Preventing and addressing the late and long-term effects of cancer and its treatment are relatively new ideas in the cancer care model and are reflected in often disconnected systems of cancer care and rehabilitation services both in the United States and in Europe. Because of an aging population and successful treatment, the number of Americans and Europeans living with cancer will increase in the coming years. It must be anticipated that the prevalence of cancer survivorship will continue to grow disproportionately in relation to the number of new cancer cases and deaths. In the United States, there were 13.8 million cancer survivors in 2010 compared with 1.5 million new cases of cancer and 569,000 cancer deaths (Fig. 1, top).[1, 2] It is estimated that the number of cancer survivors in the United States will grow to 18.1 million by 2020. For the European Union population (ie, in the 27 European Union member states), the estimated number of survivors was 17.8 million in 2008 compared with 2.5 million new cases and 1.2 million deaths (Fig. 1, bottom).[3, 4] More than half of European cancer patients diagnosed with 1 of the common forms of cancers today will be alive after 5 years. A recent United Kingdom study estimated that up to 10% of their estimated 2 million cancer survivors will be in the “rehabilitation phase,” defined as in the second year after diagnosis and without recurrence. The needs of survivors will vary in type, intensity, and duration; thus, the need for planning services that prevent or mitigate the effects of late sequelae effectively and efficiently will be of increasing importance as demand grows over time.
In this article, we highlight some of the differences between American and European approaches to the rehabilitation of cancer survivors. The ultimate goal of this report is to provide a snapshot of the large-scale work already done in European and US cancer rehabilitation. We hope that increasing awareness of the important gains made to date and identifying barriers to continued progress will encourage collaboration between clinicians in different countries and will help foster the continued growth and development of this emerging but critically important field.
Despite the common objectives of various European countries regarding the goals of rehabilitation, rehabilitation concepts differ considerably between nations. Europe is a continent composed of countries with vastly varied geopolitical and economic systems that have very different health care policies and practices. Thus, it is impossible to provide a whole systemic European perspective. Instead, in this overview, we refer to specific European countries to illustrate key points. Many European countries have included cancer rehabilitation in their national cancer plans, and some have developed or are working on evidence-based recommendations (ie, Finland, Holland, United Kingdom), but differences remain regarding the provision, accessibility, and funding of rehabilitation services. Important principles of most rehabilitation programs are a biopsychosocial understanding of illness and disability, the importance of early rehabilitation measures, the continuity of rehabilitative treatment, and a tailored rehabilitation plan. In some European countries, cancer rehabilitation is mainly provided by the primary health care sector (eg Denmark); although, in most countries, such as Sweden, Holland, and Norway, services are provided by both primary and secondary sectors and are supplemented by private initiatives. In Germany, the historic tradition for rehabilitation as a systematic process (Table 1) is primarily funded by the pension insurance funds.
|Variable||Breast (During)||Breast (After)||Prostate||Hematologic (During or After HSCT)||Hematologic (No HSCT)|
|Lymphedema||A (is safe)|
Both organization and coverage differ between nations, ranging from high coverage in some countries to virtually nonexistent systematic cancer rehabilitation services in others. Researchers, clinicians, and policy officials concerned with cancer rehabilitation from the various European countries came together under the auspices of the European Commission to develop a set of common cancer rehabilitation indicators (the European Cancer Center Health Indicator Project [EUROCHIP]). This was part of a broader European Union agenda to conceptualize care at the European level as opposed to the individual country level.
Challenges arose for this task because of various definitions of cancer rehabilitation (both within and between countries), the availability of national cancer rehabilitation guidelines and action plans, and the availability of data to determine the status of cancer rehabilitation within each country. Despite these challenges, a consensus was reached about a common set of cancer rehabilitation indicators.
