European mapTessa Fuchs2025-04-24T18:10:01+02:00

EUROPEAN MAP OF LTFU CARE

The European map of long-term follow-up (LTFU) care shows the availability and current status of LTFU care across European countries and care centers. It is based on a survey conducted within the EU-CAYAS-NET project, along with valuable input from healthcare professionals via our European map form.

While the map is still in progress, your contribution can make a real difference! Help us complete the picture by submitting information through the form or by sharing the map with your network

The map was last updated on: 24/04/2025

All
Availability
Start follow-up care
Length of LTFU care
Cost coverage of LTFU care
Peer-to-peer support

Do you want to contribute?

Is your country or LTFU care center not yet represented on the map? Is any information about your country or LTFU care center incorrect?

Fill out the form below or write us an email at info@pancare.eu. Your input helps us to create a more accurate and inclusive resource for healthcare professionals and survivors across Europe.

➡ Click here or use the QR-code on the right to fill out the European Map form.

Do you want to contribute?

Is your country or LTFU care center not yet represented on the map? Is any information about your country or LTFU care center incorrect?

Fill out the form below or write us an email at info@pancare.eu. Your input helps us to create a more accurate and inclusive resource for healthcare professionals and survivors across Europe.

➡ Click here to fill out the European Map form.

European map form

Disclaimer

PanCare strives to provide accurate and complete information that is up-to-date. No warranty or representation, expressed or implied, is made concerning the accuracy, reliability, completeness, relevance, or timeliness of this information.

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.

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In Austria, it depends on the clinic when follow-up care starts.
Some clinics start follow-up care directly after treatment / diagnosis or within the first year. Other clinics start 5 years or 5-10 years after treatment / diagnosis.

In Belgium, it depends on the clinic when follow-up care starts.
Some clinics start follow-up care directly after treatment / diagnosis or within the first year. Other clinics start 5 years after treatment / diagnosis.

In Bosnia and Herzegovina, follow-up care starts directly after the end of treatment or within the first year after end of treatment.

In Cyprus, follow-up care starts 2 years after treatment / diagnosis.

In Czechia, follow-up care starts directly after the end of treatment or within the first year after end of treatment.

In Denmark, the start of LTFU care depends on the clinic. Some clinics start directly after treatment / diagnosis or within the first year. Others start 5 years after end of treatment.

In Finland, the start of LTFU care depends on the clinic. Some LTFU care centers start directly after diagnosis, while other start 2-5 years after cancer treatment/diagnosis. Some clinics only start LTFU care when survivors reach 16-18 years.

In France, it depends on the clinic when follow-up care starts.
Some clinics start follow-up care directly after treatment / diagnosis or within the first year. Other clinics start 5 years after treatment / diagnosis.

In Germany, it depends on the clinic when follow-up care starts.
Some clinics start follow-up care directly after treatment / diagnosis or within the first year. Other clinics start 2-5 years after treatment / diagnosis. For other clinics, it depends on the original diagnosis and treatment.

In Greece, follow-up care starts 5 years after treatment / diagnosis.

In Hungary, follow-up care starts directly after treatment / diagnosis or within the first year

In Iceland, follow-up care starts 2 years after end of treatment

In Italy, follow-up care starts 2 years after end of treatment.

In Lithuania, follow-up care starts 5 years after diagnosis.

In the Netherlands, it depends on the clinic when follow-up care starts.
Some clinics start follow-up care directly after treatment / diagnosis or within the first year. Other clinics start 5 years after treatment / diagnosis.

In Portugal, follow-up care starts directly after treatment / diagnosis or within the first year.

In Slovenia, follow-up care starts 5 years after end of treatment

In Spain, it depends on the clinic when follow-up care starts.

In Sweden, the start of LTFU care depends on the clinic. Some clinics start direclty after end of treatment or within the first year after treatment. Other clinics start LTFU care 5-10 years after treatment / diagnosis

In Switzerland, it depends on the clinic when follow-up care starts.
Some clinics only see survivors that are older than 18 years. Other clinics start LTFU care 2 years after end of treatment.

