European cancer rehabilitation and survivorship, 2018: one of a kind

In a world of digital solutions to almost every problem and a change in communication from a hand-written letter traveling for weeks over long distances to short messages reaching you within milliseconds – no matter where in the world, the question of whether we should continue to organize scientific meetings to present, discuss and reflect upon science and practice arises. Why not just organize a videoconference and transmit presentations to the remote audiences? When we initiated the European Cancer Rehabilitation and Survivorship meetings almost 10 years ago, we could not foresee the success in terms of participation, eagerness to present and the bibliometric success of the publications emerging from these bi-annual symposia generously sponsored by Acta Oncologica.

In short, during these 10 years, we organized five ECRS symposia and produced 140 papers of which many are among the most downloaded and cited papers published in Acta Oncologica [1–4]. We have had attendees from all over the world, many returning enjoying the spirit and fellowship of the ECRS. This is a remarkable achievement as the field of survivorship in broad terms is quite new. Although the term cancer survivor was introduced back in the 1980s [5], it has not been many years since the term survivorship was launched by clinical societies like IOM and ASCO [6,7] on the background of a population of cancer survivors which today is growing almost exponentially.

Many of these cancer survivors are living complex everyday lives as about 50% of them have one or more additional chronic condition at the time of diagnosis and close to 30% use five or more prescribed medications on a daily basis—data coming from a nationwide and population-based study in Denmark (unpublished data). Not only the cancer disease and the aftermath of treatment require attention and follow-up but also other health problems and conditions. Looking at the population of survivors, they have a higher risk of hospitalization for a broad range of incident somatic diseases after the cancer diagnosis than cancer-free people in comparison, most pronounced in the first years after the cancer diagnosis [8]. In combination, this information points to the need for an ampler model of follow-up considering all diseases affecting an individual, not only the cancer, and thereby moving the care from disease specific to a comprehensive personalized intervention in line with the general idea of personalized genotyped treatment of disease.

The course and risk of late effects in childhood cancer survivors are well described and risk factors identified are all closely related to the specific treatment provided for the cancer disease. In adults, we need more knowledge in order to prevent, detect early and treat late effects, which may have a more systemic character such as depression, fatigue, or pain. Some late effects and symptoms may be a result of surgery like lymphedema, ostomies, and speech problems or an effect of radiation therapy such as chronic diarrhea, cardiovascular effects, or pulmonary changes or chemotherapy like peripheral neuropathies [9]. Numerous late effects may be listed associated with the specific treatment. Probably, these symptoms and diseases require symptomatic treatment. This implies, that we in principle define the post-treatment symptoms as normal symptoms and not specific for cancer patients or cancer treatment. Cancer and its treatment cause other chronic diseases and these diseases must be addressed just as we treat these diseases when they occur in persons not characterized by being cancer patients.

This fifth ECRS symposium had a strong track of late effect researchers presenting data and perspectives in this field of research. The newly establishment of three Danish late effect research units covering separate research themes; general late effects as well as late effects after breast cancer and after pelvic cancer diseases. In a collaboration between these national units, research results may inform the development of guidelines for clinical practice in most common late effects (www.cancer.dk/bedrevidenomsenfoelger [In Danish]).

Likewise, the papers selected for publication from the symposium cover diverse aspects of survivorship research. Research on prehabilitation and optimization of patients to provide better foundations for better survivorship among patients is a fast growing area and is represented by papers on prehabilitation before surgery [10–12]. Also papers address Patient Reported Outcomes (PRO) use and readiness for e-health solutions during therapy and rehabilitation [13–15].

A number of papers describe ongoing efforts to develop and test interventions to improve follow-up care and to prevent development of severe late effects providing us with crucial information on feasibility and patient perspectives [16–19], adherence [20,21], and effects on quality of life [22].

Observational evidence describes physical activity levels and other lifestyle behaviors [23–25] while two papers illustrate the importance of cancer on the family addressing lifestyle in spouses to cancer survivors [26] and on dyadic associations of fear of recurrence among couples affected by cancer [27].

Severe late effects like cardiovascular disease or depression seem to a larger degree to affect prostate cancer patients with short education, even if lifestyle and pre-cancer morbidity is accounted for [28,29]. With social disparities in both referral and attendance to rehabilitation [30] these findings strongly indicate inequality in survivorship. Not all groups of cancer patients benefit equally from advantages in early diagnostics, treatment and follow-up and survivorship care [31].

New knowledge is presented on a number of late effects of cancer treatment, their associated factors, symptom patterns over time as well as consequences on quality of life and work life. Several papers address brain alterations and cognitive dysfunction among cancer survivors [32–34] while aspects of chronic fatigue [35], chronic pain [36], sexual dysfunction [37], diarrhea [38], trajectories of psychological distress [39], quality of life [40–42] and returning to [43], and staying at work [44] constitute the focus in original research and review papers.

In 2016, prehabilitation in cancer patients [45], organization of follow-up [46] but also PRO) were emerging topics [47]. The integration of quality-of-life measurements with PRO seem to address the need for both psychological and somatic subjective reporting from cancer survivors (i.e. 48,49]. Also in 2016, the aspect of being a relative to a cancer survivor became a subject on the research agenda [50]. Bit by bit, the ECRS papers contribute with covering the knowledge gaps enabling us to work towards establishing evidence-based clinical survivorship care.

We already decided that we will once again invite you to Copenhagen 28-29 September 2020, Bon Voyage.

Disclosure statement

No potential conflict of interest was reported by the authors.