Summary of Guide recommendations
Cancon Guide is the main delivery of the joint action. The Guide is a coherent, patientcentered document and a key strategic tool for governments and policy makers. See Guide as pdf's
The four core chapters of the Guide focus on carefully selected topics. Below you can find a summary of each chapter.
Comprehensive cancer control networks
Community-level cancer care
Cancer survivorship and rehabilitation
Policy recommendations on governance, organization and evaluation of cancer screening
Governance of cancer screening
- Successful evidence-based cancer screening needs a competent, multidisciplinary and transparent governance structure with political, financial and stakeholder support.
- The legal code should provide a specific framework for population-based cancer screening, enabling as a minimum the following basic functions: personal invitation, mandatory notification and central registration of complete screening and outcome data and individual linkage to cancer and cause of death registries for appropriate quality assurance including audits.
- Successful implementation of effective cancer screening programmes requires significant resources for quality assurance, that is 10–20% of the estimated total expenditure of a full-scale programme.
- Implementation of population-based screening should be a carefully managed multistep process through the phases of coordinated planning, piloting, rollout and continuous improvement.
- The mandate and resources for screening coordination and training, and for the electronic information systems necessary for quality assurance and incremental improvement, must be secured before starting the population-based screening service.
- To secure the benefits of screening, routine linkage between the registries containing relevant data for defining the population, performance and outcome is essential and can be considered an ethical requirement of screening.
- Whenever relevant, evaluation and regular monitoring of cancer screening should also detect social inequalities and trigger research and interventions on improved equity in health. Research collaboration has an added value to develop interventions and solutions in the local settings where social barriers and social inequalities in cancer have prevailed.
- Benefits and harms of screening need to be clearly communicated to the public; a scientific consensus on the appropriate estimation method and estimate would be of great value as the appropriate balance may be judged differently by individuals.
- The cost-effectiveness of a programme or a specific modification of it should be evaluated prior to deciding on the full implementation. Member States should define a threshold value for decisions on cancer screening, considering affordability and available resources.
- Indicators for quality and effectiveness based on most recent evidence-based reviews should be monitored and acted upon regularly by updating the screening programme.
Potential new cancer screening programmes
- Quantitative estimates of the benefits, harms and cost-effectiveness of possible new cancer screening programmes are needed to decide on implementation. It is essential that the EU Member States finance randomized trials designed to produce information necessary for policy-making and investments are needed so that results become available in as early phase as possible.
- Active European research collaboration and pooling of results from randomized controlled trials and related health-economical assessments are necessary in order to obtain evidence relevant for the different settings, with potential variations in the burden of disease, health priorities, effectiveness, resources and affordability found among the European countries.
Comprehensive cancer control networks
Confronting the problem of inequality in cancer care
- We recommend in order to reduce travel distance to quality cancer care, one of the many cancer care inequalities, access points and patient pathways should be clearly defined, access points are as close as possible to where patients reside and that uniformly optimal care be provided as close to home as possible.
Structure, infrastructure and governance of a CCCN
- We recommend that a CCCN be a multicentric complex, combining units dealing with the management of all aspects of cancer care. These units will be in different locations and under a single governance structure. They will undertake to collaborate consistently in a structured way, in order to pursue their common goal with greater effectiveness and efficiency.
Care of cancer patients in a CCCN
- We recommend that a CCCN adopts a multidisciplinary personalized approach based on tumour management groups integrating specialized hospital care with care in the community, palliative care, psychosocial support, rehabilitation and survivorship care plan.
- Quality of care within the CCCN should be measured with quality indicators. A process for continuous quality improvement should be put in place and implemented.
- For each type of rare cancer, we recommend identifying within a CCCN which unit if any can provide the necessary expertise. If for a certain cancer no suitable unit can be identified, the patient should be referred to an appropriate unit outside the CCCN.
Cancer research in a CCCN
- We recommend that a CCCN takes full advantage of the proximity of patients, researchers and care providers to pursue high-value basic, translational, clinical outcome and population research programmes to fully support the delivery of optimal patient care within the CCCN.
