Survivorship & Late Effects

Roles and Responsibilities

Today, over 7,000 children and young adults less than 24 years old, living in Scotland, have had a diagnosis of cancer and, of those, about 6,000 were diagnosed more than five years ago. With cancer survival rates approaching 80%, the number of cancer survivors is likely to grow by 4% per year. By 2030, it is projected that the population of young cancer survivors will be in the region of 11,000, constituting 1 in 100 of the young adult population.

Completion of treatment for primary cancer does not signify the end of the journey for these young people, many of whom are at increased risk of morbidity and mortality. Following cancer treatment, it is reported that about two thirds of survivors of cancer in childhood and adolescence, have at least one physical or psychological problem affecting their health and well-being and around one quarter have had a severe or life threatening late complications of therapy.  Greater awareness of these problems dictates the need for vigilant long-term follow-up of survivors, with early intervention, treatment, and appropriate counselling. 

The Managed Service Network (MSN) intends to develop a robust and integrated national system of follow-up to meet the needs of a growing community of children, teenagers and young adults who have survived cancer.  The Survivorship Initiative, led by the Clinical Lead for Late Effects, aims to improve services for survivors by developing a risk-based approach to follow-up, in an age-appropriate environment, with the introduction of key workers and nurse-led services, supported by a web-based electronic system. This service will provide health surveillance, together with psychosocial support and education of survivors to encourage them to develop into independent adults. 

The MSN is committed to the introduction of an integrated and systematic approach across Scotland, developing models of care to ensure that those living with and beyond cancer have access to safe and effective care and receive the support they need to lead as healthy and active a life as possible. Improved awareness of cancer survivorship as a chronic health problem will facilitate the development of care pathways that will meet the needs of every patient throughout their lifetime.

Long term follow up services must be flexible enough to accommodate the needs of the young survivor as they transition throughout their life cycle and also to accommodate the individual heterogeneity of cancer survivors, reflecting the wide range of treatment exposure and adverse long-term sequelae.  Development of a service that can deliver individualised, comprehensive, therapy-based patient centred care is essential. It is envisaged that the Late Effects Clinical Nurse Specialist will play an integral role in this service.

It has been highlighted that improved communication of cancer information to patients and their families and between health care providers may contribute to greater engagement in follow-up programmes, raises awareness of potential late effects amongst survivors and enable clinicians to diagnose and, where possible, treat late effects earlier. Based on national guidelines, we have developed a template for the End of Treatment Summary and Individualised Care Plan, or ‘Health Passport’, which was introduced nationally in January 2012, and welcomed by health professionals and survivors.

Stratification of patients according to risk of late morbidity will maximise the use of NHS resources and provide age appropriate care as locally as possible.  With increasing time from completion of treatment, it is hoped that the majority of adult survivors will be independent and take responsibility for their own health, with health care support provided by their primary care physician and a readily identifiable pathway back in to the hospital system when indicated.  As a result, the primary care team is likely to play an increasing role in the long-term follow-up of survivors of childhood cancer and good communication between the hospital services and primary care will be essential.

Education of survivors and health care providers will hopefully reduce the burden of chronic health problems and improve quality of life for the growing population of children and young people who have been treated for cancer.