The Working Group for supportive Care, Rehabilitation and Social Medicine [Arbeitsgemeinschaft Supportive Maßnahmen in der Onkologie, Rehabilitation und Sozialmedizin, ASORS] is a multidisciplinary working group within the German Cancer Society. ASORS members come from many different disciplines and medical societies.
Modern cancer treatment has fundamentally improved the cancer-free survival of patients and the overall survival for individuals with many types of tumour. This increasingly raises the issue of cancer survivorship and relates closely to the motto of the Multinational Association of Supportive Care in Cancer (MASCC) – Supportive care makes excellent care possible.
During and after cancer treatment supportive and rehabilitative therapies focus on interventional or prophylactic measures to manage side effects and help patients to recover from intensive therapeutic regimens. Although often in daily use, evidence-based guidelines for these therapies are rare and comprehensive guidelines for supportive care and rehabilitation in oncology do not exist.
Responding to this gap, ASORS has set up two interdisciplinary and multiprofessional projects to develop guidelines on the S3 (evidence-based) level:
- the S3 guideline for supportive care in cancer, created together with the German Society of Hematology and Oncology [Deutsche Gesellschaft für Hämatologie und Onkologie eV, DGHO] and the German Society of Radiooncology [Deutschen Gesellschaft für Radioonkologie e.V., DEGRO]
- the S3 guideline on rehabilitation and social medicine, created together with the German Society of Rehabilitation Science.
To produce the S3 guidelines for supportive care in cancer, ASORS is working within the guideline progammes of the German Medical Societies and the German Cancer Society. As much as possible of these guidelines will be evidence-based, but as there is difficulty in setting up large randomized trials in this field, there will also be parts with expert consensus.
Guidelines are an important instrument for ensuring quality of care. In particular, guidelines for supportive care in oncology are the basis for managing side effects of the treatment and enable the treatment to be administered in the planned time and dose schedule. Thus, they are not only a supportive document for cancer treatment but also an essential part of the therapy itself, as a reduction in dosage or altered administration due to side effects reduces the effectiveness of the therapy.
Summary of existing guidelines in supportive care
Both European Organisation for Research and Treatment of Cancer (EORTC) and American Society of Clinical Oncology (ASCO) have guidelines regarding anaemia dating from 2010 for ASCO. ASORS will decide whether to adapt existing guidelines or begin de novo.
Neutropenia and infection
ASORS plans to adapt existing guidelines concerning neutropenia from ASCO (2006) and EORTC (2011). Infections in cancer care can include febrile episodes of unknown origin, bacterial, viral or fungal infection, and sepsis or catheter infections. ASORS has yet to decide which of these problems to include in the new guideline. Of help is an algorithm for daily practice contained in the Working Group of Infections in Hematology and Oncology [Arbeitsgemeinschaft Infektionen in der Hämatologie und Onkologie, AGIHO] guidelines.
There is no existing national or international evidence-based guideline on this issue. The MASCC study group on skin toxicities has worked out a clinical practical guideline (www.mascc.org). However, several topics are missing, including toxicity during (V)EGFR-therapy, hand–foot syndrome, alopecia, and reactions to other single agents like taxanes or bleomycin. De novo research therefore seems necessary.
The ASORS guideline will draw from existing documents relating to mucositis including a MASCC guideline from 2004. This will need to differentiate between oral and gastrointestinal forms of mucositis as well as mucositis of other organs, such as vesical or vaginal mucositis. An algorithm for prophylactic and interventional treatment should be included in the ASORS guideline.
An ASORS guideline including case reports and expert consensus exists and has been submitted for publication. As an S-3 level guideline, this is expected to have legal consequences.
Existing guidelines from ASCO, DGHO, National Comprehensive Cancer Network (NCCN) cover this aspect of cancer-related disease. There is a need, however, for a ‘bedside’ algorithm for treatment or prophylactic anticoagulation.
Nausea and vomiting
MASCC/European Society for Medical Oncology (ESMO) and ASCO updated their evidence-based guidelines on these side effects in 2010/2011. The ASORS S3 guidelines will draw on these and the guidelines of the US NCCN on clinical practice which are regularly updated.