The indicators of cancer rehabilitation developed in the EUROCHIP project include: 1) 2-year and 5-year cancer prevalence by age, sex, and cancer type; 2) quality of life of individuals living with cancer using a common instrument for all countries so that direct comparisons can be made (for example, European Organization for Research and Treatment of Cancer [EORTC] questionnaires); 3) the number of cancer survivors returning to work; and 4) the number of consultations with an allied health professional (eg speech therapist, dietician, physiotherapist, clinical psychologist). Whether and how countries will implement these recommendations is unclear, although the goal of developing a European perspective on cancer rehabilitation remains.
Evaluating the Effectiveness of Rehabilitation Interventions: Is Country of Origin Important?
Since 2000, several European health departments have commissioned systematic reviews regarding the effectiveness of interventions to aid in the recovery of cancer patients. This demonstrates the importance placed on addressing the rehabilitation needs of individuals affected by cancer by the European health community.[8, 9] These reviews included interventions that are irrespective of country of origin, suggesting that country was not considered relevant by the reviewers when assessing the effectiveness of interventions for cancer patients. Thus, an implicit assumption is being made when examining evidence regarding the effectiveness of interventions—that cancer patients have common disease characteristics that render an intervention being tested in Cleveland, Ohio just as relevant for cancer patients in Copenhagen, Denmark. Moreover, reviewers in different countries, because they were drawing on the international evidence base, reached similar conclusions. Among these were the lack of evidence to determine the optimal time in the patient pathway to provide rehabilitation and the optimal duration and intensity of certain rehabilitation activities.
An overview of cancer rehabilitation in the Nordic countries, the Netherlands, and Germany cites several research studies evaluating the impact of ongoing rehabilitation programs. The evidence across these countries on the impact of rehabilitation on quality of life, physical functioning, anxiety, and depression and change in health behaviors indicates that the results are mixed. There is a need to identify those components of rehabilitation that will benefit cancer patients most. There is also a lack of data on the long-term impact of rehabilitation efforts.
Although several European countries draw on international evidence for decision-making regarding the effectiveness of rehabilitation interventions, they recognize the importance of evaluating their rehabilitation programs at the national and local levels. This presents an opportunity for a European and international database of rehabilitation interventions that can be disseminated in Europe and elsewhere. Although it is important to draw on international evidence, the challenge is to translate and transfer interventions that are successful for individual countries, at the local level, and even in smaller subdivisions when necessary.
Future Areas of Research in Europe
Like in all interventions within the health care system, rehabilitation efforts should be based on evidence. Acknowledging that this area of research is a relatively new field, all levels of analytical evidence are needed, including observational, experimental, and qualitative research, to disentangle the complicated challenges of how, when, and which rehabilitation to offer.[10-12] One research priority should be large-scale, prospective European cohorts that sufficiently describe the needs of survivors through the trajectory of disease, from the point of diagnosis to long-term survivorship, to inform the development of timely rehabilitation or preventative efforts. Such population-based follow-up studies can provide us with information on disease characteristics, treatments, the presence of comorbidities, social support, and socioeconomic status to identify and characterize vulnerable groups at higher risk of developing needs that should be addressed. Important knowledge can be obtained from such longitudinal studies about resilience and growth factors and about the complex interactions between the experience of limitations, needs, and the desire for help.
The building of ambitious, long-term, pan-European follow-up cohort studies has been successfully carried out in other fields of cancer research, such as the (European Prospective Investigation into Cancer and Nutrition (EPIC) study, which included more than 500,000 Europeans and provided knowledge on dietary risk factors for cancer, or the European Cancer Registry-Based Study on Survival and Care of Patients (EUROCARE) studies, which aim to follow survival trends among cancer patients in Europe over time and to detect changes across regions.[13, 14] Establishing such European survivor cohorts would provide us with knowledge regarding the origins and evolution of cancer-related impairments to function and quality of life among cancer survivor populations. Evidence from such efforts would point toward ways to increase standards of cancer rehabilitation across Europe by elucidating differences and similarities in outcomes for European cancer patients across nations and diseases.
