Towards more tailor-made aftercare for breast cancer treatment

Breast cancer patients can, as a result of their treatment, suffer from complaints that affect the quality of their life. A study by Kelly de Ligt (Antoni van Leeuwenhoek) and researchers from IKNL and Nivel maps the extent to which women experience multiple complaints at the same time and what the influence is on their quality of life. This shows that more than a quarter (29%) of women experience a good quality of life, while this is not the case for about one in six women (15%). De Ligt will present these findings during the ESMO Breast Conference from May 5 to 8, 2021. The study results can be used to work towards more tailor-made aftercare for breast cancer patients.

Previous quality of life studies have looked mainly at specific side effects that occur at the end of treatment, but in reality, patients experience multiple symptoms that together affect their quality of life. To identify patient groups in this, the researchers used data from the Dutch Cancer Registry (NKR) and PROFILE. A total of 876 patients were included who were surgically treated for breast cancer (stage I-III). Questionnaires measured the extent to which the women experienced fatigue, nausea, pain, shortness of breath, insomnia, loss of appetite, constipation, diarrhea, emotional and cognitive symptoms. The complaints were compared with a standard population: a group of 1,300 healthy women in the same age category

PSCCR: linking late consequences to breast cancer A number of initiatives are now focusing on improving care for patients with breast cancer, for example within the PSCCR project (Primary Secondary Cancer Care Project). This is a collaboration between IKNL and Nivel and links data from the NKR with NIVEL Care Registrations First Line. By monitoring patients via these databases, the late consequences of breast cancer can be traced, even if a patient has been treated in a hospital and, for example, approached a doctor with complaints.

PROMs: mapping quality of life
Researchers can systematically map complaints and quality of life with Patient-Reported Outcome Measures (PROMs), or patient-reported outcome measures. De Ligt: "These are standardized questionnaires in which patients regularly fill in how they are doing. The results of the questionnaires provide insight into health problems before treatment. PROMS can be used during treatment to adjust care. After the treatment, PROMs provide insight into the effect of a treatment on physical and mental health and functioning. In this way, quality of life is integrated into the patient's care process and (after) care can be offered in a more tailor-made way. These questionnaires are currently being implemented in the Antoni van Leeuwenhoek and many other hospitals.

There are also initiatives around 'joint decision making' during the follow-up audit process. For example, a study is currently being conducted into a decision aid in which women, based on the risk of recurrence, can look at the frequency of follow-up check-ups together with the care provider.

For nursing and medical specialists, paramedics and researchers, the webinar "PROMs, PREMs and wearables" will be organized on May 20, which will discuss research into quality of life. You can register via

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