Signorelli Christina, Wakefield Claire E, McLoone Jordana K, Fardell Joanna E, Lawrence Renae A, Osborn Michael, Truscott Jo, Tapp Heather, Cohn Richard J
Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.
School of Women's and Children's Health, Discipline of Paediatrics, UNSW Medicine, University of New South Wales, NSW, Australia.
Asia Pac J Clin Oncol. 2017 Dec;13(6):407-415. doi: 10.1111/ajco.12700. Epub 2017 Jul 3.
Childhood cancer survivors remain at risk of developing life-altering and/or life-threatening health conditions following the completion of curative treatment. However, no uniform model of care for childhood cancer survivors exists in Australia and New Zealand (ANZ). This study reports on current childhood cancer survivorship care in ANZ, highlighting the challenges childhood cancer survivor long-term follow-up (LTFU) clinics face.
We conducted semistructured, telephone interviews with the pediatric medical director and clinical nurse consultant from all 11 LTFU clinics at tertiary referral pediatric oncology units across ANZ (n = 19; 100% response rate). Data were analyzed using NVivo10.
Participants unanimously identified limited options for transitioning older survivors out of pediatrics and inadequate funding as central challenges to the provision of best-practice LTFU care. There is duplication of resource development between clinics (e.g. survivorship care plan templates and clinic systems). Although participants recognized an overly prescriptive model of LTFU care as potentially unfeasible, the majority endorsed a national, or even bi-national, model of care that could be tailored to meet the needs of their local environment.
The lack of an accepted model of optimal childhood cancer survivorship care across ANZ prevents the synergistic development of survivorship guidelines, survivorship care plans, transition pathways, information technology solutions, funding streams and late effects data consortiums. Sufficient resources to facilitate growth may be difficult to secure if approached by individual centers rather than via a national, cooperative effort. Improved solutions are urgently needed for transitioning survivors to appropriate care beyond the pediatric age.
儿童癌症幸存者在完成根治性治疗后，仍面临发展为改变生活和/或危及生命的健康状况的风险。然而，澳大利亚和新西兰（澳新）不存在统一的儿童癌症幸存者护理模式。本研究报告了澳新地区目前的儿童癌症幸存者护理情况，突出了儿童癌症幸存者长期随访（LTFU）诊所面临的挑战。
我们对澳新地区三级转诊儿科肿瘤单位的所有11个LTFU诊所的儿科医学主任和临床护士顾问进行了半结构化电话访谈（n = 19；回复率100%）。使用NVivo10对数据进行分析。
参与者一致认为，让大龄幸存者从儿科顺利过渡的选择有限以及资金不足是提供最佳实践LTFU护理的核心挑战。诊所之间存在资源开发重复的情况（例如，生存护理计划模板和诊所系统）。尽管参与者认识到LTFU护理的过度规定性模式可能不可行，但大多数人支持一种可根据当地环境需求进行调整的全国性甚至双边性护理模式。
澳新地区缺乏被认可的最佳儿童癌症幸存者护理模式，阻碍了生存指南、生存护理计划、过渡途径、信息技术解决方案、资金流和迟发效应数据联盟的协同发展。如果由各个中心而非通过全国性的合作努力来解决，可能难以获得足够的资源来促进发展。迫切需要改进解决方案，以便让幸存者在超过儿科年龄后能获得适当的护理。
