Blaauwbroek Ria, Tuinier Wemke, Meyboom-de Jong Betty, Kamps Willem A, Postma Aleida
Department of Paediatrics, Division of Paediatric Oncology, University Medical Centre Groningen, University of Groningen, Groningen, Netherlands.
Lancet Oncol. 2008 Mar;9(3):232-8. doi: 10.1016/S1470-2045(08)70034-2. Epub 2008 Feb 20.
Since 75% of children with cancer will become long-term survivors, late effects of treatment are an ever increasing issue for patients. Paediatric oncologists generally agree that cancer survivors should be followed up for the remainder of their lives, but they might not be the most suitable health-care providers to follow up survivors into late adulthood. We designed a 3-year study to assess whether shared-care by paediatric oncologists and family doctors in the long-term follow-up of survivors of childhood cancers is feasible, whether a shared-care model is compatible with collection of data needed for registration of late effects, and how a shared-care model is assessed by survivors and family doctors.
In 2004 and 2005, adult survivors of childhood cancers were randomly chosen from eligible patients diagnosed with childhood cancer (excluding CNS tumours) or Langerhans-cell histiocytosis between January, 1968, and December, 1997, and recalled to the long-term follow-up (LTFU) clinic at the University Medical Centre Groningen, Groningen, Netherlands, where they underwent physical and clinical assessments by an on-site family doctor (visit 1). At this visit, assessments were done according to guidelines of the UK Children's Cancer Study Group Late Effects Group, and late effects were graded by use of Common Terminology Criteria for Adverse Events (version 3). Follow-up assessments were done 1 year later in 2005 and 2006 by local family doctors (visit 2), who were asked to return data to the LTFU clinic. At this visit, the local family doctors were asked to complete a three-item questionnaire and patients were asked to complete a seven-item questionnaire about their satisfaction with the shared-care model. At the next consultation, which was planned for the end of the study (visit 3), the on-site family doctor advised patients about future follow-up on the basis of their individual risk of late effects. Main endpoints were numbers of participants, satisfaction ratings, and proportions of local family doctors who returned data that they obtained at visit 2 to the LTFU clinic.
133 individuals were chosen at random from 210 enrolled adult survivors. 123 of 133 (92%) randomly selected survivors and 115 of 117 (98%) of their family doctors agreed to participate in the share-care programme. 103 of 115 (90%) family doctors returned data to the LTFU clinic at visit 2. 89 of 101 (88%) of survivors were satisfied with this shared-care model, as were 94 of 115 (82%) family doctors; 18 of 115 (16%) family doctors had no views either way; and three of 115 (3%) family doctors were dissatisfied.
Shared-care by paediatric oncologists and family doctors is feasible for long-term follow-up of adult survivors of childhood cancers.
由于75%的癌症患儿将成为长期幸存者，治疗的晚期效应对于患者而言是一个日益突出的问题。儿科肿瘤学家普遍认为癌症幸存者应在其余生接受随访，但他们可能并非对成年晚期幸存者进行随访的最合适的医疗服务提供者。我们开展了一项为期3年的研究，以评估儿科肿瘤学家和家庭医生共同护理儿童癌症幸存者的长期随访是否可行，共同护理模式是否与登记晚期效应所需数据的收集相兼容，以及幸存者和家庭医生如何评估共同护理模式。
2004年和2005年，从1968年1月至1997年12月期间被诊断为儿童癌症（不包括中枢神经系统肿瘤）或朗格汉斯细胞组织细胞增多症的符合条件的患者中随机选择成年期儿童癌症幸存者，并召回荷兰格罗宁根大学医学中心的长期随访（LTFU）诊所，在那里他们接受了现场家庭医生的体格和临床评估（第1次就诊）。在此次就诊时，根据英国儿童癌症研究组晚期效应组的指南进行评估，并使用不良事件通用术语标准（第3版）对晚期效应进行分级。1年后的2005年和2006年，由当地家庭医生进行随访评估（第2次就诊），要求他们将数据返回LTFU诊所。在此次就诊时，要求当地家庭医生填写一份三项问卷，并要求患者填写一份关于他们对共同护理模式满意度的七项问卷。在计划于研究结束时进行的下一次会诊（第3次就诊）中，现场家庭医生根据患者个体的晚期效应风险为其提供未来随访建议。主要终点是参与者数量、满意度评分以及将他们在第2次就诊时获得的数据返回LTFU诊所的当地家庭医生的比例。
从210名登记的成年幸存者中随机选择了133人。133名随机选择的幸存者中有123人（92%）及其117名家庭医生中有115人（98%）同意参与共同护理计划。115名家庭医生中有103人（90%）在第2次就诊时将数据返回LTFU诊所。101名幸存者中有89人（88%）对这种共同护理模式感到满意，115名家庭医生中有94人（82%）也满意；115名家庭医生中有18人（16%）未作评价；115名家庭医生中有3人（3%）不满意。
儿科肿瘤学家和家庭医生共同护理对于成年期儿童癌症幸存者的长期随访是可行的。
