Organisation of Long-term Follow-up (LTFU) care
– PLAIN language summary
This PanCare PLAIN language brochure (hereafter referred to as summary) is intended for CAYA cancer survivors, their families and caregivers, healthcare professionals seeking to improve long-term follow-up (LTFU) care, and anyone else interested in optimising the organisation of LTFU care. This summary is primarily based on the evidence-based PanCareSurFup guidelines for organisation of LTFU care for CAYA cancer survivors [1].
Why Long-Term Follow-Up (LTFU) Care Matters
About 2 in 3 survivors of childhood, adolescent and young adult (CAYA) cancer experience health issues later in life caused by the cancer or its treatment (called late effects) [2]. Well structured long-term follow-up (LTFU) care can help detect late effects early and provide treatment and support, if necessary. LTFU care can have a positive impact on the quality of life of CAYA cancer survivors and the health system as a whole.
In many countries in Europe structured LTFU care still needs to be established or improved [3]. This PLAIN summary provides an overview of key elements of LTFU care and how you can get started or improve already existing care.
General recommendations for LTFU care:
- All survivors of CAYA cancer should have life-long access to person-centred LTFU care.
- LTFU care should start no later than 5 years after diagnosis.
- All survivors of CAYA cancer should be considered equal partners in decisions regarding their LTFU care.
- LTFU care should follow a structured approach and evidence-based recommendations.
- LTFU care should cover all domains of life (physical, mental and social wellbeing) and be provided by a multidisciplinary team.
- The needs and preferences of survivors and caregivers should be central in decisions about the organisation of LTFU care in their country/ region.
Late Effects
Late effects are health problems that CAYA cancer survivors may experience later in life related to the cancer or its treatment.
Late effects can be physical, like problems with organs or tiredness (fatigue), or psychosocial, like depression, anxiety, or trouble at school, work or other social settings.
These health problems are called late effects because they can appear months, years or even decades after the original cancer diagnosis and treatment.
Evidence-based recommendations
Evidence-based means the recommendations come from research and are backed up by studies.
Person-centred care
Person-centred care means that survivors are treated as individuals and as equal partners in decisions around their LTFU care. This means that their personal circumstances, values, needs and preferences are taken into account for decisions around their health.
What are key elements of the organisation of LTFU care?
The PanCare network formulated evidence-based recommendations for the organisation of LTFU care [1]. These recommendations cover three areas: Structure of care, Personnel involved and Components of care.
- Multidisciplinary setting: LTFU care should follow a holistic approach and include different medical specialties. Specific attention should also be given to mental health and psychosocial care and lifestyle advice.
- Led by expert centre: There are different ways (models) to organise LTFU care. No matter which model is or will be implemented in your country, LTFU care should be under the guidance of an expert LTFU care clinic.
- Shared-decision making: Survivors and healthcare professionals should work together to make decisions about the best care for the survivor at each stage. Survivors should be supported and empowered to actively shape their LTFU care in partnership with their healthcare professionals.
- Systematic commitment to LTFU care: National healthcare systems, health insurers and care providers should be committed to providing LTFU care. This should include sufficient consultation time and coverage of care costs. As healthcare financing varies across Europe, implementation should be adapted to national contexts while ensuring access to LTFU care for all CAYA cancer survivors.
- Survivors can choose their healthcare provider: After expert counselling by a LTFU specialist and considering the available options, survivors should be able to choose their healthcare provider. When available, a specialised LTFU care clinic is preferred for health concerns regarding late effects.
- One key worker is coordinating the care: A key worker/ coordinator should coordinate the care. This responsibility can be assigned to an existing healthcare provider (e.g. nurse practitioner or medical doctor) or established as part of a newly created role. The key worker should also be the first main point of contact for the survivor, if they have questions or concerns related to late effects.
- LTFU care teams should include: A key worker/ coordinator, a medical doctor specialised in late effects, a nurse practitioner, a multidisciplinary expert team and possibly other specialists.
- Surveillance of late effects: The main goal of LTFU care is the (early) detection and treatment of late effects that may occur after CAYA cancer. In order to do this, healthcare professionals need evidence-based guidelines for LTFU care to follow.
- Education for healthcare professionals: It is important that involved healthcare professionals have knowledge and experience of dealing with late effects and cancer survivorship topics.
- Education for survivors and their families: As well as expert counselling by a LTFU specialist, survivors and their families should receive information about late effects and why LTFU care is important for them.
- Coordination of research: LTFU care clinics should be involved in scientific research about late effects and LTFU care.
- An individualised Survivorship Care Plan (SCP): LTFU care clinics should provide individualised SCPs for all survivors no later than at entry into LTFU care. A SCP includes a treatment summary and recommendations for surveillance of potential late effects.
- Plan for care transitions: Successful LTFU care involves three key transitions: from active treatment to LTFU care, from a survivorship expert centre to primary care (for low-risk survivors), and from paediatric to adult health services.
Available options
In some countries, there may be multiple available care options for survivors.