In Turkey, LTFU care starts directly after treatment / diagnosis or within the first year

In the UK, it depends on the clinic when follow-up care starts.
Some clinics start follow-up care directly after treatment / diagnosis or within the first year. Other clinics start 2-5 years after treatment / diagnosis.

In Austria, the length of LTFU care depends on the clinic.

Some clinics provide LTFU care until the survivor reaches approximately 18 years or until at least 5 years after diagnosis / treatment. For other clinics, the length of follow-up care depends on the original diagnosis and/or treatment. Other clinics provide lifelong LTFU care, independent of the survivor’s age and time since diagnosis/treatment

In Belgium, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

In Bosnia and Herzegovina, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

In Czechia, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

In Denmark, LTFU care is offered until the survivor reaches 25 years.

In Finland, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

In France, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

In Germany, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

In Greece, the length of LTFU care depends on the clinic.

Some clinics provide LTFU care until the survivor reaches approximately 50 years. For other clinics, the length of follow-up care depends on the original diagnosis and/or treatment.

In Ireland, survivors are only seen once.

In Italy, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

In Lithuania, LTFU care is offered until the survivor reaches 18 years.

In the Netherlands, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

In Portugal, LTFU care is provided until survivors are 18 years old.

In Slovenia, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

In Spain, the length of LTFU care depends on the clinic.

Some clinics provide LTFU care until 5 years after diagnosis / treatment. Other clinics provide lifelong LTFU care, independent of the survivor’s age and time since diagnosis/treatment

In Sweden, the length of LTFU care depends the original diagnosis and/or treatment.

In Switzerland, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

In the UK, the length of LTFU care depends on the clinic.

Some clinics provide LTFU care until the survivor reaches approximately 18 years or 40 years. For other clinics, the length of follow-up care depends on the original diagnosis and/or treatment. Other clinics provide lifelong LTFU care, independent of the survivor’s age and time since diagnosis/treatment

In Austria, LTFU care is fully covered by health care insurance of the survivor, a national health care system or other funding.

In Belgium, the coverage of costs for LTFU care depends on the clinic.

For some clinics, LTFU care is fully covered by health care insurance of the survivor, a national health care system or other funding. For other clinics, LTFU care is partially covered by health care insurance of the survivor and partially by the hospital and by the survivors.

In Croatia, LTFU care is fully covered by health care insurance of the survivor/a national health care system or other funding.

In Czechia, the medical care is covered by the healthcare insurance, while psychological and nutritional care are partially or fully covered by charity funding secured by the LTFU clinic staff.

In Denmark, the cost coverage of LTFU care depends on the clinic. In some clinics, LTFU care is fully covered by health care insurance of the survivor/a national health care system or other funding. In other clinics, the LTFU care service cover the costs of the visits.

In Finland, the cost coverage of LTFU care depends on the clinic, but is mostly fully covered by health care insurance of the survivor/a national health care system or other funding

In France, the coverage of costs for LTFU care depends on the clinic.

In Greece, the cost coverage of LTFU care depends on the clinic

In Hungary, LTFU care is fully covered by health care insurance of the survivor/a national health care system or other funding

In Iceland, LTFU care is partially covered by health care insurance and partly by survivor.

In Ireland, LTFU care is fully covered by health care insurance of the survivor, a national health care system or other funding.

In Italy, LTFU care is fully covered by health care insurance of the survivor, a national health care system or other funding.

In Lithuania, LTFU care is fully covered by health care insurance of the survivor, a national health care system or other funding.

In the Netherlands, the coverage of costs for LTFU care depends on the clinic.

In Portugal, LTFU care is fully covered by health care insurance of the survivor, a national health care system or other funding.

In Slovenia, LTFU care is fully covered by health care insurance of the survivor, a national health care system or other funding.

In Spain, the cost coverage of LTFU care depends on the clinic, but is either partially or fully covered by health care insurance of the survivor/a national health care system or other funding.