Decision-making process for creating a CCCN
- Given the benefits that a CCCN can provide with respect to equity of access as well as quality of cancer care, it is recommended that the creation of one or more CCCNs is always considered in decision-making. When in a certain area a CCC already exists, a CCCN can be built based on it.
Performance indicators and evaluation models should be defined from the outset of the network.
Community-level cancer care
EU policy recommendations for quality improvement in cancer after-care at the community level.
- Manage cancer as a continuous process where patients pass (transit) different phases and stages. This can be achieved through the creation and updating of a cancer patient pathway going from screening outcomes through diagnostics and treatment to long-term monitoring in remission, life-prolonging treatments and palliative and end-of-life care.
(a) reflect the current level of knowledge in cancer treatment but also the specifics of the country’s health care system and its organization;
(b) secure the necessary resources – human, financial, equipment and medicines – at all stages of the pathway;
(c) develop the segment of the pathway for the cancer patients’ after-care in close collaboration between specialized oncological care and primary care providers; and
(d) organize an information exchange platform that enables all providers involved in cancer patient care to share the data and files relevant to the patient.
- An obvious need for coordination and organization through the creation of multidisciplinary teams at all levels and in the development of a survivorship care plan.
- Dynamic coordination and flow of information between the oncological specialized care and community care, necessary for the following reasons:
(a) the proper organization of seamless care when patients move between levels;
(b) mutual exchange of information concerning both the patient’s condition and disease before cancer as well as specifics of the cancer treatment, including side-effects, disabilities and longterm effects;
(c) the management of a proper uniform patient file bearing all the relevant information; and
(d) the assessment of the long-term patient needs for community care related to monitoring of cancer in remission.
- Organization of education and training for primary care providers. This is needed in order to strengthen providers' capacity to cope with the increasing population of cancer patients in after-care.
- Development of guidelines and guidance, at least for each of the most frequent cancers, on what to include and on what not to include in long-term monitoring of patients (system specific, differences in access to some tests and diagnostics), to include the following segments:
(a) recurrence detection, indicating the best frequency to perform diagnostic tests to detect cancer recurrence; the description of the signs and risk of recurrence in a given category of patients; and, finally, recurrence detection defined and elaborated for patient after-care in terms of the responsibilities of GPs (in case they are willing to perform this role);
(b) long-term effects of cancer with more information on the potential complications of individual types and locations of cancer and how these should be prevented and treated; more knowledge and recommendations on psychological support for cancer survivors are warranted; and
(c) recurrence prevention, with more research
- Coordination between the health and other sectors for many patients, not only for those that become disabled or are terminally ill. Treatment itself, long absences from work or treatment away from family may raise all sorts of problems (e.g. additional expenses or less of productivity).
Cancer survivorship and rehabilitation
Policy recommendations for quality improvement in cancer survivorship and rehabilitation for EU Member States.
Medical follow-up: focus on late effects and tertiary prevention
- An early and personalised follow-up programme should be systematically planned and delivered to each survivor:
(a) adequately assessing the survivors´ individual risk of multidimensional late effects of treatment and respective rehabilitation needs (e.g. physical, psychological, social, cognitive, sexual, nutrition); and
(b) creating opportunities for socially disadvantaged people to fully engage in follow-up programmes.
- Adequate and updated information on medium and long-term effects of treatments should be available:
(a) to survivors and their relatives; and
(b) to care providers involved in the follow-up, in particular primary care professionals, for better prevention and care.
- Identification and management of late effects of cancer treatment should be integrated in the professional training and continuous medical education of clinicians (including GPs).
- In tertiary prevention, self-management should be emphasized, particularly on lifestyle recommendations and on the risks of long-term effects:
(a) smoking cessation;
(b) weight control and healthy diet including limited alcohol consumption;
(c) sufficient sustained physical activity;
(d) avoidance of excessive exposure to ultraviolet radiation; and
(e) stress management.
