Follow-up of breast cancer patients after their initial treatment is becoming "devalued and deregulated", according to new research published online in the cancer journal, Annals of Oncology, today (Thursday 24 May). 
Yet, the authors say that if follow-up was well designed, co-ordinated and made better use of community-based teams of doctors and nurses, then health authorities could make large financial savings that could be put towards giving patients better access to new and expensive adjuvant drugs (such as aromatase inhibitors), as well as enabling them to see relevant hospital specialists more quickly. Cancer specialists would gain more time to concentrate on patients with more complex needs, while patients would gain better care and psychological support in their local communities.
Peter Donnelly, the lead author of the study, is a consultant surgeon at Torbay Hospital, UK, and a member of the Breast Cancer Studies Group of the National Cancer Research Institute (NCRI), which initiated the study in conjunction with groups involved in the development of primary care. He said: "While this research looked at what is happening in the UK, its conclusions that good follow-up is important, is more complex than previously thought and requires careful planning and co-ordination between hospitals and community-based healthcare teams, are applicable in many other countries."
The researchers found that only nine percent of cancer specialists discharged patients according to protocols that conformed with guidelines from NICE (the UK's National Institute for Health and Clinical Excellence), the duration of follow-up by the specialists ranged between a year to more than ten years in some cases, and the frequency of mammographies for invasive and non-invasive disease varied between one and three years.
Specialists cited lack of confidence in general practitioners' experience and training in oncology and loss of data on patient outcome as their main concerns about discharging patients into the care of the local doctors and nurses.
The researchers sent a questionnaire to 562 cancer specialists in the UK, asking them about discharging patients and how follow-up was managed in their area, their perception of it and whether it followed any guidelines issued either at local or national level. They received 256 replies (46%) from a broad range of specialists (128 surgeons, 93 clinical oncologists, 32 medical oncologists and three radiologists).
Guidelines issued by NICE in 2002 stipulated that patients normally should be released from routine follow-up after no more than three years and that general practitioners (GPs) should take responsibility for looking after women on long-term treatments such as tamoxifen. The guidelines also said that at the end of primary treatment the specialist and the patient should agree a written care plan, and that there should be evidence-based policies on the frequency of mammographies for patients.
However, the research by Mr Donnelly and his colleagues revealed that:
- although 84% of specialists had a protocol for managing follow-up, only 9% conformed to NICE guidelines;
- only 18% of specialists offered patients a choice of follow-up protocol, of whom only 9% routinely gave patients a written plan;
- for invasive disease, 67% arranged annual mammograms, 9% every 18 months, 18% two-yearly, and 3% three-yearly. For non-invasive disease, the figures were similar (62%, 10%, 19% and 2% respectively);
- average follow-up time was five years, with variations from one year to over ten years. Discharge at three years was arranged most frequently for patients considered to be at low risk;
- metropolitan hospitals tended to provide longer follow-up than district hospitals for patients at high risk from either recurrence or treatment-related problems.
The specialists recognised that reduced clinical workload was the major benefit of discharging their patients to primary care, but had concerns.
Mr Donnelly said: "Specialists felt that changes to the primary care infrastructure would make them more likely to discharge earlier. These changes included increased GP education and training, development of shared protocols and the recruitment of locally based oncology nurses. However, while 84% said that GPs were aware that their patients were being discussed at multi-disciplinary meetings, only 2% actually encouraged GPs to take part in these meetings."
The specialists said the detection of problems related to treatment was the most important reason for follow-up, with the detection of new tumours or metastases, psychological problems and recurrence as the next most important reasons.
Mr Donnelly said: "This study shows that the NICE recommendations that follow-up should be no longer than three years are not considered safe or acceptable by specialists, and that the majority of clinics are in breach of these guidelines by choosing to discharge at five or more years after treatment. It might be better if the guidelines reflected current practice and concerns, particularly the lack of confidence in the community support for breast cancer. There appears to be widespread concern regarding the level of oncology knowledge among GPs, and their ability to develop and use follow-up protocols for high-risk patients. There was little evidence of collaboration between specialists and GPs in shaping discharge plans.
"It is a concern that breast cancer follow-up is becoming so devalued and deregulated that it puts the UK's National Cancer Plan under threat by providing neither the psychological support that patients need, nor the reliable data on which to base treatment plans which ensure low mortality and prolonged disease-free survival. A flexible programme that both encourages patient choice and develops primary care cancer infrastructure is urgently needed. A national audit of follow-up care could ensure that the wide variety of locally agreed models of community-based care actually deliver consistent, high quality care as envisaged by NICE, whilst allowing the savings from reduced hospital visits to be passed on to patients through greater access to novel adjuvant cancer drugs.
"This study shows that deciding when and how to discharge patients is a complex matter and specialists take a number of factors into account; these include the level of perceived risk to the patient from the disease and its treatment, the patient's own preferences (they may feel safer with follow-up by specialists rather than GPs), and the quality of the community-based support available. Follow-up warrants a more refined approach than that recommended by NICE in 2002. More work is needed to develop strategies with primary care that are both patient-focused and satisfy the expectations of all relevant parties."
Notes:  Questioning specialists' attitudes to breast cancer follow-up in primary care. Annals of Oncology. doi:10.1093/annonc/mdm193