In Sweden, the cost coverage of LTFU care depends on the clinic, mostly fully covered by health care insurance of the survivor/a national health care system or other funding.

In Switzerland, the cost coverage of LTFU care depends on the clinic, but LTFU care is either paritally or fully covered by health care insurance

In Turkey, LTFU care is fully covered by health care insurance of the survivor/a national health care system or other funding.

In the UK, the cost coverage of LTFU care depends on the clinic, but LTFU care is mostly fully covered by health care insurance of the survivor/a national health care system (the NHS).

In Austria, the availability of peer-to-peer support depends on the clinic.

In Belgium, the follow-up care services do not provide peer-to-peer support.

In Bosnia and Herzegovina, the follow-up care services provide peer-to-peer support.

In Croatia, the follow-up care services do not provide peer-to-peer support.

In Czechia, the follow-up care services provide peer-to-peer support.

In Denmark, the availability of peer-to-peer support depends on the clinic.

In Finland, the availability of peer-to-peer support depends on the clinic.

In France, the follow-up care services do not provide peer-to-peer support.

In Germany, the follow-up care services provide peer-to-peer support.

In Greece, the follow-up care services provide peer-to-peer support.

In Hungary, the follow-up care services provide peer-to-peer support.

In Iceland, the follow-up care service does not provide peer-to-peer support.

In Ireland, the follow-up care services do not provide peer-to-peer support.

In Italy, the availability of peer-to-peer support depends on the clinic.

In Lithuania, the follow-up care services do not provide peer-to-peer support.

In Netherlands, the follow-up care services provide peer-to-peer support.

In Slovenia, the follow-up care services provide peer-to-peer support.

In Spain, the availability of peer-to-peer support depends on the clinic, but it most clinics there is peer-to-peer support available.

In Sweden, the availability of peer-to-peer support depends on the clinic.

In Switzerland, the follow-up care services provide peer-to-peer support.

In Turkey, the follow-up care services do not provide peer-to-peer support.

In the UK, the availability of peer-to-peer support depends on the clinic.

AUSTRIA

Is there LTFU care available?
Yes

How is LTFU care organised?
Regional; Based on type of cancer diagnosis / treatment history

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Depends on clinic. Some clinics start follow-up care directly after treatment / diagnosis or within the first year. Other clinics start 5 years or 5-10 years after treatment / diagnosis.

For what period is LTFU care provided to survivors?
Depends on clinic. Some clinics provide LTFU care until the survivor reaches approximately 18 years or until at least 5 years after diagnosis / treatment. For other clinics, the length of follow-up care depends on the original diagnosis and/or treatment. Other clinics provide lifelong LTFU care, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often; Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psychosocial wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A regional survivorship care programme; A national guideline; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Depends on clinic

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Depends on clinic

BELGIUM

Is there LTFU care available?
Yes

How is LTFU care organised?
Depends on clinic

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Depends on clinic, but mostly 5 years after end of treatment

For what period is LTFU care provided to survivors?
Depends on clinic, but mostly survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Depends on clinic

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
No

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
No

BOSNIA AND HERZEGOVINA

Is there LTFU care available?
Yes

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after end of treatment or within the first year

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
No

What is the provided LTFU care based upon?
Knowledge about specific late effects; European PanCare/PanCareFollowUp guidelines

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

CROATIA

Is there LTFU care available?
Yes

How is LTFU care organised?
Depends on clinic

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Up to 20 years after end of treatment

For what period is LTFU care provided to survivors?
Up to 20 years after end of treatment

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often

Which facilities are available to carry out LTFU-care?
Cardiology; Radiology; Gynaecology; Neurology; Laboratory; Dietary support; Facilities available only for survivors up to 19, otherwise referred to adult subspecialists

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects;
Other

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
No

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

CYPRUS

Is there LTFU care available?
Yes

How many years after cancer treatment/diagnosis does any type of follow-up care start?
2 years after cancer treatment/diagnosis

CZECHIA

Is there LTFU care available?
Yes

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Depends on clinic

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after end of treatment or within the first year

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Medical care covered by health care insurance, psychological and nutritional care partially or fully covered from charity funding secured by the LTFU clinic staff.

