Need for change in cancer follow-up

Ingvild Vistad, Line Bjørge, Tone Skeie-Jensen About the authors

The COVID-19 pandemic has given new relevance to the way in which cancer patients are followed up. There are good reasons for making the changes that are now being introduced permanent.

The COVID-19 pandemic has spurred the Norwegian oncological community to establish rules for prioritising the treatment of cancer patients. The doctors must also prioritise those patients who need outpatient follow-up and the procedures for monitoring them. This serves to draw attention to a problem, namely the fact that many patients are monitored for unnecessarily long periods and not necessarily in the right way. In our opinion, we should make use of this crisis to improve our follow-up, so as to spend health resources on the right patients.

More expensive cancer drugs and more cancer survivors are already challenging strained hospital budgets. The follow-up after completed cancer therapy is based on tradition more than on evidence (13). According to a recently published Cochrane review, neither the frequency of check-ups, nor the doctor’s level of specialisation had any effect on cancer survival or the participants’ quality of life (4).

In a review of patient lists, the doctors in our departments have identified many patients who do not need to continue the current follow-up programme

We can use gynaecological cancer as an example. These types of cancer are normally diagnosed at an early stage, and recurrence is rare (5). In cases of more advanced disease, recurrences most often manifest themselves within 2–3 years (6). Despite wide differences in the risk of recurrence and sequelae, most patients are nevertheless followed up for five years or more. Why are we perpetuating this practice? It makes most patients feel safe, and many believe that recurrences are discovered at the routine check-up (7). The fact is, however, that recurrences most often produce symptoms that can occur in the intervals between the check-ups (6). In spite of this, many patients fail to contact their doctor (6, 8). Instead, they wait for the next check-up appointment, which may affect the treatment and thereby also the prognosis (6). For the doctors, this is an established habit and how they have been accustomed to follow up their patients. Moreover, the national guidelines recommend following up cancer patients over many years, irrespective of their prognosis (9).

COVID-19 is forcing us to prioritise

In a review of patient lists, the doctors in our departments have identified many patients who do not need to continue the current follow-up programme – either because they have no real need of further check-ups, or because they can just as easily be monitored by telephone/video consultation. When we contacted patients who could discontinue their check-ups or have their consultations at the local hospital or by telephone/video link, many of them expressed relief at being told that they were cured of their cancer and thus no longer needed follow-up. Others felt good about not having to go to the hospital.

Can we follow up differently?

The COVID-19 pandemic highlights the need to consider alternative ways to follow up cancer patients. Letting patients systematically report any symptoms electronically (electronic patient reported outcomes, ePRO) during and after a completed course of cancer therapy has shown promising results in two randomised studies (8, 10). In one of these studies, which included patients during ongoing chemotherapy, the ePRO group had five months’ longer survival when compared to the control group (10). In the other study, which included patients who had completed their treatment of advanced lung cancer, the ePRO group had 7.6 months longer survival when compared to the control group (8). Instead of routine consultations and CT scans, as in the control group, the ePRO group reported their symptoms on a weekly basis. If the answers indicated a recurrence, they were contacted by the hospital. One consequence of a less intensive follow-up schedule after cancer is that the patients need to take more responsibility for their own health after completion of the therapy. They thus need to be well informed about the likelihood of recurrence as well as of non-recurrence. Furthermore, they need to be informed about any treatment-related late-effects they might expect, and about symptoms that might indicate a recurrence. In addition, a healthy lifestyle may have a bearing on life after cancer therapy.

Less intensive follow-up and placing more responsibility on the patients are approaches currently being tested in the ongoing LETSGO study (Lifestyle and Empowerment Techniques in Survivorship of Gynecologic Oncology, NCT04122235). Ten Norwegian hospitals are participating in the project, which includes giving patients access to the LETSGO app, in which they are requested to answer ten questions about symptoms once per month. Scores above a pre-defined threshold level may indicate a recurrence, and the patient is asked to contact the appropriate hospital department.

Let us learn from today’s situation to set better priorities for the future. It is essential to provide adequate information to the patients, thereby allowing them to take responsibility for their own health and know when to contact the doctor responsible for their treatment. The follow-up must be adapted to the likelihood of a recurrence and late-effects after the therapy. Unnecessary check-ups cause many cancer patients to be anxious about a recurrence that is unlikely to occur. This makes for crowded outpatient lists and greater difficulties in prioritising the right patients for follow-up.

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