In 2008, the German Association for Neurology [Deutsche Gesellschaft für Neurologie, DGN] established a guideline for diagnostic and therapeutic procedures in neurology. This included a chapter for neuropathy and neuritis, and reference to chemotherapy-induced peripheral neuropathy (CIPN). Even so, there remains the need for new guidance on the management of CIPN after different antineoplastic agents, although DGN may address this in the next update.
Radiotherapy induced toxicity
The DEGRO S1-guideline of 2006 has recently been updated and upgraded to S2e, which provides an opportunity to produce a further update for the S3-guideline.
The FertiProtect strategy includes a useful algorithm but is apparently not evidence-based. Other than that there exist recommendations from ASCO and German Association for Gerontology and Geriatric Medicine [Deutsche Gesellschaft für Gerontologie und Geriatrie, DGGG], there are no guidelines.
German Gynaecology Oncology Group established a guideline that covers issues such as bisphosphonates, and surgical and radio-oncological management of bone metastasis. This contains an Oxford grading and a report of methods which could be adapted for the ASORS S3 guideline.
Management of cancer therapy
Cancer centres usually work with internal guidelines and standard operating procedures concerning their individual setting. A guideline would not mention each of these single centre specificities. Furthermore, due to the great variety of cancer therapies, certain issues would also be omitted. The management of cancer therapy is a topic that is likely to be covered in an update rather than in the first version of the guideline.
Rehabilitation and social medicine
Goals and challenges in rehabilitation and social medicine in oncology
The planned ASORS guideline for rehabilitation and social medicine will be an S3-guideline containing, as far as possible, evidence-based knowledge aimed at providers of rehabilitative therapies and those who apply or pay for the setting.
Traditionally rehabilitative therapies in Germany are offered in specialized rehabilitation centres, usually situated in picturesque landscapes where the traditional German spas arose, for example, at ‘Bad’ Nauheim, ‘Bad’ Wiessee or ‘Bad’ Kreuznach.
The aims of recreational therapies following cancer treatment focus on physical and psychological well-being. For a long while ‘to rest’ or ‘relax’ was one of the main elements in this setting. This has changed fundamentally during the past decade. Nowadays, rehabilitative treatment deals with issues such as returning to work and participating in social life. Rehabilitation is therefore now an integral part of the concept of cancer survival.
The oncological rehabilitative units offer a programme which holistically combines therapies to restore physical activity, as many cancer patients suffer from exhaustion and fatigue after treatment. Added to this is psychological support from specialized, psycho-oncological psychotherapists. Depending on the needs of patients, the rehabilitation treatment may also include physiotherapy, ergotherapy (occupational therapy), training in speech and swallowing, as well as a nutritional programme.
Rehabilitation is based on the International Classification of Functioning, Disability and Health, which focuses on functional deficits due to malignant disease and its treatment, compared to the International Statistical Classification of Diseases and Related Health Problems (ICD) which focuses on diagnosis. This includes a training programme in which activity, information and return of empowerment dominate rather than rest and regression.
For historical reasons, the cost of rehabilitation in Germany is usually covered by the retirement fund. If the client has not made sufficient payments into the retirement fund, their health insurance or other parties might cover the cost.
Access to rehabilitation depends on an individual’s situation, needs and information provided, usually by social workers. Up to now about 20–30% of all cancer patients take advantage of rehabilitative treatment, while others may not due to lack of information or other reasons. It has therefore been impossible in the past to design randomized trials. Furthermore, it has been difficult to evaluate the effect of single therapies in rehabilitation, since the combination of physical training, education and psychological support might together lead to an individual’s rehabilitative success. For example, rehabilitation in other European countries or outside Europe differs with regards to time schedules and duration. In Germany, the patient is usually treated daily for three weeks in an inpatient setting whereas in other countries outpatient management with alternating therapy periods or ‘days off’ can lead to a much longer rehabilitation period.
The planned ASORS guideline for rehabilitation and social medicine will need to take these features into account and will evaluate existing guidelines for rehabilitative treatment.
Petra Ortner, PharmD, PhD
DE-81827 Munich, Germany
Christa Kerschgens, MD
Vivantes Rehabilitation GmbH
DE-12157 Berlin, Germany