The patient decides thanks to personalised aftercare

In the PINCOR project, Jako Burgers from Maastricht UMC+ and his colleagues are examining how recovery can best be encouraged with personal aftercare. They are doing this with an integral approach within regional networks. A unique aspect is that they not only examine the medical data, but also social and psychological factors because these equally influence a person's health. In this blog, he tells how they do that.

We make use of the post-COVID Disease Burden Meter to obtain insights into the lingering symptoms following a COVID-19 infection. We have adjusted and revised this based on the nationally available Disease Burden Meter after COVID-19. This gives the GP and the patient insight into the impact of the symptoms and limitations on everyday life, which is indicated with green, orange and red balloons. Attention is not just paid to physical complaints but also to feelings, social relations and work. We use the Disease Burden Meter results to set personal treatment goals for the patient. See the post-COVID Disease Burden Meter here [in Dutch].

In addition, we ask the patient to make an effort too: throughout the study, they keep a digital diary during 6 months. In this, they describe the progress and severity of their symptoms and limitations. We also send questionnaires about subjects such as the degree of functioning, the quality of life, work status and care consumption. We do that at the start of the study and after 3 and 6 months.

Once the patient completes the Disease Burden Meter, we subsequently gain a proper understanding of the symptoms following a COVID-19 infection. Then we can also continue our search for a suitable treatment as aftercare. We have divided the personalised aftercare into four levels that depend on the severity of the patient's symptoms: 1) GP care, 2) GP and monodisciplinary paramedical care, 3) multidisciplinary paramedical care with a case manager, and 4) multidisciplinary specialist rehabilitation care. At each level, we want to include 20 patients for the study. The GP plays a central role in recognising and acknowledging the symptoms and the support they can offer to the patient. The patient's digital diary can also help in this. Together with the patient, the paramedics set specific treatment goals. If several disciplines are involved, a case manager will ensure that the communication between the disciplines and the patients proceeds well.

Finding enough GPs to participate in the focus groups was quite difficult. They are busy providing patient care and are sometimes already participating in other studies. In addition, the GPs are important in the regional network for patient care that is part of the first two levels. More than 30 practices in the region have been approached, mailed and phoned. We do already know that patients are keen to participate, which became apparent from the applications when we recruited patients for the focus groups for the Disease Burden Meter. Through the Lung Foundation Netherlands, we received no less than 300 applications! We also hope that there will be a lot of interest among GP practices to participate in the study.

It is important to emphasise that the patient decides when it comes to the choice of treatment. Together with the GP, the patient determines the treatment goals aimed at better functioning and participation in society. In this study, we provide individualised treatment. We also want to prevent both undertreatment and overtreatment by providing the right treatment at the right moment and the right place. If the treatment has no effect, it will not be continued. In that case, we adjust the treatment and, if needed, scale this up, but always in consultation with the patient. That is more effective and sometimes it even saves costs. We are also examining that in our study, as well as the possible consequences on work status and care consumption. Even if people continue to experience symptoms, we still aim to improve their functioning and ability to participate in society again.

• PINCOR