- Physical activity should be integrated early in the care pathway for all cancer survivors.
- It should be an important component to consider at every phase of survivorship care for all survivors in order to maintain healthy lifestyle.
- Evaluation of physical and psychosocial rehabilitation needs should first be screened as follow:
a) baseline screening should be performed prior to the start of any cancer-specific treatment;
b) both physical and psychosocial screening should be carried out simultaneously by using simple algorithms; for physical screening, at least the following items should be screened: cardiac function, muscle strength and flexibility; for psychosocial screening, see item 8 below; and
c) after the first screening, regular updates should be performed on individual basis.
Needs for a person-centred approach in psychosocial rehabilitation, supportive and palliative care
- Periodic screening of psychological distress and psychosocial needs should be conducted:
a) during the entire cancer pathway by the health care professionals (e.g. oncologists, physicians and nurses) and integrated in routine cancer care; and
b) screening should be followed by adequate provision of psychosocial care.
- For the diagnosis of psychological conditions a specific assessment should be carried out by a psychological care professional:
a) using validated and simple tools and according to clinical practice guidelines for the assessment and management of psychological distress and morbidity; and
b) anticipating the specific needs of populations at high risk, including young populations (e.g. children, adolescents, young adults) and relatives.
- A step-wise or tiered model of psychological care is recommended depending on the level of distress, psychological condition and morbidity of each patient, with interventions ranging from:
a) information and psycho-education by primary oncology team to peer support;
b) e-health platforms for psychosocial support and self-management programmes;
c) Psychological interventions by professionals trained in psycho-oncology (e.g. psychologists, social workers, psychiatrists);
d) complementary spiritual support by chaplains and others; and
e) psychotropic treatments by trained physicians (e.g. psychiatrists, oncologists).
- Psychosocial interventions in individual or group format should be delivered by appropriately trained professionals with specific expertise in psychosocial oncology.
- Increased investment in training in psycho-oncology and communication skills for primary oncology staff is highly recommended.
- Existing clinical practice guidelines for psychosocial support of patients with cancer could be highly valuable and recommended for the provision of evidence based psychosocial care.
- Social and return-to-work issues should be integrated early into the cancer care pathway. Adaptation of working conditions for any patient returning to his/her previous work should be assessed at early stages.
- Public policies should be developed and implemented to support cancer patients from diagnosis to return to work including:
a) financial aspects such as access to loan, mortgages, life insurances;
b) implementation of a pan-European strategy to tackle the differences between workers with cancer in different countries and to prevent discrimination; and
c) generatation of more evidence to better understand the living conditions of cancer survivors who return to work.
- A person-centred approach should be implemented:
a) to access a multidimensional physical and psychosocial rehabilitation plan focusing on the skills of cancer survivors;
b) to safeguard cancer survivors’ working lives; their employability, competencies and capacity to work, as well as their motivation to work; offer new skills to self-employed workers to help them to achieve balance between health needs and work;
c) to involve peers, patient organizations and trade unions to help patients and survivors; and
d) to negotiate a patients’ bill of rights, including the right to work with special conditions (e.g. reduced hours of work or adapted working conditions).
- A work-centred approach should be implemented with a better involvement of employers in survivors’ return-to-work process:
a) to explore possibilities of changes in job function for cancer survivors and to encourage them to acquire new skills;
b) to facilitate the implementation of flexible working hours and options (remote working, part‑time work); and
c) to offer economic benefits to employers who agree to adapt the workplace to the needs of cancer survivors and to help self-employed workers to adapt their workplace and business to address health needs.
- Somatic and psychological symptoms as well as social challenges should be addressed in all phases of the cancer disease trajectory early, systematically and regularly. Treatment should be according to the best scientific evidence available.
- Formal education in palliative care should be a compulsory component of the professional curriculum for specialists in medical oncology, for GPs and community clinicians:
a) basic training should be mandatory in medical and nursing schools; and
b) specialized palliative care skills and services should be accessible to patients with advanced incurable disease and part of multidisciplinary tumour boards.