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

DENMARK

Is there LTFU care available?
Yes

How is LTFU care organised?
Regional; Based on type of cancer diagnosis / treatment history; Based on specific late effects

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Depends on clinic. Some clinics start directly after treatment / diagnosis or within the first year. Others start 5 years after end of treatment.

For what period is LTFU care provided to survivors?
Depends on clinic. Some clinics provide LTFU care until the survivor reaches 25 years. Other clinics provide LTFU care until 5 years after end of treatment.

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Pulmonology
Radiology; ENT; Ophthalmology; Endocrinology; Gynaecology; Neurology; Laboratory; Neuropsychological service; Inpatient rehabilitation; Physical therapy; Occupational therapy; Speech therapy; Dietary support

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psychosocial wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes. a paediatric oncologist/haematologist, a clinical nurse specialist/senior nurse or an advanced practice provider (e.g. nurse practitioner, physician’s assistant)

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Depends on clinic. In some clinics, LTFU care is fully covered by health care insurance of the survivor/a national health care system or other funding. In other clinics, the LTFU care service cover the costs of the visits.

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A national survivorship care programme; A national guideline; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Depends on clinic

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

FINLAND

Is there LTFU care available?
Yes

How is LTFU care organised?
Depends on clinic, but mostly national

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Depends on clinic. Some LTFU care centers start directly after diagnosis, while other start 2-5 years after cancer treatment/diagnosis. Some clinics only start LTFU care when survivors reach 16-18 years.

For what period is LTFU care provided to survivors?
Depends on clinic. Some LTFU care centers offer survivorship care lifelong, independent of the survivor’s age and time since diagnosis/treatment. Other LTFU care centers offer LTFU care until survivors reach approximately 40 years.

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

What does the provided LTFU care entail?
Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, mostly a clinical nurse specialist/senior nurse/nurse but depends on clinic

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Depends on clinic, but mostly fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
Depends on clinic, but mostly there is a national survivorship care programme, the Europen PanCare/PanCareFollowUp guidelines and the International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Depends on clinic, but mostly no

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

FRANCE

Is there LTFU care available?
Yes

How is LTFU care organised?
National; Regional; Based on type of cancer diagnosis / treatment history
Based on specific late effects

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Pulmonology
Radiology; ENT; Ophthalmology; Endocrinology; Gynaecology; Neurology; Laboratory; Psychosocial service for survivors and close ones; Neuropsychological service; Inpatient rehabilitation; Physical therapy; Occupational therapy; Speech therapy; Dietary support; Sports & movement facility

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psychosocial wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects
Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Depends on clinic. For some clinics, LTFU care is fully covered by health care insurance of the survivor, a national health care system or other funding. For other clinics, LTFU care is partially covered by health care insurance of the survivor.

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A regional survivorship care programme; A national survivorship care programme; A national guideline; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer); Other (PENTEC, COG)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
No

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

GERMANY

Is there LTFU care available?
Yes

How is LTFU care organised?
National; Regional

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Pulmonology; Laboratory; Psychosocial service for survivors and close ones

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes. a medical oncologist/haematologist

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A national survivorship care programme; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

GREECE

Is there LTFU care available?
Yes

How is LTFU care organised?
Regional; Based on type of cancer diagnosis / treatment history

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after treatment

For what period is LTFU care provided to survivors?
Depends on clinic. Some clinics provide LTFU care until the survivor reaches approximately 25-50 years. For other clinics, the length of follow-up care depends on the original diagnosis and/or treatment.

