Survivorship – the situation room

For decades, psychosocial needs in cancer survivors across all cancer sites have been documented [1,2]. It has been illustrated how the lack of clinically attention to such needs influence quality of life [3], compliance with treatment [4] and survival [5–7].

Documentation of these psychosocial needs is one thing, while changes needed, based on this documentation of the clinical daily work among cancer patients, is a completely different challenge. However, this translational process between science and implementation of clinical practice change depends not only on your findings or level of evidence. It also depends on the area within which you observe an association, even a causal association. If a research team identifies a new chemotherapy, which benefit a certain group of patients, such drug will be implemented as soon as the authorities release the drug for specified conditions. There may be considerations about the price versus the benefit of the drug but each year several costly drugs pass this test and is introduced as an eligible treatment. When it is documented that a psychosocial problem exists, e.g., depression, fear of recurrence or loss of work related to cancer treatment, no authority exist which can enforce the implementation of an evidence-based screening, treatment, or specific follow-up, addressing this problem. Both ASCO and ESMO have guidelines indicating the need for addressing psychosocial issues [8–10], but this is not observed as a mandatory clinical service by most national health systems and oncological societies.

One may ask if this situation arise due to the lack of interventions, which may address such psychosocial problems. However, when reviewing the literature within these areas it becomes clear, that this is far from the case. Treatment of depression in cancer is not a specific treatment and depression in cancer patients may be treated along the guidelines applied in most countries for treatment of depression, in general [8]. Treatment of anxiety in cancer patients, which almost always has a focus on recurrence, has also been developed [11]. Loss of work is a huge social problem and due to national variations in the legislation associated with work and affiliation to the work market during treatment for cancer, one may refer to these national programs specifically aimed at cancer survivors or to the general programs for citizens having difficulties keeping their job due to illness [12,13]. Just to illustrate that when expecting the number of cancer survivors to continue their every-day life, the need for addressing life as a survivor concurrently with the problems arising from medical treatment of cancer, seems legitimate. Assuming that this argument is sound and true one may ask, who has the responsibility for the survivorship interventions?

On the one hand the increase in the number of cancer survivors present an argument for assigning a large part of the follow-up for problems arising in the survivorship phase to the general practice. However, patients express a wish to be seen by the most competent health professional, which in this case often is perceived as the oncologist [14]. Maybe this wish leads to a dead end?

One may speculate, if the constant development of new specialties in the medical profession both mirrors more knowledge and advancement in technology but also the inability to address more comprehensive or multifaceted problems experienced by a citizen when becoming a patient. In the current organization of the health systems, such complex problems, before being addressed must be sliced into pieces that fits into each medical specialty.

Is this always in the interest of the citizen? One may consider this question to which we do not have an answer. In parallel, the involvement of patients in decision making at all stages of the treatment illustrates the dawn of a new shared decision construction in cancer treatment, across all specialties and modalities. How are the medical professionals able to contain these challenges without changing the model of treatment and to a higher degree address the psychosocial problems, late effects, and the change of cancer as an entity into one of several chronic diseases, which needs care in the coming generations of multimorbid citizens?

We raise these questions on the background of presentations at the European Cancer Rehabilitation and Survivorship (ECRS) Acta Oncologica Symposium held in Copenhagen in September 2022. The twenty-one papers selected for publication from the Symposium reflect knowledge gaps and represents ongoing and diverse survivorship research across several countries. Several studies test interventions addressing late effects as neuropathy [15] or bone density [16]; test efforts to diagnose and manage early lymphedema after breast cancer [17] or optimize health before stem cell transplantation in myeloma [18]. However, no long-term effect on survival of a psychoeducational intervention trial in breast cancer was observed [19].

In line with the increasing acknowledgement of the role that patient reported outcomes may play in management of treatment and follow-up care a number of studies report on how self-reported PROs are associated with cancer outcomes, like survival in bladder cancer [20], completion of first-line treatment in lung cancer [21], as well as physical and psychological functioning in the long-term follow-up following breast cancer [22]. All studies illustrating that comprehensive focus on patient resources and symptoms is essential in the planning of cancer treatment. When follow-up programs are changed from calendar-driven to patient-initiated or nurse-led follow-up in breast cancer, social differences are evident in fear of recurrence [23], but not in quality of life [24] and these findings inform the discussion on how best to ensure stratified follow-up to patients at high risk for both relapse and/or late effects.

The natural history of late effects is further elucidated through reports on how treatment for breast cancer affect sexuality in long-term survivors [25], how cardiovascular disease risk is increased after elective colorectal cancer surgery [26] with an impact on quality of life in colorectal cancer survivors [27] and how previous depression is a marker for suicide among prostate cancer survivors [28]. Return to work is a principal issue for cancer survivors of working age, with novel studies on work and education interruption by Hodgkin lymphoma [29], a review of interventions to improve work participation for unemployed or disabled cancer survivors [30] and an implementation study targeted managers to improve return to work after cancer [31]. Health promotion in cancer has not been much reflected at previous ECRS symposia, but a population-based study showed that cancer patients are as successful in quitting smoking as the non-cancer population [32] calling for action in this by many defined as a ‘hard-to-reach’ population, regarding both quality of life and survival. The value of and burden for caregivers in cancer survivorship is much debated and ECRS brought us studies showing that perceived caregiver burden among informal caregivers [33,34], but also that this caregiver burden may be alleviated in the palliative care setting by psychological interventions [35].

All in all, as illustrated by the variety in research topics, cancer patients and survivors face challenges in all areas of life. How do we integrate this knowledge in our definition of which services should be provided at the highly specialized cancer clinic and which would be best addressed in the primary health sector including the general practitioners? This is a decade-long discussion often being a roadblock for further development. We need more trials investigating the division and collaboration between sectors having responsibility for the care of cancer survivors. Hopefully more data will be presented at ECRS in 2024.

Disclosure statement

No potential conflict of interest was reported by the authors.