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The Australian Cancer Survivorship Centre (ACSC) is a peak body for supporting and enabling excellent survivorship care. ACSC is focused primarily on the post-treatment phase of survivorship, but operates with the understanding that survivorship begins at the point of diagnosis and spans across the entire cancer journey.
About cancer survivorship
In Australia, there are more than 775,000 cancer survivors, which account for approximately 3.3 per cent of the population. In Victoria, there are just over 230,000, representing four per cent of the population. The majority of these people are living beyond cancer; some will have been recently diagnosed and others may be living with advanced cancer. See the Victorian Cancer Registry Cancer Facts Edition May 2014
A variety of definitions of cancer survivorship have emerged in recent years. Each definition emphasises the ongoing unique needs of individuals who have experienced a diagnosis of cancer. In Australia, survivorship is generally considered to be the phase after completing initial treatment.
“From the moment of diagnosis and for the remainder of life, an individual diagnosed with cancer is a survivor: - NCCS Charter (National Coalition for Cancer Survivorship)
“The term cancer survivor refers to a person who has been diagnosed with cancer, from the time of diagnosis throughout his or her life. The impact of cancer on family members, friends, and caregivers of survivors is also acknowledged as part of survivorship.” (Centres for Disease Control and Prevention)
“An individual is considered a cancer survivor from the time of cancer diagnosis through the balance of his or her life, according to the National Coalition for Cancer Survivorship and the NCI Office of Cancer Survivorship.” (Institute of Medicine (IOM)
“Survivorship encompasses those who are undergoing primary treatment, those who are in remission following treatment, those who are cured and those with active or advanced disease.” (National Cancer Survivorship Initiative, 2010).
Cancer survivors may experience a number of physical, emotional, psychological, spiritual, informational, social and practical unmet needs in the months and years after completing treatment.
Needs assessment and interventions to address issues is an essential element of survivorship care. Needs assessment tools may be used to assess individual patient needs or collect data for a survivorship program. The tools must be able to identify high unmet needs, have good acceptability and be easy to implement for patients and into clinical practice. This is especially important as the cancer survivor population and the burden on the healthcare system continues to grow.
ACSC recommends healthcare providers should carefully consider the most relevant and psychometrically rigorous needs assessment tool for use with their patient group. A tailored approach to needs assessment and follow-up should be used to ensure that needs are identified and optimal patient centred care is delivered.
Elements of survivorship care
The US Institute of Medicine report From Cancer Patient to Cancer Survivor: Lost in Transition highlights the need for models of survivorship care to include:
- prevention of new and recurrent cancers and other late effects
- surveillance for cancer spread, recurrence or secondary cancers
- assessment of late psychosocial and medical effects
- interventions for consequences of cancer and treatment
- co-ordination between primary care providers and specialists.
The Institute of Medicine made key recommendations for the improvement of survivorship care including:
- the implementation of self-management skills training
- the development and use of survivorship care plans (SCPs)
- the adoption of alternative models of care.
Prevention of future cancers, recurrence, other illnesses and late effects are important for cancer survivors. Survivors can benefit from advice about healthy lifestyle, alcohol, physical activity, smoking, diet, psychological support, UV radiation protection and bone health.
Cancer survivors need to continue to be screened for other cancers (breast, cervical and bowel cancer), unless screening for a particular cancer is part of their follow-up arrangements. See further information regarding surveillance after treatment.
A needs assessment tool promotes consistency in assessment and guides consultation with the healthcare professional. Routinely assessing for needs assists in identifying if survivors are experiencing problems, concerns or late effects of treatment, and their impact or urgency. Further information is available regarding late effects of cancer treatments.
The Distress Thermometer and Problem List is validated for use in the pre-treatment/treatment phase, however is not validated for use in the survivorship phase. The National Cancer Survivorship Initiative recommends the use of the Holistic Needs Assessment Tool.
When planning care for cancer survivors, the following should be considered:
- Provide a written record detailing the cancer, treatment and possible side effects of treatment, including any effects that may occur in the longer term.
- Detail the screening and tests the patient needs and which health specialist will provide the tests.
- Provide information about the risks of recurrent and secondary cancers and what symptoms to be aware of.
- Provide advice on smoking, diet, exercise, alcohol, bone health, sun protection and obesity.
- Be alert for any troubling issues around employment and insurance and recommend that the survivor seeks expert advice if needed.
- Provide information about cancer support groups and helplines such as the Cancer Helpline 13 11 20.
- Make sure the survivor and their family or carer knows who is coordinating their treatment and who to contact in an emergency.
The above elements are part of the survivorship care plan.
Survivorship care plans
Survivorship care plans facilitate communication between the survivor, oncology team and GP. The survivorship care plan should detail:
- the survivor’s cancer type and treatments
- potential short- and long-term effects of treatment
- what the survivor should look for (including psychosocial effects) and how frequently they should visit the doctor for check-ups and screening
- screening guidelines and symptoms of cancer recurrence, including second primaries
- how the survivor’s follow-up care will be coordinated between the oncology specialist, GP, nurses and allied health professionals, and who to contact between appointments
- lifestyle changes to reduce the risk and severity of treatment side effects, prevent comorbid conditions and promote better health
- useful community resources on employment and insurance issues arising from cancer and its treatment
- fertility planning for patients of reproductive age
- the survivor’s values and preferences regarding their care.
