For health professionals

Overall survival following stem cell transplantation has improved substantially and the number of survivors is continually increasing. Although the majority of stem cell transplant survivors attain a high quality of life following completion of treatment, a significant number are faced with late effects and medical problems similar to individuals with other chronic illnesses. Understanding and preventing or adequately treating the complications associated with blood cancer and its treatment will allow survivors to achieve the best health status possible.

Challenges for patients

Patients transitioning to follow-up care face a number of significant challenges in order to restore and sustain their health and overall wellbeing and, for this reason, it is important to recognise that survivors represent a vulnerable and high risk population. Quality of care for survivors includes not only surviving the cancer and its treatment but also living well.

Cancer journey

Survivorship is therefore a distinct phase of the cancer journey that demands ongoing specialised care shifting from a disease focused to a wellness centred approach that provides coordinated, patient-centred, comprehensive care, including detection and treatment of the late and long-term effects of cancer and its treatment. Care should include increased surveillance for non-cancer health problems and health promotion in order to minimise disability and maximise wellbeing and overall quality of life. The ultimate goal of high quality care is to achieve a range of desired outcomes for these survivors. It is our recommendation that all long-term survivors of stem cell transplantation be given the opportunity to benefit from specialist survivorship care in a dedicated clinic setting.

Who is a survivor?

Survivorship following cancer treatment is a distinct phase of the cancer care continuum. Traditionally, the term ‘cancer survivor’ was used to describe someone who appears cured of cancer, usually reflecting freedom from disease 5 to 10 years after completion of treatment. Survivorship now more often refers to life after a cancer diagnosis from the moment of diagnosis and the years thereafter. It is also now recognised that family members, friends, and caregivers are also part of the survivorship experience.

The need for survivorship care

Increasing numbers of cases of cancer are diagnosed in Australia each year. Of the 27,636 new cancers diagnosed in Victoria in 2008, 10% were blood cancers representing the 4th largest group of cancers in men and the 3rd largest group of cancers in women.

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52% of Victorians with blood cancers in 2004 survived at least 5 years from diagnosis. Gains in survival for many blood cancers including acute myeloid leukaemia, chronic myeloid leukaemia, myelodysplasia and lymphoma have been evident over recent years. Hodgkin lymphoma remains associated with stable high survival rates. The number of long-term blood cancer survivors is likely to continue to increase because of the rising incidence of cancer and improving survival rates due to advances in diagnosis and treatment.

Of particular note, stem cell transplantation as an additional treatment modality, either autologous or allogeneic - further increases the possibility of cure or extending life for patients with certain blood diseases. Nationally and internationally, the numbers of stem cell transplants performed annually continues to rise, paralleled by increasing numbers of long-term survivors.

Understanding the health and supportive care needs of this population is therefore becoming increasingly important. This is a happy challenge in that, for a large part, it stems from the successes of early diagnosis and treatment. The impact of cancer does not end once treatment and routine hospital follow-up are complete. Long-term cancer survivors may continue to live with uncertainty over potential physical and mental health problems, quality-of-life issues, and information and support needs. It is critical, therefore, that there is continued care beyond diagnosis and treatment integrating strategies to prevent, identify and treat these potential late effects.

Survivorship care plans

At the core of quality health care for cancer survivors is communication between health care professionals. Survivorship care plans have emerged as an important element of an improved and more coordinated approach to survivorship care. The Institute of Medicine, in its pivotal report From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that each person who completes primary treatment for cancer receive a comprehensive care summary and follow-up plan. In line with this recommendation, all Alfred Late Effects Clinic attendees and their general practitioners are provided with a written Survivorship Care Plan that includes a summary of all diagnosis and treatment details, a list of potential late effects, up to date recommendations for monitoring, a follow-up plan and useful resources. The goal is to generate a plan that is personalised to the patient’s specific disease, treatments, and identified needs. This Survivorship Care Plan is intended as a ‘living document’ and is updated annually at each Late Effects Clinic attendance.

While data to support their efficacy are still needed, survivorship care plans have the potential to empower and inform both survivors and health professionals on the follow-up care and monitoring required and to be a valuable communication tool to facilitate exchange of information between cancer survivors and other health care providers including general practitioners.