Intended as a complement to the International Classification of Diseases (ICD), the ICF provides an extensive set of categories by which a person’s functional impairments, activity restrictions, and limitations deriving from a health condition may be described in detail with additional reference to contextual factors. To be clinically useful, however, subsets of this extensive list have to be built which refer to specific health conditions and represent so-called ICF core sets. In the field of cancer, core sets for breast as well as for head and neck cancer have been developed and are currently undergoing validation (Becker et al. 2010; Brach et al. 2004; Glaessel et al. 2011; Leib et al. 2012; Tschiesner et al. 2009, 2010). This research lends support to the content validity of the respective core set categories on the one hand, but on the other also identifies the need for further amendments. Thus, there still is a need for additional development and further validation. Although the general perspective provided by ICF has been positively evaluated so far, it remains to be seen, then, whether core sets covering impairments and limitations associated with other tumor diagnoses will emerge. Furthermore, reservations concerning the applicability and practicability of ICF categories in the field of cancer rehabilitation (e.g., Bornbaum et al. 2013) will have to be resolved.
3 Structure of Rehabilitation Care
Considering the continuum of cancer care, cancer rehabilitation has its place at the interface of acute and follow-up or after-care. How rehabilitation services are delivered varies greatly from country to country as a function of the social security system into which they are embedded. In most European countries and in the United States of America rehabilitation services are mostly based in out-patient settings, whereas in Germany one finds a unique system in which rehabilitation services are provided predominantly through in-patient settings although out-patient rehabilitation services have partially gained importance there in recent years, too.
Hellbom et al. (2011) recently have provided a brief overview of the structures of cancer rehabilitation and the state of rehabilitation research in Nordic and European countries. As they point out, cancer rehabilitation ranges from primarily out-patient programs as in Sweden, Norway, and the Netherlands over 1-week courses as in Finland, Denmark, Iceland and, again, Sweden and Norway to (predominantly in-patient) 3-week programs in Germany (for Germany see also Koch and Morfeld 2004; Koch et al. 2000; Koch and Weis 1992).
One of many interesting characteristics of the German rehabilitation system is that rehabilitation costs are primarily covered by the German statutory pension insurance scheme or the patient’s health insurance–depending on whether or not the patient still is in the labor force. Different from patients with other health conditions, however, cancer patients in Germany generally are entitled to apply for rehabilitation measures. Rehabilitation of cancer patients not yet retired is guided by the aim of restoring their earning capacity (as a prerequisite of social participation) which is well captured by the official slogan “rehabilitation rather then pension”. Another specific feature of rehabilitation in Germany is a special form of rehabilitation that is termed “post-acute rehabilitation.” This refers formally to rehabilitation services that are about to begin not later than 2 weeks after discharge from the acute-care hospital. This type of rehabilitation measures represented about 35 % of all rehabilitation measures in 2011 (Deutsche Rentenversicherung Bund 2012b).
In 2011, the German statutory pension insurance scheme provided a total of 163,466 in- and out-patient cancer rehabilitation measures (Deutsche Rentenversicherung Bund 2012b). These represent 18 % of all its rehabilitation measures for adults in that year. 84 % of all rehabilitation measures in 2011 were in-patient measures and 13 % were out-patient measures (both for adults). The latter represents an increase of 7 % points over 16 years. This mainly reflects the efforts that have been taken during that time in order to develop out-patient services in Germany, too, in order to tailor services more specifically to the needs of some subgroups of the patient population. However, with respect to the total of in-patient rehabilitation measures provided in 2011 in approximately 120 oncologic rehabilitation clinics the proportions of women and men amounted to 21 and 16 %, respectively, while the proportion of patients with cancer in regard to the total of out-patient rehabilitation measures amounted to only 2 % in both women and men.
