Cancer patients need more involvement from their general practitioner (GP) after the diagnosis in hospital, including joint decision-making for treatment. However, planning such a joint process is a major challenge.

This is the result of research from UMC Utrecht. Together with other primary and secondary care providers in the region, UMC Utrecht has made cooperation agreements to provide structured oncology care to improve the counseling of patients with cancer.

For patients it is of great importance to be able to participate in decisions about their treatment. That way it matches their preferences and priorities. Because the number of treatment options is increasing and people are living longer, quality of life is becoming increasingly important. The GP is able to play a supporting role in this decision-making process.

Last September, dr. Ietje Perfors obtained her doctorate for her thesis “Improving primary care involvement in cancer care”.  She pleas for interventions that stimulate more involvement of the GP after a cancer diagnosis. In a randomized controlled trial she investigated, among other things, the GRIP intervention. The GRIP intervention aimed to improve both structured personalized cancer care and the involvement of GPs. Health scientist Eveline Noteboom will receive her doctorate mid-October and investigated the role of the GP and patients in the decision-making for cancer treatment. She did qualitative research into the Time-Out Consult (TOC), part of the GRIP intervention.

GRIP intervention

Previously investigated interventions to improve GP engagement in cancer patients showed that these were often not carried out as planned and that the outcomes for patients were inconclusive. In close cooperation with the Dutch Federation of Cancer Patient Organizations (NFK), UMC Utrecht and regional primary care providers, Ietje developed the GRIP intervention, consisting of two components.

First component is the TOC: this is a consultation with the general practitioner shortly after the diagnosis before treatment decision in hospital. In the TOC, the GP and patient discuss treatment choices extensively so that a weighted choice can be made. The second component consists of structural support during and after treatment by the home care oncology nurse (HON) in collaboration with the GP.

After the treatment choice

Questionnaire research by Ietje and Eveline in collaboration with NFK shows that 82% of patients want the GP to listen to concerns and considerations about the diagnosis, treatment and consequences. Ietje: “Patients are motivated to visit their GP for a TOC, but adequate timing proves to be a challenge. In more than 82% of the cases in the GRIP study, a patient only had a meeting with the GP after the treatment choice had already been made in the hospital. One reason for this is, among other things, the rapid diagnosis in the hospital.

Integrated in care pathway

The conclusions from Eveline's research into the TOC are in line with Ietje's findings. Eveline: “The TOC can strengthen the role of patients in joint decision-making, leading to a more personalized treatment choice. Patients experience and appreciate psychological support from GPs after diagnosis. In the GRIP study, the TOC unfortunately came for many patients too late in the day. In addition, patients did not always experience that there was a choice in treatment. In order to involve the GP in time after the diagnosis and to integrate the TOC into the daily care pathway for patients with cancer, the collaboration between the specialist and the GP must be improved. That is why it is important that the wishes of patients are taken into consideration structurally by the specialist and the general practitioner. In addition, guidelines are needed, in which agreements on responsibilities and communication are secured. ”

Regional transmural agreement

Internist-oncologist Alexander de Graeff was on behalf of UMC Utrecht, involved in establishing a regional transmural agreement for oncological care in the Utrecht region on the initiative of  Trijn. In this agreement, structured cooperation is established concerning primary and secondary care in the treatment and support of patients with cancer. Alexander: “Unfortunately, the effect of a TOC on shared decision-making has not been scientifically proven in the doctoral studies, as in many cases the TOC was only conducted after the treatment choice. However, specialists, general practitioners and oncology nurses in the region are convinced of the usefulness of a TOC. That is why now there is a regional transmural agreement. After a patient is informed about the diagnosis and treatment options or about the proposed change to a treatment by the specialist, it is agreed that the specialist will inform the patient about the TOC at the GP. It goes without saying that we are committed to having this conversation actually taking place before the treatment choice. Sometimes this will not work, because a patient likes to receive a diagnosis quickly and also wants to start treatment quickly. We really must make time for this.”

Need for primary care involvement seems obvious, but the design, evaluation and implementation of new interventions remains challenging. Continuous development of interventions to support primary care involvement in cancer care remains needed.