Purpose Cancer is a prevalent disease. It is expected that the number of people who will be diagnosed with cancer in the Netherlands will increase from 89,200 in 2008 to 95,000 in 2015. The number of people living with cancer or the effects of cancer on a psychological, physical and social functioning will increase from 366,000 in 2000 to over 690,000 in 2015 185. Complaints, such as fatigue, lead to a lower quality of life, reduce functioning in activities of daily living and reduce participation in the labour market. Cancer rehabilitation can help a large number of patients diagnosed with cancer deal with the effects of cancer and cancer treatment and improve their quality of life and participation in the labour market.
In its report ‘Follow up in Oncology' (‘Nacontrole in de Oncologie') dated 2007 87, the GR (Health Council of the Netherlands) advises further substantiation of the contribution made by rehabilitation programmes to prevent residual complaints. Thus far, the available evidence on cancer rehabilitation has not been released in the systematic form of a guideline, either nationally or internationally. This lead the CCCN (Comprehensive Cancer Centre the Netherlands) to develop a multidisciplinary evidence-based guideline ‘Cancer Rehabilitation', financially supported by the Netherlands Organisation for Health Research and Development (ZonMw, project number: 150020027).
The importance of this guideline is emphasised by the Health Care Insurance Board (CVZ), which has indicated their support for the development of a guideline on cancer rehabilitation. The guideline promotes further elaboration of the standpoint of the CVZ (submitted to the VWS (Ministry of Health, Welfare and Sport) on January 15 2009) that cancer rehabilitation forms part of cancer care and therefore should be insured according to the Health Insurance Act 45. The minister has endorsed this standpoint per 2010. The provision in the basic health insurance policy for cancer patients now needs further detailing. The expectation is that this guideline will contribute to further shaping this regulation. This will enable cancer rehabilitation to become accessible to all patients who may benefit from it and for it to form part of standard care, as with cardiac rehabilitation.
Cancer rehabilitation Cancer Rehabilitation is defined by CVZ as care that is focused on the functional, physical, psychological and social problems associated with cancer, including aftercare and rehabilitation. It concerns advice and, where needed, guidance in dealing with the disease (coping), recovery, prevention of deterioration and improving physical condition. According to CVZ, cancer rehabilitation needs to focus on the entire process diagnosis - treatment - aftercare for all patients.
This concerns the period during or after completing treatment with curative intent and during the disease- and symptom-focused palliative phase. During the palliative phase, the aim shifts to optimising the physical condition and quality of life of patients in the palliative phase. CVZ indicates that physical activities (exercise) should form part of cancer rehabilitation during all phases 45. The recommendation by CVZ to mainly focus the guideline on one of the components of cancer rehabilitation, physical activities (exercise), was adopted by the guideline development group. Arguments to do so were:
The existing positive experience with the programme ‘Herstel en Balans' (a group rehabilitation programme) in which physical training is an important part
The extensive Dutch and international literature that exists on the positive effects of physical training in the prevention and reduction of long-term side effects of the treatment of cancer
A pragmatic consideration not to select all the options imaginable for cancer rehabilitation, but to concentrate the guideline on one main focus with the most plausible efficacy and feasibility.
The guideline ‘Cancer Rehabilitation' is mainly focused on achieving optimal cancer rehabilitation, in a tailored and timely manner for patients with cancer. The guideline outlines:
Prevalence of complaints
Detection of complaints and referral
The intake process prior to cancer rehabilitation
Interventions within cancer rehabilitation
Measuring tools for effect evaluation
Empowerment of the patient
The guideline is intended for both clinicians and nurses and other primary healthcare professionals who refer patients for cancer rehabilitation as well as those providing cancer rehabilitation.
This guideline is in seamless alignment with the guideline ‘Screening for psychosocial distress' and the guideline ‘Cancer Survivorship Care' 115275. The guideline ‘Cancer Survivorship Care' is a basis for other guidelines that relate to cancer aftercare. This guideline contains recommendations for the aftercare for people with cancer in the first year after completing primary treatment. An important recommendation is a programmatic approach to aftercare, supported by an aftercare plan for each patient. The systematic detection of residual complaints and aftercare requirements, and the treatment or referral for these is a component as recommended in the guideline ‘Screening for psychosocial distress' and recommended in this guideline.
Scope The guideline is aimed at patients over 18 years of age. It concerns patients during or after completing cancer treatment with curative intent and during the palliative phase of all oncological disorders. For the palliative phase, the phase that begins when it is clear there is no longer a chance of curation, the guideline is aimed at the phases of disease-focused and symptom-focused palliation and therefore explicitly not on the phase of terminal palliation (see Figure 1) 280.
The guideline focuses on the long-term and late effects of cancer treatment that occur with many patients, more or less independent of the type of tumour; especially cancer-related fatigue, depression, anxiety and limitations in activities of daily living, and social functioning. Please refer to the relevant guidelines and protocols (see http://www.oncoline.nl/) for complaints associated with specific tumours. An example of this is the treatment of lymphoedema in patients with breast cancer (see the guideline ‘Mamma carcinoma' 274 and the guideline ‘Lymphoedema' 143).