Comprehensive rehabilitation programs are perhaps most important from the patients' perspective, because they can obtain rehabilitation tailored to their specific needs. However, when testing the effects of rehabilitation efforts, priority must be given to a description of each intervention component to create better rehabilitation initiatives. Comprehensive programs must be rigorously described in terms of aims (prevent or alleviate), target group (disease and patient characteristics), timing (during or after treatment), component (physical training, speech therapy, delivering specialist, intensity, duration, context), and outcomes (baseline, standardized measurements and evaluations, generic or disease/treatment-specific measures). In addition, experimental testing of rehabilitation programs should include evaluation of patient perspectives, investigating the association between expectations, motivation, and needs on subsequent outcomes.
These programs should be tested in sufficiently powered studies applying long-term follow-up. In countries like Germany, legislation hinders randomization of interventions in rehabilitation, but quasiexperimental evidence has been obtained from several outcome and process studies in cancer rehabilitation with very high numbers of patients.[2, 15] In many European countries, rehabilitation is not fully integrated into the standard medical care of all cancer patients, and it is possible that we reach only segments of the population (ie, the middle class). We need to know more regarding what motivates different groups of patients to address the question of whether the content of rehabilitation interventions should be reconsidered as well as the format and setting (peer vs professional, group vs individual). In a setting of rehabilitation services in which standards may vary not only between nations but also within nations because the fragmentation of services across health sectors influences accessibility and navigation or because health insurance coverage differs from region to region, 1 of the tasks for future research should be information on the optimal organization of efforts.
When the highest methodological standards are applied, we ensure that replicable interventions have been identified that are transferable across settings, both nationally and/or internationally. By doing this, we will add to the evidence base and ensure that all cancer patients participating in our studies will contribute to better rehabilitation in the future.
The American Perspective: State of the Art
Meeting the challenges of the millions of cancer survivors in the United States will require overcoming a variety of barriers. Many more specialized providers will need training, including cancer rehabilitation physicians and physical and occupational therapists with specialized training other than lymphedema management certification. In addition, oncology and primary care providers will need to be educated about the benefits of cancer rehabilitation services, particularly the indications for referral to cancer rehabilitation services.
Cancer rehabilitation programs should be equipped to contend not only with the complications of cancer and its treatment but also with the medical and degenerative comorbidities that are common in the general population, because these complicate the restoration of function and quality of life in cancer survivors. Ideally, a comprehensive program would include a fellowship-trained cancer rehabilitation physician as well as physical and occupational therapists with experience in the functional restoration of cancer patients. Of the approximately 8300 board-certified physiatrists in the United States, only a small number practice in cancer rehabilitation centers, and there are only 2 fellowship training programs in cancer rehabilitation (Memorial Sloan-Kettering Cancer Center, New York, NY and The University of Texas M. D. Anderson Cancer Center, Houston, Tex), making the paradigm of a comprehensive cancer rehabilitation program difficult to achieve in the short run, because each of these programs has only 2 fellowship positions.
The reasons why there are so few cancer rehabilitation fellowship training programs are unclear but likely are similar to the reasons why there are so few comprehensive cancer rehabilitation programs. Specific reasons include difficulty clearly defining the role for cancer rehabilitation as a specialty devoted to the functional restoration of cancer patients and survivors at all stages of the cancer experience, from primary treatment though palliative care, with emphasis on the growing and specialized needs of the survivor. All too often, cancer rehabilitation is thought of or acts as a lymphedema and/or fatigue treatment service and, as such, garners little respect at the institution in which it operates. Similarly, convincing hospital administrations to develop a comprehensive cancer rehabilitation program in a climate of ever increasing financial pressure, at best, is difficult. Emphasis on the clear benefit the patient care and also the bottom line in a properly administered program, not only through direct revenue but also by decompressing the oncology staff so that they can be more efficient and less burdened, should help overcome this obstacle. Finally, the difficulty of developing and/or recruiting staff with the specialized skill sets to create a program in cancer rehabilitation is a daunting barrier for many centers. This obstacle is best overcome by striving to reach a critical mass of comprehensive cancer rehabilitation programs that can serve as a foundation on which to develop cancer rehabilitation fellowships and thereby create the a steady supply of well trained cancer rehabilitation physicians.