The ACSC is currently undertaking work surrounding the usage and delivery of survivorship care plans. If you are interested in hearing more about this project please email firstname.lastname@example.org or call 03 9656 5207.
To access the Evaluation of the implementation of survivorship care plans at Peter MacCallum Cancer Centre report, please click here.
Models of survivorship care
Increasing evidence is emerging about the types of service delivery models that will support implementation of the key elements of survivorship care.
The American Society of Clinical Oncology (ASCO) has recommended that approaches to cancer survivorship care should:
- Promote successful models of survivorship care and tools that optimise the transition process between oncology and primary care providers.
- Promote a shared-care model for survivorship care that includes communication between the oncology specialist and primary care provider and successful transition of the patient from the oncology setting to primary care setting post treatment, using a risk-stratified approach as part of the survivorship care plan.
- Partner with other organisations to support demonstration programs to test models of coordinated, inter-disciplinary survivorship care in diverse communities and across systems of care.
Designing efficient cancer follow-up to meet individual needs is supported by stratifying patients according to risk, tumour type, treatment and personal circumstances. Risk stratification is defined as the process of quantifying the probability of a harmful effect to individuals resulting from a range of internal and external factors (i.e. demographic characteristics and/or medical treatments).
The Stratified Pathways of Care model describes three forms of care, depending on risk and needs assessment and the person’s wishes:
- Supported self-management: The survivor is supported by health professionals, carers and the health system to manage their condition. This incorporates health promotion, risk reduction, informed decision making, care planning, medication management, and working with health care providers to attain the best care and negotiate the health system. It is recommended that ALL survivors be equipped with self-management skills.
- Shared care: In addition to the above, survivors have face-to-face phone or email contact with primary care providers and cancer specialists. GPs need to be well resourced and understand their responsibilities to take on the coordinating role, and need good communication with the oncology team. Treatment summaries and survivorship care plans can be effective communication tools between oncologists and GPs.
- Complex case management: Survivors are given intensive support to manage their cancer and/or other conditions. This might be through a multi-disciplinary team or a long-term follow-up or late effects clinic.
Follow-up care for cancer survivors
The ACSC has developed a number of resources for health care professionals. The following resources provide information about follow-up for different cancer types.
- Follow up of breast cancer survivors.
- Follow up of colorectal cancer survivors.
- Follow-up of survivors of diffuse large B cell lymphoma (DLBCL), a non-Hodgkin lymphoma subtype.
- Follow-up of survivors of Hodgkin lymphoma.
- Follow up of prostate cancer survivors.
Cancer learning, survivorship
We have developed a suite of evidence based learning modules for health professionals that explore contemporary knowledge around survivorship care as well as mechanisms on how to apply this knowledge into your daily practice. The cancer learning, survivorship e-learning package was developed by ACSC in collaboration with the Peter MacCallum Cancer Centre, University of Sydney, Queensland University of Technology, and national survivorship experts. It provides evidence-based practical tools, tips, resources and learning modules.
General practice clinical placement pilot project
While the numbers of cancer survivors is increasing due to advances in early detection, treatment and population ageing, patients often experience unmet needs in their cancer survivorship. There is growing support and enthusiasm for greater general practice involvement in cancer survivorship care. In 2015 the Australian Cancer Survivorship Centre, with support from the Department of Health and Human Services, implemented a General Practice Clinical Placement Pilot Program at the Peter MacCallum Cancer Centre, East Melbourne. The program was developed to better understand how speciality care and primary care can work together in shared care. The program brought together general practice and hospital-based oncology teams for a total of 10 hours, working together across five Peter Mac cancer streams. The program evaluation found that the program was feasible and highly regarded. General practice participants reported that the program provided them with confidence in incorporating survivorship care into current chronic disease management protocols. Oncology specialists valued the opportunity to provide a clinical learning environment with their general practice colleagues and expressed support for further collaboration to build shared care practices. The Final Report on the General Practice Clinical Placement Pilot Program is available here.
If you would like to know more about this project: contact Judy Evans, Project Manager Primary Care on 03 9656 9042 or email.
ACSC will be conducting a number of educational workshops in 2015. To register your interest for future educational workshops, email email@example.com or call 03 9656 5207.
The ACSC runs regular workshops for health care professionals entitled ‘Delivering Innovative Cancer Survivorship Care’. This introductory workshop is open to all nursing and allied health professionals. It provides participants with key knowledge, skills and resources for implementing cancer survivorship care into practice. The program covers key elements of survivorship, the common experiences of cancer survivors, motivational interviewing techniques, chronic disease management in primary care, tools and resources, group work to reinforce new skills.
Health professionals can find out more here.
Peter Mac staff can register through the nursing education intranet page.
The ACSC is also available for department based in-services.
For more information about workshops or to book an in-service please contact Georgina Wiley on 96569040 or Georgina.firstname.lastname@example.org
Australian Cancer Survivorship Centre
Peter MacCallum Cancer Centre
Locked Bag 1, A'Beckett St
Phone: +61 3 9656 5207
Associate Professor Michael Jefford, Director
Linda Nolte, Manager
Phone: +61 3 9656 5207
The Australian Cancer Survivorship Centre is proudly supported by The Pratt Foundation and Department of Health.
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