The guideline focuses on the description of interventions that, at a minimum, contain physical training. The definitions used and detailed scope can be found in (see appendix 4). As a result of this decision, effects of psychological, ergotherapeutic and dietary interventions, for example, that do not contain physical training have not been researched. Limiting the scope to adults and physical training does not mean that the importance of cancer rehabilitation with children or adolescents with cancer or the importance of, for example, dietary advice is underestimated. As indicated previously, the guideline cannot be all-embracing for pragmatic reasons.
Objective The most important objective of the guideline ‘Cancer Rehabilitation' is achieving optimal cancer rehabilitation, in a tailored and timely manner for patients with cancer. The following results are delivered:
For professionals in cancer rehabilitation:
Multidisciplinary guideline ‘Cancer rehabilitation' with usable recommendations for daily practice. Central to this is the question as to which form of cancer rehabilitation in which phase of the care process is the most effective for which patient.
A decision tree for ‘Cancer rehabilitation' in order to compose a tailored cancer rehabilitation programme or for tailored referral of the patient on the basis of the intake and goals of the patient.
For the cancer patient:
Through cancer rehabilitation in a tailored and timely manner: an optimal quality of life, complaint-free or with less (residual) complaints such as fatigue, and a faster work and social participation where possible. For patients in the palliative phase, the objective is to utilise cancer rehabilitation to optimise the quality of life, including social and also work participation if possible and desired, through a reduction in fatigue and other complaints.
Patient information on cancer rehabilitation with the most important conclusions and recommendations from the guideline.
For policymakers, sponsors and researchers:
Insight in the costs and benefits of cancer rehabilitation to support policy development and the financing of cancer rehabilitation, so that cancer rehabilitation becomes accessible and standard care for cancer patients or those who have had cancer.
An overview of gaps in knowledge as the primary basis for a research agenda on ‘Cancer Rehabilitation'.
Indicators for the evaluation of guideline use.
Target group This guideline is intended for all professionals involved in detecting complaints and referring patients for cancer rehabilitation and those who provide cancer rehabilitation to adult cancer patients. In particular, this concerns: medical specialists, general practitioners, industrial/occupational physicians, (specialised) nurse(s) (specialists), rehabilitation specialists, sports doctors, (specialised) physiotherapists, ergotherapists, psychologists, medical social workers, spiritual care providers and dieticians. In addition, the guideline is intended for policymakers, sponsors and researchers in the area of cancer rehabilitation.
Project group From October 2008 through to January 2009, the project group worked on formulating a plan of approach, formulating a questionnaire for the inventory of clinical problems amongst professionals, organising an interactive work conference for cancer patients or those who have had cancer, formulating clinical questions and forming the guideline development group. The project group convened twice.
A questionnaire was distributed amongst professionals for the clinical problem inventory in October 2008. Information about the questionnaire, distribution list and analysis of the problem area inventory can be found in Appendix 1 (see appendix 1). An interactive work conference was held in November 2008. Patients and a few professionals were asked during the conference about their wishes and suggestions in relation to cancer rehabilitation. Information and a report on the work conference can be found in Appendix 2 (see appendix 2). The most relevant clinical problems have been summarised in ten clinical questions (see appendix 3), which are answered in this guideline. It concerns the (screening of) complaints by cancer patients or patients who have had cancer, the intake process prior to cancer rehabilitation, interventions within cancer rehabilitation (both during and after completing treatment) in the curative and palliative phase, effect evaluation and empowerment.
Guideline development group The guideline development group worked on the concept text for the guideline from February 2009 through to August 2010. Each clinical question was assigned to two or three development group members. Members of the NFK (Dutch Federation of Cancer Patient Associations) put forward the patient perspective for all clinical questions, especially clinical question 10 (empowerment). Each development group member has supplied input to the CBO (Dutch Institute for Healthcare Improvement ) for execution of systematic searches for relevant literature in relation to his or her clinical question. Literature was selected by development group members. The literature selected was summarised and attributed a level of evidence by the CBO, under the responsibility of development group members. The development group members subsequently formulated scientific conclusions, considerations and recommendations.
There was limited evidence available for cancer rehabilitation. Evidence was reasonable for some areas, but in other areas there was little or no evidence. While further research is required on cancer rehabilitation (see the overview of gaps in knowledge in relation to this), important lessons can already be gained from current practice. In areas in which no evidence was available, development group members have put forward additional literature and made recommendations on the basis of experience and expertise. To this end, the development group has made use of information from the focus group meeting and a questionnaire amongst professionals with practical knowledge in April 2010 (see appendix 10). The texts were discussed during plenary meetings and, after comments were processed, agreed on. The full guideline development group convened nine times. The concept guideline was provided to relevant scientific and professional associations and the regional CCCN working groups for commentary in September 2010. The project and guideline development group submitted the guideline to peer review during an interactive work conference during the International symposium of cancer survivorship care in November 2010. A small editorial group convened twice after the comments were processed. The guideline was subsequently established by the full guideline development group on March 15 2011 and sent to the relevant professional associations for authorisation.