The treatment of breast cancer has improved enormously in recent years. Of course great news, but many of these women experience health problems following treatment, sometimes for years. NIVEL and the Netherlands Comprehensive Cancer Center (IKNL)/University of Twente conducted a study of the health problems women are experiencing up to 14 years following diagnosis of breast cancer. Based on the findings of this research, they developed the awareness tool ALERT!. Patients and healthcare providers can use this as an aid to assess whether there are any later health effects from the treatment for breast cancer, based on the symptoms the patient is experiencing.
Professor Sabine Siesling, cross-appointed to IKNL and University of Twente in the Health Technology and Services Research group, worked on developing the model. Her research focuses on “outcomes research and personalised cancer care”, to which the tool developed for this project can make a significant contribution. Insight into potential health problems following treatment for breast cancer will give both patients and healthcare providers grip on personalising the aftercare programme.
Problems up to fourteen years following diagnosis of breast cancer
Women who have or have had breast cancer visit their GP’s surgery more often than women of the same age who never had the disease. Health problems range widely, differing by age group and treatment, but one thing that is clear is that women who have or have had breast cancer are more likely to suffer from coughing, infections, fatigue, sleep disorders, osteoporosis and lymphedema. These issues persist up to 14 years following diagnosis of breast cancer.
ALERT!, a tool for patients and healthcare providers
The tool ALERT! was developed in order to support patients and healthcare providers in understanding these complaints. The tool offers immediate grips that allow the user to see whether there is an issue with later effects related to the treatment for breast cancer. The tool’s results can be used to create a more personalised aftercare programme for the patient, which will improve patient care.
Go to ALERT!
Assess the risk of the presence of health effects following breast cancer:
ALERT! - tool for patients
ALERT! - tool for healthcare providers
PSCCR register as data source for research into later effects of breast cancer treatment
Data from the Primary Secondary Cancer Care Registry (PSCCR) was used in developing the tool. The register contains unique information regarding patients who have been treated for cancer by linking the data from the Netherlands (NKR) on tumours and primary treatment with data from NIVEL Healthcare Registrations on the healthcare questions these patients present to their GPs. This method of data coupling can also be used in the future for other types of cancer.
About the research
NIVEL and IKNL developed the Primary Secondary Cancer Care Registry (PSCCR) and the ALERT! tool in partnership. Setting up the PSCCR and creating the tool were funded by a ZonMw grant under the programme ‘Good Use Medication’.