In the United States of America, the form of delivering cancer rehabilitation has undergone some notable changes during the past decades according to observations by Alfano et al. (2012). These authors note a shift in rehabilitation service delivery away from tertiary cancer centers to community centers coupled with a fragmentation of cancer care in community settings. In combination, these trends limit the potential of cancer rehabilitation. In order to improve this unsatisfactory situation Alfano et al. (2012) suggest to revitalize the link between primary treatment and rehabilitation services and also to consider the possibility to integrate some elements of the European forms of rehabilitation into the US system of health care. It remains to be seen how this will translate into practice. Nevertheless, these recommendations fit well with initiatives of the Institute of Medicine to establish the concept of a cancer survivorship plan that describes the tasks for survivorship care of any individual patient (Oeffinger and McCabe 2006; Salz et al. 2012; Stout et al. 2012).
So far, this section should have made clear that the structure of delivering cancer rehabilitation not only varies widely across countries, but also is undergoing dynamic processes of change in response to changes in medical care and society in general. Despite the marked variation in the delivery of cancer rehabilitation services across different countries, however, there appears to be a general consensus that cancer rehabilitation is a multidisciplinary task (for details see Sect. 7).
4 Rehabilitation Needs and Assessment
Physical and psychosocial sequelae of cancer and its treatment differ widely between patients and the stages of the cancer trajectory. Problems during the initial phase immediately after treatment are different from those that may arise in later phases, e.g., after a recurrence or at the end of life (Gerber 2001). More specifically, the spectrum of sequelae may include fear of recurrence, anxiety, depression, cognitive dysfunction, fatigue, pain syndromes, peripheral neuropathy, sexual dysfunction, problems with body image, balance and gait problems, various mobility issues, lymphedema, problems with bladder and bowel functioning, stoma care, problems with swallowing, and speech and communication difficulties (Alfano et al. 2012; Fialka-Moser et al. 2003; Stubblefield and O’Dell 2009). Given this broad range of potential impairments in combination with the wide variability between patients, each cancer patient requesting rehabilitation has to be assessed individually with respect to his/her rehabilitation needs (Gamble et al. 2011; Ruppert et al. 2010). This assessment will take place routinely at admission in terms of a medical examination and interview. It may be complemented by a short psychological assessment by a psychologist or on the basis of a routine distress screening procedure. Determining a patient’s rehabilitation needs could be improved using standardized instruments designed to measure quality of life. These may be either generic or may focus on the specific problems and distress of cancer patients. Aside from assisting in the assessment of rehabilitation needs before or at admission, these instruments may be used efficiently in evaluating the effects of rehabilitation programs at discharge or follow-up examinations as well. Schag et al. (1991) and Ganz et al. (1992) were among the first to develop a comprehensive instrument for assessing rehabilitation needs in cancer patients. Overviews of more recent instruments may be obtained from a variety of sources (e.g., Mpofu and Oakland 2010). Bengel et al. (2008) have provided an update of instruments available to assessments in rehabilitation in Germany, covering internationally established ones for which a validated German version exists as well as instruments available only in German. Table 1 illustrates some of the more frequently used instruments that are generally available to assessments in cancer rehabilitation settings.
Table 1
Illustrative selection of instruments and domains available to assessment in cancer rehabilitation
Domain | Instruments |
---|---|
Quality of life | Cancer specific: EORTC QLQ-C30, FACIT, Generic: NHP, SF-36 |
Health-related cognitions | IPQ-R, MHLC, SOC |
Coping with cancer | CBI, COPE, FKV*, TSK*, WoCL |
Social support | ISSS, SSUK* |
Pain | MPI, PDI |
Distress/co-morbidity | BDI-II, BSI, DT, GHQ, HADS |
5 Goals and Interventions
Given the multifaceted impairments and sequelae due to cancer and its treatment, cancer rehabilitation usually addresses a variety of goals. On a general level, cancer rehabilitation aims at restoring the patient’s physical, emotional, social, role, and cognitive functioning as well as independence. This may also include re-integration into work life. Besides helping the patient regain functional autonomy, preventing further impairment of functioning may frequently represent another important task for rehabilitation of cancer patients. Following a suggestion by Bergelt and Koch (2002) rehabilitation goals may be classified as biomedical/treatment-related, psychosocial, educational, or vocational. Table 2 presents an illustrative list of rehabilitation goals covering these categories.