At what frequency are follow-up care consultations provided to a survivor?
Depends on clinic, but mostly depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psychosocial wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Depends on clinic

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A regional survivorship care programme; A regional guideline; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

HUNGARY

Is there LTFU care available?
Yes

How is LTFU care organised?
Depends on clinic, national or regional

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Direclty after treatment or within the first year after treatment

For what period is LTFU care provided to survivors?
Until the survivor reaches 18 years and/or a minimum of 5 years of follow-up care

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Pulmonology; Radiology; Ophthalmology; Endocrinology; Gynaecology; Neurology; Laboratory; Psychosocial service for survivors and close ones; Neuropsychological service; Inpatient rehabilitation; Physical therapy; Dietary support; Genetic and fertility counselling

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, a paediatric oncologist/haematologist and/or a clinical nurse specialist/senior nurse/nurse

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; A national survivorship care programme; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

ICELAND

Is there LTFU care available?
Yes

How is LTFU care organised?
National

How many years after cancer treatment/diagnosis does any type of follow-up care start?
2 years after end of treatment

For what period is LTFU care provided to survivors?
Until the survivor reaches 25-30 years and/or 5-10 years after end of treatment. If necessary, some survivors are seen longer

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Pulmonology; Radiology; ENT; Ophthalmology; Endocrinology; Gynaecology; Neurology; Laboratory; Psychosocial service for survivors and close ones; Neuropsychological service; Inpatient rehabilitation; Physical therapy; Occupational therapy; Speech therapy; Dietary support; Sports & movement facility. All of these services are available in the LTFU care center but survivors may also be referred to healthcare professionals outside of the clinic, depending on their situation.

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, a Paediatric oncologist/haematologist and/or a clinical nurse specialist/senior nurse/nurse

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Partially covered by health care insurance and partly by survivor

What is the provided LTFU care based upon?
General knowledge on LTFU care; A national guideline; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
No

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

IRELAND

Is there LTFU care available?
Yes

How is LTFU care organised?
Based on type of cancer diagnosis / treatment history

For what period is LTFU care provided to survivors?
Survivors are only seen once

At what frequency are follow-up care consultations provided to a survivor?
every 5 years

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Ophthalmology; Gynaecology; Neurology; Laboratory; Psychosocial service for survivors and close ones; Physical therapy; Occupational therapy; Sports & movement facility

What does the provided LTFU care entail?
Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
A regional guideline

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
No

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

ITALY

Is there LTFU care available?
Yes

How is LTFU care organised?
Depends on clinic

How many years after cancer treatment/diagnosis does any type of follow-up care start?
2 years after end of treatment

For what period is LTFU care provided to survivors?
Depends on clinic, mostly survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Depends on clinic. In some LTFU care centers, survivors have visits once a year or more often. In other clinics, it depends on the individual care plan.

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, a (medical) oncologist/haematologist or a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A national survivorship care programme; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Depends on clinic

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Depends on clinic

LITHUANIA

Is there LTFU care available?
Yes

How is LTFU care organised?
Based on type of cancer diagnosis / treatment history

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after diagnosis

For what period is LTFU care provided to survivors?
Until survivors reach 18 years

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

NETHERLANDS

Is there LTFU care available?
Yes

How is LTFU care organised?
National; Regional

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan
Other (and sometimes at the survivors request)

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Yes, a medical oncologist/haematologist; a paediatric oncologist/haematologist

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

NORWAY

Is there LTFU care available?
Yes

PORTUGAL

Is there LTFU care available?
Yes

How is LTFU care organised?
Regional

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
Until the survivor reaches 18 years

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Pulmonology; Radiology; Ophthalmology; Endocrinology; Gynaecology; Neurology; Laboratory; Neuropsychological service; Inpatient rehabilitation; Physical therapy; Occupational therapy; Speech therapy; Dietary support

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
No

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
The LTFU care service

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

RUSSIA

Is there LTFU care available?
Yes

How is LTFU care organised?
Regional

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Partially covered by health care insurance and partly by survivor

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
No

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

SLOVAKIA

Is there LTFU care available?
Yes

SLOVENIA

Is there LTFU care available?
Yes

How is LTFU care organised?
National

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after end of treatment

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan ; Varying: depending on the survivors request, also outside the regular appointments

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Yes, a radiation oncologist or a (medical) oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A national survivorship care programme; a national guideline; There is a national reference center; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

SPAIN

Is there LTFU care available?
Yes

How is LTFU care organised?
Depends on clinic

For what period is LTFU care provided to survivors?
Depends on clinic. Some clinics provide LTFU care until 5 years after diagnosis / treatment, while other clinics provide LTFU care until survivors reach 18 years. Some LTFU care centers provide lifelong LTFU care, independent of the survivor’s age and time since diagnosis/treatment.

