New paradigms in planning cancer rehabilitation and survivorship

Research on the psychosocial aspects of cancer and practice to counteract those effects are no longer addenda to clinical work and research in oncology. The opening up of research into rehabilitation, late effects and the entire concept of survivorship [1] has extended the concept of cancer [2]. Gone are the days when psychological support was claimed to prolong the life of cancer survivors [3]; the claim has little credence, and the data do not support it [4]. Research on survivorship has followed much more productive alleys, leading to studies on co-morbidity, the prevention, detection and treatment of late effects, their timing and the effective elements of rehabilitation for cancer patients [5]. Authorities such as the Institute of Medicine [6] and the National Comprehensive Cancer Network [7] in the USA, the World Cancer Report [8] and numerous other national and international organizations and publications [9] concur that cancer survivors require interventions, not only pharmaceutically and with narrow tumor-oriented treatment, but also treatment of the person experiencing cancer. A person with a spouse has to discover how to restore marital life [10], a cancer survivor may lose her or his job [11], and daily care is needed for the symptoms and other problems that are late effects of cancer treatment [12].

In the European Union, the number of cancer survivors was estimated to be 17.8 million in 2008 [13], and this number is growing. Therefore, public health policies are needed to define and direct services to these survivors, many of whom will become part of the population of long-term survivors. Unlike cancer patients in earlier times, those who survive today may not only have had a cancer but often have one, two and more concurrent chronic diseases, such as diabetes, cardiovascular disease or thyroid dysfunction. Integrated treatment decisions and management structures are required for these more complex cases. The specialization of medical services over the past 50 years benefits patients by ensuring the availability of expertise but tends to leave integration of treatment in a ‘no man's land’. Integration of treatment will be essential in the decades to come, especially with the advent of more targeted, individualized treatment trajectories for each cancer patient. The ‘one size fits all’ approach must give way to assessment and management of individual tumor burden, co-morbidity and perhaps even the patient's own preferences.

These factors call for a shift in our caring culture, to a focus on recovery, coping with late effects and self-management. In principle, a public health system works on the basis that citizens take care of themselves and contact the health system if they recognize symptoms; at that point, citizens expect proper action by the health system. This balance between self-management and rapid health system action in the case of symptoms works for citizens who are healthy and are not chronically ill. For such survivors, including those who survive after treatment for cancer, public health systems have instituted a time-consuming, expensive, labor-intensive follow-up system, the function of which is now being questioned. The aim of this huge follow-up program, which involves millions of encounters between cancer survivors and specialists across Europe, is the detection of recurrence and secondary cancer. Concern has been raised, however, that these large programs are draining too many resources from the core activity of specialized clinicians. Nurse practitioners in several cancer hospitals in the USA are qualified to perform most follow-up activities, including referrals and prescriptions for the management of late effects of cancer treatment, under the supervision of oncologists. This might be one way of solving the problem; however, there should also be a shift toward more self-management by cancer survivors, in accordance with the development of supported self-management for all patients based on the needs of the individual [14]. Follow-up must address the life problems of cancer survivors in terms of physiology, the mind and social interactions.

How can follow-up programs take into account prevention, detection and treatment of late effects, identification of rehabilitation needs and integration of not only the effects of cancer but also the person who may have problems in addition to cancer? The diversity of the population of cancer survivors indicates that more discussion and research are needed on the content and frequency of follow-up and the responsibility for the entire course. Despite decades of research that have shown social differences in all aspects of life, little work has been done on social inequity in interventions for cancer survivors. In view of the number of cancer survivors and changes in demography, more stratified follow-up programs are required. Cancer patients who live alone, have had little education and have at least one comorbid condition are a group for whom frequent, longer follow-up visits and intensive lifestyle interventions would result in better physical and psychological functioning and perhaps return to work than can be expected with a purely clinical approach.

In order to understand and meet the concerns and problems of cancer survivors, we propose consideration of ‘patient-reported outcome measures’ in clinical decision-making. These measures can inform decision-making, as they reflect what patients care about and can be collected rigorously [15,16]. It has been found that the reports of patients and clinicians about symptoms, including toxic effects of cancer treatment, are discrepant yet complementary. Furthermore, patient reporting signals potentially serious adverse events earlier than clinician reporting [17]. Patient-reported outcome measures therefore not only enhance accuracy but may also improve safety. These observations indicate that a model of collaborative reporting is needed, which could focus and direct the attention of both clinicians and patients toward rehabilitation and survivorship in a patient-centered format. Patients are in the best position to report their subjective experiences and clinicians are in the best position to contextualize those symptoms [17].

This issue of Acta Oncologica contains papers from the 10th Acta symposium, the European Cancer Rehabilitation and Survivorship Symposium held in Copenhagen on 17–18 September 2012, which was attended by almost 450 clinicians and researchers, with more than 50 presentations and 75 posters from 16 countries. The symposium was preceded by one day of workshops on six topics, which were attended by more than 125 delegates (on a Sunday!). We selected 27 papers for this issue on the basis of their novelty and scientific content. They highlight issues that are in the throes of development and debate, such as the type and amount of exercise that cancer patients might be offered to improve their outcomes [18–21], whether cancer patients should be screened for psychological distress [22], identifying the need for rehabilitation and perhaps, equally importantly, the preference of cancer patients for rehabilitation [23–29]. One paper even discusses how hospital architecture influences healing [30]. Several studies contribute to the body of evidence on the consequences of cancer treatment, which are not only positive, such as post-traumatic growth [31], faith [32] and behavioral changes [33], but also negative, including late morbidity [34,35], sleep disturbances [36], fatigue [37] and difficulty in returning to work [38,39]. Still other papers address the challenges associated with an ageing population of cancer survivors, who have more comorbid conditions and greater frailty at the outset [40–42]. All these aspects call for comprehensive cancer treatment, rehabilitation and follow-up [43,44], which, if optimal, could accommodate the needs of each and every patient in the growing survivor population.

New paradigms are becoming available to qualify and develop rehabilitation and survivorship plans for cancer patients. The 10th Acta Oncologica symposium served as a platform for fruitful discussions and exchange of ideas. We look forward to the next Acta symposium on rehabilitation, survivorship and late effects, in 2014.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.