LTFU care could be provided by
- a dedicated LTFU care clinic
- a pediatric oncology clinic or medical oncology clinic
- a general practitioner (GP) with a strong interest or training in late effects
- shared between the treating hospital and a local hospital or GP
Models of LTFU care
LTFU care could be provided by
- a dedicated LTFU care clinic
- a pediatric oncology clinic or medical oncology clinic
- a general practitioner (GP) with a strong interest or training in late effects
- shared between the treating hospital and a local hospital or GP
Multidisciplinary expert team
- a paediatric oncologist/haematologist
- a (neuro-) psychologist
- a cardiologist
- a endocrinologist
- a medical oncologist
- a haematologist
- a rehabilitation physician
- a occupational worker
- a radiotherapist
- a social worker
Evidence-based Guidelines for LTFU care
PanCare offers annually updated LTFU guidelines for the surveillance (monitoring) of late effects. These guidelines are available on the PanCare website and free to use for everyone. In total, there are 43 guidelines each covering one late effect.
View the PanCare LTFU Guidelines
The PanCare Guidelines are also translated into PLAIN language summaries for survivors, their families and non-specialist healthcare providers.
Education for survivors and their families
PanCare offers annually updated PLAIN language summaries about late effects and recommendations for long-term follow-up care in lay language. These PLAIN summaries are available on the PanCare website and free to use for everyone. In total, there are 47 PLAIN summaries, each covering one late effect. They are currently available in English, Dutch, Greek, Hungarian, Italian and Spanish.
View the PanCare PLAIN language summaries
The PLAIN summaries are based on the PanCare Guidelines for healthcare professionals.
Survivorship Care Plan (SCP)
Treatment summary
A treatment summary is an overview of the original diagnosis and all connected treatments. This document should be provided by the LTFU care clinic. PanCare offers a treatment summary template that is freely available for everyone.
What can I do?
In this PLAIN summary, we discussed the importance of LTFU care and key elements of organisation of LTFU care. It can feel overwhelming to read these recommendations, especially if LTFU care in your country still needs to be established or improved. Systemic changes take a long time and are a huge undertaking. However, small steps can already make a difference.
If you are a healthcare professional or a patient advocate and involved in organising or improving LTFU care in your country, you can use the PanCare Implementation Resources to help make changes. You don’t have to start from zero – use what’s already there!
If you want to get involved in systemic changes in your country, we recommend that you get in touch with national or European organisations (PanCare, SIOP-E, CCI-E and YCE) for healthcare professionals, survivors, caregivers or patients.
If you are a survivor and want to improve your personal LTFU care, you may find it useful to take a look at the resources available on pancare.eu, beatcancer.eu and the OACCUs’ Toolbox. If you don’t have a personalised Survivorship Care Plan (SCP long version and SCP short version) yet, it may also be helpful to ask your LTFU care clinic, if available, to provide one to you.
Personalised Survivorship Care Plan (SCP)
Ideally, you receive a personalised SCP by your LTFU care clinic. PanCare offers a long and a short version of SCP templates that are freely available for everyone.
Where can I find more information?
You can use the resources linked below to explore further information and additional materials on the organisation of LTFU care:
- Implementing Survivorship Care (PanCare) – Materials that can be used for the implementation of LTFU care in your country/ clinic. Among other resources, this includes:
- PanCare LTFU Guidelines for Surveillance of Late Effects – Annually updated evidence-based and consensus-based guidelines for surveillance of late effects after CAYA cancer
- PanCare PLAIN language summaries – Annually-updated information about late effects and LTFU care in lay-language for survivors, families and non-specialist healthcare providers
- PanCare Survivorship Care Plan (SCP) Long Version – A treatment summary and recommendations for surveillance of late effects
- PanCare Survivorship Care Plan (SCP) Short Version – A shorter SCP including a treatment summary and recommendations for surveillance of late effects
- Joint Recommendations for Mental Health and Psychosocial Care in CAYA Cancer Survivorship – Recommendations for mental health and psychosocial care developed by healthcare professionals and CAYA cancer survivors
- European Standards of Care for Children and Adolescent with Cancer – Chapter 6 on Survivorship Care and Transition Practices – Information on care for children and adolescents with cancer, specifically best practices for LTFU care and transition
- Health-care transitions for young people living beyond childhood and adolescent cancer: recommendations from the EU-CAYAS-NET consortium – Evidence-based recommendations for transition of care
- Barriers and facilitators associated with long term follow-up care for childhood, adolescent, and young adult cancer survivors: a systematic review – Information on barriers and facilitators associated LTFU care
[1] Michel G et al. Evidence-based recommendations for the organization of long-term follow-up care for childhood and adolescent cancer survivors: a report from the PanCareSurFup Guidelines Working Group. Journal of Cancer Survivorship. 2019;13(5):759-772. doi: https://doi.org/10.1007/s11764-019-00795-5
[2] Hudson M et al. Long-term Follow-up Care for Childhood, Adolescent, and Young Adult Cancer Survivors. Pediatrics. 2021;148(3). doi:https://doi.org/10.1542/peds.2021-053127
[3] Essig S et al. Follow-Up Programs for Childhood Cancer Survivors in Europe: A Questionnaire Survey. PLoS One. 2012;7(12):e53201. doi:https://doi.org/10.1371/journal.pone.0053201
Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.