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often; Varying: depending on the care plan

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Yes, mostly a paediatric oncologist/haematologist but depends on clinic.

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Depends on clinic, but either partially or fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects ; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Depends on clinic, but mostly yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

SWEDEN

Is there LTFU care available?
Yes

How is LTFU care organised?
Regional

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Depends on clinic. Some clinics start direclty after end of treatment or within the first year after treatment. Other clinics start LTFU care 5-10 years after treatment / diagnosis

For what period is LTFU care provided to survivors?
Sometimes survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment or sometimes it depends on diagnosis and/or treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psychosocial wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Yes, usually a (medical) oncologist/haematologist, a paediatric oncologist/haematologist or a clinical nurse specialist/senior nurse

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Depends on clinic, mostly fully covered by health care insurance of the survivor/a national health care system or other funding

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Depends on clinic

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

SWITZERLAND

Is there LTFU care available?
Yes

How is LTFU care organised?
Depends on clinic, but mostly regional and based on type of cancer diagnosis / treatment history

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Depends on clinic. Some clinics only see survivors that are older than 18 years. Other clinics start LTFU care 0-2 years after end of treatment.

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Depends on clinic, but mostly once a year or more ofte, depending on the care plan or at survivors request

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Depends on clinic, but either paritally or fully covered by health care insurance

What is the provided LTFU care based upon?
Depends on clinic, but mostly the international ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

TURKEY

Is there LTFU care available?
Yes

How is LTFU care organised?
Depends on clinic, but mostly regional

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Direclty after end of treatment or within the first year after treatment

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors and if so what does this person do?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
No

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
No

UNITED KINGDOM

Is there LTFU care available?
Yes

How is LTFU care organised?
Depends on clinic, but mostly regional

For what period is LTFU care provided to survivors?
Depends on clinic, but mostly survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Depends on clinic. Some clinics provide consultations once a year or more often. At other clinics, it depends on the care plan or the service is offered at capacity so the time between appointments can be less frequent than desired and varies by need

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psychosocial wellbeing); Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Yes. a clinical nurse specialist/senior nurse or a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Depends on clinic, but LTFU care is mostly fully covered by health care insurance of the survivor/a national health care system (the NHS).

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A national guideline; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Depends on clinic

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Depends on clinic

MEDICAL UNIVERSITY OF VIENNA (VIENNA, AUSTRIA)
Medizinische Universität Wien (Österreich)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
Depends on initial diagnosis/treatment; Until the survivor reaches approximately 18 years

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the profession of the HCP; Varying: depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
The LTFU care service

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

ST. ANNA CHILDREN’S HOSPITAL (ST. ANNA KINDERKREBSFORSCHUNG) (VIENNA, AUSTRIA)
St. Anna Kinderspital – St. Anna Kinderkrebsforschung (Wien, Österreich)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after treatment / diagnosis

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often; Varying: depending on the care plan; Varying: depending on the profession of the HCP; Varying: depending on the survivors request, also outside the regular appointments

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Radiology; Endocrinology; Gynaecology; Laboratory; Psychosocial service for survivors and close ones; Neuropsychological service; Inpatient rehabilitation; Physical therapy; Occupational therapy; Speech therapy

What does the provided LTFU care entail?
Information about research about late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist or an administration officer working inside the health care clinic

INTERDISCIPLINARY ONCOLOGIAL FOLLOW-UP CLINIC (VIENNA, AUSTRIA)
Interdisziplinäre Onkologische Nachsorge-Ambulanz (Wien, Österreich)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after treatment / diagnosis