Table 2
Types of intervention goals in cancer rehabilitation (slightly modified after Bergelt and Koch 2002)
Biomedical/treatment-related goals |
---|
To continue therapies as recommended after primary treatment |
To identify and treat sequelae of cancer and its treatment (e.g., pain, fatigue, lack of endurance, peripheral neuropathy, sleep disorders) |
To improve physical condition and performance status focusing on strength, endurance, and mobility |
Psychosocial goals |
To support the process of coping with the disease and the accompanying physical changes |
To restore and improve social, emotional, and cognitive functioning |
To enhance self help strategies, competencies and resources for disease management |
To facilitate adaptation to irreversible limitations and help the patient develop compensatory skills and abilities |
To help the patient stabilize with respect to his/her personal, familial, social, and vocational situation |
Educational goals |
To provide information on cancer, its treatment, and forms of psychosocial support |
To provide information on risk factors and to initiate modification in health-related behaviors like dietary habits, exercise, smoking, or alcohol consumption |
Vocational goals |
To help the patient achieve vocational re-integration, resume previous occupation, or retrain in order to attain a position appropriate under given circumstances |
Specifying rehabilitation goals for the individual patient will take his/her individual needs into account as well as the results of all other assessments. In addition, the goals to be specified should be attainable within a reasonable amount of time. Based on this principle and the respective assessments an individual rehabilitation plan will be developed in close cooperation with the patient. Also, patients and–wherever possible and indicated–their family will be encouraged to actively participate as partners in the rehabilitation process and thus contribute to attain its goals. In the end, the rehabilitation plan will combine a variety of medical and psychosocial interventions considered necessary to achieve the specified objectives. As an illustration, Table 3 presents an overview of the treatment options typically available in cancer rehabilitation programs.
Table 3
Interventions in cancer rehabilitation
Medical treatment including pain management and complementary medicine |
Physical therapy and exercise programs |
Diet counseling |
Smoking cessation education |
Psychological counseling/individual psychotherapy |
Psycho-education |
Art therapy/occupational therapy |
Neuropsychological training |
In addition, specialized programs have been developed that address issues and sequelae of patients from a given diagnostic or treatment subgroup (e.g., patients with breast or prostate cancer or patients having undergone stem cell transplantation). Thus, rehabilitation programs designed specifically for women with breast cancer may, e.g., focus on comprehensive management of lymphedema, exercise, dietary counseling, post-operative management of breast reconstruction, psychological counseling or psychotherapy, and dance therapy in order to address problems with body image and self-esteem. Similarly, patients suffering from severe fatigue and decreased physical performance for a prolonged period of recovery after having received stem cell transplantation may also profit from a specialized program that might combine elements of physical exercise and psycho-educational interventions.
6 Psycho-Oncology in Rehabilitation
Psycho-oncological interventions are well recognized as an essential part of a comprehensive cancer rehabilitation program. They address the cognitive, behavioral, and emotional facets of the patients’ (and their families’) response to cancer and its treatment. During the past decades numerous psycho-oncological interventions based on individual or group therapy approaches have been developed (Newell et al. 2002; Holland et al. 2010), which are carried out also in rehabilitation centers. As meta-analyses and systematic reviews have shown, evidence of the effectiveness of these interventions is available at the high ranking EBM levels I or II (NHMRC 2003; Faller et al. 2013; Edwards et al. 2008). In a rehabilitation setting, psycho-educational group interventions are utilized to address the patients’ psychosocial distress and to give participants the opportunity to share their experiences and find a solution to their problems. These interventions are frequently based on a cognitive–behavioral approach and include various elements as summarized in Table 4. They typically encompass 4 to 12 sessions with a maximum of 10 to 12 patients each. These interventions are operated on the basis of a structured agenda that focuses on the most prevalent issues of cancer patients and aim at initiating an active coping behavior.
Table 4
Elements of psycho-educational programs in cancer rehabilitation