Many American institutions are now interested in developing a cancer rehabilitation program to qualify for the American College of Surgeons Commission on Cancer (COC) Accreditation Program. For many institutions, obtaining COC accreditation is not just about ensuring quality of care but about setting themselves apart from other cancer centers and practices in a competitive and lucrative market. It is noteworthy that the COC does not set minimal standards of accreditation or provide guidance regarding what constitutes a cancer rehabilitation program. The COC program standards only stipulate that the institution should have a policy or procedure in place that provides patients with access to rehabilitation services either on site or by referral. Regardless of the reasons, requiring rehabilitation as a component of a desired certification—even if its quality has yet to be assured—is a positive development for cancer survivors. The next challenge will be to ensure the quality of rehabilitation and determine the components that are required for it to be comprehensive in an atmosphere in which the inclination of some centers may be to set the bar as low as possible.
Intervention Studies/Intervention Programs in the United States: Evidence and Examples
One area of cancer rehabilitation with deep evidence for efficacy is an exercise program after a cancer diagnosis. There have been multiple systematic reviews and a set of guidelines published on this topic from the American College of Sports Medicine.[19-21] Dozens of randomized controlled exercise trials have demonstrated a variety of benefits for survivors of breast, prostate, and hematologic cancers, including reduction of fatigue, physical function, quality of life, and body composition. There is considerably less research regarding the safety and efficacy of exercise for colorectal and gynecologic cancer survivors, although these are among the more common diagnoses of long-term cancer survivors.
Existing Cancer Rehabilitation Programming in the United States
Comprehensive cancer rehabilitation programs are the exception rather than the rule in the United States. The vast majority of National Cancer Institute-designated cancer centers do not have comprehensive cancer rehabilitation programs. Freestanding cancer wellness centers and commercial or not-for-profit rehabilitative exercise programming are common across multiple urban and some suburban settings but are rare in rural settings.
There are clear pathways for rehabilitation interventions, including inpatient admission for most patients with functional decline because of injury, neurologic, degenerative, and many other function-altering disorders. However, if a decline in functional status caused by the effects of cancer or its treatment, then the likelihood of referral for rehabilitation is significantly reduced. There is evidence that patients with metastatic breast cancer in the United States who have difficulty ambulating may not be referred for rehabilitation services. Centers of excellence do exist at a small number of institutions, including The University of Texas M. D. Anderson Cancer Center, Memorial Sloan-Kettering Cancer Center, the Rehabilitation Institute of Chicago (Chicago, Ill, and the Mayo Clinic (Rochester, Minn). Each of these programs varies in their offerings with respect to inpatient and outpatient services, interventions offered by rehabilitation medicine, and the overall focus of rehabilitation medicine. Exemplary freestanding cancer wellness or rehabilitative exercise programs also are burgeoning across the United States. Wellness programs vary widely with regard to cost, quality, and efficacy, and none are currently covered by third-party payers.
Future Areas of Research in the United States
The aforementioned lack of empirical support continues to impede the clinical integration of rehabilitation services into comprehensive cancer care in the United States.[24, 25] A recognition that coordinated research efforts are essential to establish a robust framework that can support future investigation has spurred US cancer rehabilitation researchers to establish shared initiatives. Some of the most compelling and clinically pertinent are outlined here.
