Shared care by paediatric oncologists and family doctors for long-term follow-up of adult childhood cancer survivors: a pilot study

Abstract

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.