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There is an increased number of people living with and beyond cancer. It is estimated that there are more than 12 million cancer survivors in Europe. This is due to several factors such as an increased cancer incidence and early detection but also advances in cancer treatment. Patients hope to return to a normal life after treatment but experience several challenges after the acute treatment phase. One of the biggest challenges in oncology is how to organize effective and good care for cancer survivors. Although there is a greater awareness of cancer survivorship and its consequences nowadays, there is still a great variation in the organization of care in Europe. Additionally, survivorship care plans are rare. Quality of care is failing because of poor coordination of and a lack of communication between the healthcare professionals (HCPs). Next to that, the main objective of cancer survivorship care is traditionally the screening and detection of recurrence. However, this focus alone is inadequate since many survivors are confronted with ongoing problems due to the treatment resulting in several unmet needs.

Different models in survivorship care have been described in literature from an interprofessional clinic over one specific HCP in charge (specialist, general practitioner or nurse-led) to a shared model of care. The goals of a survivorship clinic should be to support cancer patients including psychosocial counselling, managing treatment consequences and living with uncertainty. An advanced practice nurse (APN) can be implemented in survivorship care since this nurse has the necessary expertise to coordinate care for survivors while focusing on counselling long-term and late-term effects after treatment.

An example of an interprofessional survivorship clinic is the late effects clinic for patients after rectal cancer treatment in Ghent University hospital. In this care model the screening of recurrence is done by a physician (oncologist, surgeon or radiotherapist) and the late effects are coordinated nurse-led. This clinic has been developed based on research that explored the experiences, needs and perceptions of different stakeholders (patients, informal caregivers and HCPs). Many rectal cancer patients are confronted with several late effects caused by their surgical, radiotherapeutic and/or chemotherapeutic treatment. The majority of patients experience bowel problems (due to low anterior resection syndrome (LARS) or radiotherapeutic treatment) or have to live with a (temporary or permanent) stoma. After treatment patients hoped to pick up their previous life. Our research showed that confrontation with LARS was rather unexpected. Patients and informal caregivers expressed a need for a well-elaborated survivorship care clinic, with a pathway that starts at diagnosis and before treatment. It is key that patients know what to expect after treatment, so giving information and education is essential. A decision aid tool can help to inform patients with a low rectal tumour about their surgical treatment and its consequences. After treatment and when confronted with LARS, patients desired that HCP recognised its severe impact and clarified its expected evolution. Proactive counselling with an easy accessible and approachable HCPs was beneficial. Our research with HCPs also showed that there is little attention for patients confronted with LARS and that there is no standardised approach in how care is organized. They also expressed a need for a well-elaborated care planning before, during and after treatment. An interprofessional late effects clinic for patients with ongoing problems after rectal cancer treatment has been developed, implemented and evaluated in co-creation with patients and informal caregivers. This clinic is coordinated by a clinical nurse specialist (CNS) but in collaboration with other HCPs. All rectal cancer patients are seen by the CNS on fixed and regular timeframes. Referral to other HCPs or an expert by experience is possible when needed.