息治疗团队、吸入疗法和非标签镇静药物可能会提高 QOL。治愈性治疗可能会降低 QOL。
使用患者自控症状反馈、配备全职实用支持的多学科姑息治疗团队、吸入疗法和非标签镇静药物，可能会提高患有重病的儿童在生命末期的 QOL。具有治愈意图的治疗，如治愈性化疗或干细胞移植，可能会降低儿童在生命末期的 QOL。这是对当前证据的全面综述，旨在提高目前在儿童生命末期管理中经常失败的 QOL 管理水平。针对儿童生命末期适当和不适当 QOL 管理的全新范式水平指标。以该领域的现有知识为指导，提出了未来研究的新假设。上述各种医疗干预措施（如上文所述）可作为工具，用于改善患有严重疾病（如癌症）的儿童的 QOL 管理，因此可在儿科医生的生命末期培训中进行讨论，以限制该人群中经常失败的 QOL 管理，避免一刀切的方法。多学科团队的努力和 24/7 的存在，尤其是为父母提供的实际支持，可能是对患有严重疾病的儿童的姑息治疗团队干预措施的有效特征，这表明儿童的幸福感与父母的幸福感之间存在一定的相互关系。需要进行假设导向的研究，特别是针对患有非恶性疾病（如遗传性或神经发育性疾病）的儿童，以及干预研究的 QOL 结局和心理社会或精神结局。