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a (Medical) oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

MEDICAL UNIVERSITY OF GRAZ (GRAZ, AUSTRIA)
Medizinische Universität Graz, Universitätsklinik für Kinder- und Jugendheilkunde (Österreich)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a (medical) oncologist/haematologist or a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A regional survivorship care programme; A national survivorship care programme; A regional guideline; A national guideline; There is a national reference center; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

KEPLER UNIVERSITY HOSPITAL (LINZ, AUSTRIA)
Kepler Universitätsklinikum, Universitätsklinik für Kinder- und Jugendheilkunde (Linz, Österreich)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
At least until the survivor reaches 18 years; at least until 5 years after treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A regional survivorship care programme; Tumor-specific follow-up schedule

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

UNIVERSITY HOSPTIALS LEUVEN (LEUVEN, BELGIUM)
Universitair Ziekenhuis Leuven (België/Belgique)

no data available yet

CLINIQUES UNIVERSITAIRES SAINT-LUC (BRUSSLES, BELGIUM)
Cliniques universitaires Saint-Luc (Brussel/Bruxelles, België/Belgique)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often; Every 2 years; Every 3 years; Every 4 years; Every 5 years; Varying: depending on the care plan

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A regional survivorship care programme; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
No

HOSPITAL DE LA CITADELLE (LIÈGE, BELGIUM)
Hôpital de la Citadelle (Brussel/Bruxelles, België/Belgique)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after treatment / diagnosis

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Between 1-3 years depending on the LTFU recommendations and adapted to the survivor request

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist, a clinical nurse specialist/senior nurse/nurse, an advanced practice provider (e.g. nurse practitioner, physician’s assistant, an administration officer working inside the health care clinic or a general practitioner

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Administration officer, clinical nurse and psychologist are covered by the hospital. Consultations are covered by healthcare insurance and survivor.

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
No

GHENT UNIVERSITY HOSPITAL (GHENT, BELGIUM)
Universitair Ziekenhuis Gent (Brussel/Bruxelles, België/Belgique)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after end of treatment

For what period is LTFU care provided to survivors?
Survivors are only seen once or until 5 years have passed since the treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan or depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Partially covered by health care insurance and partly by survivor

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

UNIVERSITY CLINICAL CENTER SARAJEVO (SARAJEVO, BOSNIA AND HERZEGOVINA)
Klinički centar Univerziteta Sarajevu (Sarajevu, Bosna i Hercegovina / Босна и Херцеговина)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after the end of treatment or within the first year after end of treatment

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices

Is there a dedicated HCP who directs the LTFU care of survivors?
No

What is the provided LTFU care based upon?
Knowledge about specific late effects; European PanCare/PanCareFollowUp guidelines

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

CHILDREN’S HOSPITAL ZAGREB, DEPARTMENT OF PEDIATRIC ONCOLOGY AND HEMATOLOGY (ZAGREB, CROATIA)

Klinika za dječje bolesti Zagreb, Zavod za pedijatrijsku hematologiju i onkologiju (Zagreb, Hrvatska)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Up to 20 years after end of treatment

For what period is LTFU care provided to survivors?
Up to 20 years after end of treatment

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often

Which facilities are available to carry out LTFU-care?
Cardiology; Radiology; Gynaecology; Neurology; Laboratory; Dietary support. These facilities are available only for survivors up to 19, otherwise they are referred to adult specialists

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

CHILDREN’S ONCOLOGY CLINIC OF BRNO (BRNO, CZECHIA)
Kliniky dětské onkologie FN Brno (Brno, Česká republika)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after the end of treatment or within the first year after end of treatment

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

KUOPIO UNIVERSITY HOSPITAL (KUOPIO, FINLAND)
Kuopion yliopistollinen sairaala (Kuopio, Suomi)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after diagnosis or within the first year after diagnosis

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

What does the provided LTFU care entail?
Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a (medical) oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
No

OULU UNIVERSITY HOSPITAL (OULU, FINLAND)
Oulun yliopistollinen sairaala (Oulu, Suomi)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after end of treatment or when patients is at age of 16-18.