Function, activity, and participation measures are needed across the broad performance range characteristic of patients with cancer. Currently, 3 approaches are being closely evaluated: 1) activity monitors, 2) item response theory (IRT)-based assessment, and 3) objective performance measures and batteries. Activity monitors produce large amounts of objective data at relatively low cost. However, a lack of validated algorithms that can convert their copious output into standardized and relevant information for clinicians, researchers, and end users remains problematic. Consequently, modeling techniques to meaningfully classify physical activities both qualitatively and quantitatively are an area of intense research effort.
IRT-based assessment tools, such as the Patient Reported Medical Information System (PROMIS)[28, 29] and the Ambulatory Post Acute Care Computer Adaptive Test (APC) and short forms, may offer the potential to precisely discriminate across a broad range of functional abilities with minimal respondent burden. IRT methodologies have been extensively delineated elsewhere. The enthusiasm for IRT-based measurement lies in part in its capacity to create study-specific or population-specific short forms and computer-adaptive tests that, despite the inclusion of different items, yield comparable scores. To date, efforts have focused on creating item banks rather than examining their validity and responsiveness among patients with cancer. However, the APC has demonstrated responsiveness comparable to that of much longer, fixed-length instruments in both a general outpatient population and in patients with late-stage lung cancer.[33, 34]
Objective performance measures and batteries have matured to the point that they are widely integrated into observational databases, clinical practice, and research studies. Their capacity to predict important clinical outcomes is accepted. From this foundation, interest has shifted toward examining whether their use can inform medical decision-making to improve outcomes. Attention has focused on geriatric cancer patients, who enter treatment with greater functional morbidity and who are more likely to develop treatment-related toxicities. The use of performance batteries, such as the Short Physical Performance Battery (SPPB), may provide an objective basis to stratify patients according to risk, gauge their need for reduced treatment intensity, and proactively involve rehabilitation services.
Care delivery strategies
Recognition of a need for more efficient, outcome-based, and patient-centric care delivery has intensified a re-evaluation of comprehensive cancer care. In the United States, the glacial clinical integration of cancer rehabilitation offers a current advantage, in that novel strategies can be implemented without a need to dismantle established infrastructure. However, it is problematic that scant data are available to guide the pragmatic integration of theoretically promising approaches, such as the Prospective Surveillance Model for breast cancer survivors or the pre-emptive delivery of rehabilitation services to patients with late-stage cancer who are at high risk of becoming disabled. Clinical trials are underway to determine whether treatments that have been established as effective in other populations can benefit patients with cancer.
Characterizing disablement trajectories and rehabilitation needs
In an era of shrinking medical resources, identifying the patients for whom cancer rehabilitation services provide greatest benefit is appropriately becoming a research focus. The heterogeneity of patients with cancer at diagnosis is matched by the dramatic functional transformations that many undergo as they progress through treatment toward advanced disease or long-term survivorship. To date, the characteristics of patients who may or may not become disabled are poorly understood. Patient centricity and cost sensitivity are useful factors for determining whether patients should undergo screening for physical impairments or should automatically receive therapy services.
Examining cancer-related and cancer treatment-related threats to functionality
The relation between physical impairment and disability among cancer patients lacks the direct linearity suggested by many disablement paradigms. This is not surprising in light of the intense variation in the psychological, symptom, and social dimensions of the cancer experience that catalyze the progression of relatively benign impairments to frank disability.[40, 42] Examination of the inevitably complex and nuanced relations between patients' demographics, cancers, treatment exposures, physical impairments, and disabilities has been limited. In addition, the mechanisms by which cancer and cancer treatments produce physical impairments in some patients, and not in others, are a growing research interest, particularly with respect to whether these mechanisms may be amenable to therapeutic intervention.
Many Differences but More Similarities in the Challenges of Developing Comprehensive Cancer Programs in Europe and the United States
Curative cancer care is the primary objective of medical practice in both the United States and Europe, as evidenced by the US-based National Comprehensive Cancer Network (NCCN) and European Society for Medical Oncology (ESMO) guidelines for breast cancer treatments.[43, 44] Patients and survivors should expect a similar primary objective from their rehabilitative care, that is, the restoration of their pretreatment level of function and quality of life. Just as we are not always able to deliver a cure to patients with cancer, we are not always able to successfully meet the goals of rehabilitation. There is considerable room for growth in our evidence base to guide the principles and practice of cancer rehabilitation in both the clinical realm and the academic realm.