- Best achievable quality of life for the individual patient and the relatives should be part of a survivorship care plan for patients with late side-effects from cancer and antineoplastic treatments.
Multidisciplinary approach in survivorship care: coordination of providers and empowerment of survivors
- Psychosocial care, rehabilitation and palliative care should be integrated into the entire cancer pathway including the survivorship and rehabilitation period. Psychosocial, rehabilitation and palliative care specialists should be members of (or associated with) the medical team in hospitals and in community care.
- After the completion of the acute treatment phase, the follow-up period should begin with the elaboration of a survivorship care plan.
- The role of GPs and other primary care professionals should be actively supported to help them to manage all the care plan challenges:
a) their role should be clearly defined and tailored to the patient and the care plan needs; and
b) this role could evolve during the follow-up period.
- Communication between primary health care providers and health care specialists needs to be improved:
a) electronic patient records systems should be accessible to all health care providers treating the patients; and
b) communication between patients and health care providers should be improved.
- A key health care professional assuming a case management role should be assigned to each patient in accordance with medical and/or psychosocial specific requirements. This health care professional could play a main role in reducing the vulnerability of the patient, for example with the management of adverse drug effects.
- Empowerment of patients and their relatives should be enhanced to increase their participation in self-management, rehabilitation and back to work programmes. Online programmes would facilitate this process.
- Education and self-management programmes should be developed and evaluated:
a) better access to these programmes should be available for underserved and deprived populations (low income/low education);
b) assessment of patients’ needs should be systematically part of the development of an education programme; and
c) evaluation of these programmes should assess the impact on the personal, organizational and health care policy levels, including cost-effectiveness and impact on health care quality.
- Training of health care professionals should include communication skills alongside medical education:
a) regarding information/communication/knowledge of survivorship and rehabilitation needs;
b) management of late effects.
Childhood, adolescent and young adults issues in cancer survivorship care
- Transition of care from pediatric oncology to adult medicine, including a survivorship passport for each patient, should be organized to guarantee adequate long-term follow-up and setting up appropriate intervention (26).
- It is necessary to aim for a more efficient survivorship care planning and coordination to respond to the challenges of the prevalence of chronic conditions, health status deteriorations, treatment and complex prevention. Determining the most effective models of care for childhood cancer survivors is the main step forward.
- Rehabilitation and supportive care should be specifically offered to children, adolescent and young adults as cancer survivors, in particular adapted physical activity. A routine yearly psychosocial assessment with attention to social, psychological, and behavioral issues, educational and/or vocational progress should be provided to this population.
- End-of-life care and palliative care for children and adolescents should be improved across Europe.
Perspectives in survivorship and rehabilitation cancer research
- An information and data collection system focused on late adverse effects (physical, psychological, cognitive, social, sexual), coupled to the surveillance of patients and involving primary care professionals, should be set up. More patient-reported outcome measures and their routine use are needed.
- Use of cancer registries to collect data on survivors would produce stronger epidemiological data, including lifestyle, quality-of-life or socioeconomic information:
a) to better identify the causes of inequalities in survivorship;
b) registries should be expanded to include additional factors that influence the quality of life (e.g. rehabilitation and employment issues);
c) patient reported outcomes could also be a way to collect appropriate information.
- Clinical research should evaluate the feasibility, the efficacy and the cost-effectiveness (including the economical dimension) of non-drug-related interventions such as self‑management and e-health programmes.
- Future research is needed to establish a multidimensional rehabilitation model focused on the quality of life and the coordination of complex care to better address the management of late effects across the whole survivorship trajectory. More research would also be required to maximize the long-term follow-up and care of childhood cancer survivors and to identify the genetic risks associated with late effects and second cancers.
- More solid methodological randomized controlled trials and cohort studies are needed in order to reduce the intensity of cancer treatments while maintaining their efficacy and thus reducing the probability of late effects, especially in childhood cancer survivors.