Elsevier

The Lancet Oncology

Volume 9, Issue 3, March 2008, Pages 232-238
The Lancet Oncology

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

https://doi.org/10.1016/S1470-2045(08)70034-2Get rights and content

Summary

Background

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.

Methods

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.

Findings

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.

Interpretation

Shared-care by paediatric oncologists and family doctors is feasible for long-term follow-up of adult survivors of childhood cancers.

Introduction

Most children with cancer will become long-term survivors and many of them will be at risk of treatment-related adverse health outcomes. Estimations suggest that physical or psychosocial complications will develop in as many as two-thirds of these survivors. The severity of these complications vary from mild to severe, and might even be life-threatening.1, 2 10% of survivors will die within 20 years of the end of treatment, some because of recurrence of primary disease, and others because of complications of previous treatment.3 To enable survivors to enjoy the best quantity and quality of life, identification and treatment of late effects as early as possible is important.4

For a long time, the discharging of paediatric patients with cancer after a disease-free interval of around 10 years was common practice. Nowadays, paediatric oncologists world-wide believe that a systematic plan for life-long screening and surveillance should be offered to all survivors.5, 6 Much effort is being invested in the development of guidelines for assessment of late effects of cancer treatment, such as the guidelines of the US Children's Oncology Group, the UK Children's Cancer and Leukaemia Group (CCLG), and the Scottish Intercollegiate Guidelines Network (SIGN). Up to now, many adult survivors are not being followed up on a regular basis.7 Of those who participate in follow-up programmes of childhood cancer, more than 90% are followed up by a paediatric oncologist in a paediatric institution.8 However, paediatric oncologists are not the most appropriate health-care workers to care for survivors into late adulthood. Patients who have been treated for cancer might have ongoing complex health needs and many comorbidities that need a range of approaches provided through general practice. In the Netherlands, survivors usually have family doctors, most of whom are willing to participate in a shared-care programme.9 In a shared-care programme, family doctors participate in the screening of late effects in adult survivors of childhood cancers in consultation with paediatric oncologists of the LTFU clinic.

Since the number of survivors of childhood cancers is expected to increase, identifying who should undertake long-term follow-up of such patients after achieving adulthood is important. Hospital-based life-long follow-up for all adult survivors will not only be very expensive, but also difficult to organise because of the ever-increasing population. From an economic point of view, we have to look for alternative follow-up programmes with the lowest burden, not only for survivors, but also for the expanding health-care budgets in many western countries. Family doctors will treat increasingly more of these patients, with a mean of eight or nine patients who survived childhood cancers registered with every family doctor predicted by 2010 (on the basis of a mean of 2350 patients registered for every family doctor).10 If guidelines and ongoing supervision were made available from clinics such as the long-term follow-up (LTFU) at the University Medical Centre Groningen (Groningen, Netherlands), the assessment of late effects could be undertaken by family doctors. If serious late effects, such as cardiac or endocrine complications were detected, survivors could be referred to an appropriate consultant. Involvement of family doctors in shared-care programmes for long-term follow-up would increase their knowledge about the unique needs of survivors of childhood cancers.

To assess shared-care by family doctors and paediatric oncologists in long-term follow-up of survivors of childhood cancers, we designed a 3-year study to assess whether such a model is feasible, whether shared-care is compatible with collection of data needed for registration of late effects, and how a shared-care model can be assessed by survivors and family doctors.

Section snippets

Patients

210 adult (ie, aged 18 years or over) survivors were enrolled into the study. Patients were randomly chosen by use of a computer program and recalled to the LTFU clinic in the first year of the study and were eligible if they had been treated at the paediatric oncology department of the University Medical Centre Groningen (Groningen, Netherlands) at least 5 years previously and were not involved in any childhood cancer follow-up programmes. Patients who were diagnosed with childhood cancer or

Results

Of 210 enrolled adult survivors, 133 individuals were chosen at random and recalled by letter to the LTFU clinic in the first year of the study (visit 1; figure). The participants included eight bone-tumour survivors (osteosarcoma or Ewing sarcoma) who were older than 18 years at diagnosis and who had been treated when chemotherapy for osteogenic sarcoma was given by paediatric oncologists. Ten out of the 133 (8%) invited survivors refused for the following reasons: one patient was severely

Discussion

123 of 133 (92%) invited survivors and 115 of 117 (98%) family doctors agreed to take part in the shared-care programme. Since 89 of 101 (88%) survivors who completed satisfaction questionnaires and 94 of 115 (82%) family doctors were satisfied with the programme, our findings have shown that shared-care by paediatric oncologists and family doctors is feasible for long-term follow-up of adult survivors of childhood cancers.

Collection of long-term follow-up data for registration purposes of late

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