Research, by its nature, is reductionist, whereas clinical practice is holistic. Research on cancer rehabilitation will focus on interventions for specific impairments in a specific tumor site at a specific time point along the time course after cancer. By contrast, the clinical practice of cancer rehabilitation will perceive the patient as a whole person for whom cancer mat be 1 of multiple health challenges. Rehabilitation interventions need to be comprehensive, addressing multiple impairments simultaneously or in succession, with various levels of patient education, supervision, and ongoing surveillance for improvement or decrement in function from the time of diagnosis throughout the patients' lives. The challenge of piecing together a coherent, holistic clinical practice from largely reductionist research findings is hardly unique to cancer rehabilitation. However, we acknowledge that it creates a natural tension between the evidence base supporting cancer rehabilitation versus the clinical practice of cancer rehabilitation. The research evidence supporting the efficacy of cancer rehabilitation interventions for adverse treatment effects, as noted above, will not differ between the United States and Europe.
Defining the levels of care required by cancer survivors and designing appropriate services and programs to accommodate them should be a priority irrespective of country. Although some patients may have no discernible impairments (ie, resection of a malignant thyroid nodule), others can be stratified has having mild, moderate, or severe impairments. The effects of cancer treatments can vary widely. For instance, the same dose of a neurotoxic chemotherapeutic agent can leave 1 patient with little or no chemotherapy-induced neuropathy and can leave another patient severely impaired. Similar disparities can be observed in patients treated with radiation who suffer from radiation fibrosis syndrome. The chemotherapy-induced neuropathy observed with taxanes may improve significantly in the majority of patients, whereas the neuropathy resulting from platinum analogues tends to be more durable and may last for the life of the patient. In the case of patients who have radiation fibrosis syndrome, their symptoms may not manifest for months or years after treatment and will progress for the rest of their lives.
The ideal comprehensive cancer rehabilitation program should include a specialized cancer rehabilitation physician with skill and expertise in the evolution and treatment of a wide variety of neuromuscular, musculoskeletal, pain, and functional disorders common to cancer patients and survivors. The program would serve both inpatients and outpatients and would be supported by highly trained physical, occupational, and lymphedema therapists dedicated to treating the unique needs of the cancer population. Clinicians, including not only the primary oncologist, oncologic surgeon, and radiation oncologist but also a variety of specialties, such as medical survivorship, psychology, psychiatry, social work, speech, and swallowing, and medical subspecialties, such as cardiology and endocrinology, among others, need to be readily accessible for consultation and collaboration. By having access to a wide variety of allied clinicians, rehabilitation medicine physicians not only would be able to address functional issues, which are their primary focus and expertise, but also would be able to ensure that other domains, such as the patients' psychological and social well being, are being addressed.
An increase in the number of cancer survivors in Europe and the United States has led to progressive interest in robust and effective cancer rehabilitation services to help restore function and quality of life to individuals affected not only by direct effects of cancer but also by surgery, chemotherapy, radiation, and other treatments important in effecting cure or prolonged survival. The field of cancer rehabilitation is still very much in development in both Europe and the United States. Basic questions concerning what constitutes a state-of-the-art cancer rehabilitation program, where such programs should reside, how to train clinicians, and which skill sets are critical have yet to be answered. Similarly, which programs are most successful and how to measure success are subjects of debate. The configuration of cancer rehabilitation programs and access to those services varies widely across Europe and the United States, reflecting different funding systems and widening health inequalities. Narrowing not only our knowledge gap but also this socioeconomic chasm will be a major but critical challenge for rehabilitation professionals going forward.