For what period is LTFU care provided to survivors?
Until the survivor reaches 39 years

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, an advanced practice provider (e.g. nurse practitioner, physician’s assistant

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A national guideline ; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

CANCER CENTRE HELSINKI (HELSINKI, FINLAND)
Syöpäkeskus Helsinki (Helsinki, Suomi)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after diagnosis or within the first year after diagnosis

For what period is LTFU care provided to survivors?
Until the survivor reaches 40 years

At what frequency are follow-up care consultations provided to a survivor?
Every 5 years

Which facilities are available to carry out LTFU-care?
Cardiology; Endocrinology; Laboratory; Dietary support

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a clinical nurse specialist/senior nurse/nurse

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

TURKU UNIVERSITY HOSPITAL (TURKU, FINLAND)
Turun yliopistollinen keskussairaala (Turku, Suomi)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
2-5 years after end of treatment

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist or an advanced practice provider (e.g. nurse practitioner, physician’s assistant)

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system

What is the provided LTFU care based upon?
Knowledge about specific late effects; A national survivorship care programme; A national guideline; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

LILLE OSCAR LAMBRET (LILLE, FRANCE)
Lille Oscar Lambret (Lille, France)

no data available

UNIVERSITY HOSPITAL OF ROUEN (ROUEN, FRANCE)
Centre Hospitalier Universitaire de Rouen (Rouen, France)

no data available

UNIVERSITY HOSPITAL OF CAEN (CAEN, FRANCE)
Centre Hospitalier Universitaire de Caen (Caen, France)

no data available

Robert Debré Hospital (PARIS, FRANCE)
HÔPITAL ROBERT DEBRÉ (PARIS, FRANCE)

no data available

SAINT-LOUIS HOSPITAL (PARIS, FRANCE)
Hôpital Saint Louis (Paris, France)

no data available

ARMAND TROUSSEAU HOSPITAL (PARIS, FRANCE)
Hôpital Armand Trousseau (Paris, France)

no data available

CURIE INSITUTE (PARIS, FRANCE)
Institut Curie (Paris, France)

no data available

GUSTAVE ROUSSY INSTITUTE (PARIS, FRANCE)
Institut Gustave Roussy (Paris, France)

no data available

UNIVERSITY HOSPITAL OF NANCY (NANCY, FRANCE)
Centre Hospitalier Universitaire de Nancy (Nancy, France)

no data available

LORRAINE CANCER INSTITUTE (NANCY, FRANCE)
Institut de Cancérologie de Lorraine (Nancy, France)

no data available

UNIVERSITY HOSPITAL OF STRASBOURG HAUTEPIERRE (STRASBOURG, FRANCE)
University Hospital of Strasbourg Hautepierre (Strasbourg, France)

no data available

UNIVERSITY HOSPITAL OF RENNES – SOUTH HOSPITAL (RENNES, FRANCE
Centre Hospitalier Universitaire de Rennes – Hôpital Sud (Rennes, France)

no data available

UNIVERSITY HOSPITAL OF ANGERS (ANGERS, FRANCE)
Centre Hospitalier Universitaire d’Angers (Angers, France)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after treatment / diagnosis

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments; Depending of the organisation of the health care professionals around the patient

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a general practitioner

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered? Partially covered by healthcare insurance, by the institution and by research projects

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

UNIVERSITY HOSPITAL OF NANTES (NANTES, FRANCE)
Centre Hospitalier Universitaire de Nantes (Nantes, France)

no data available

UNIVERSITY HOSPITAL OF POITIERS (POITIERS, FRANCE)
Centre Hospitalier Universitaire de Poitiers (Poitiers, France)

no data available

UNIVERSITY HOSPITAL OF BORDEAUX (BORDEAUX, FRANCE)
Centre Hospitalier Universitaire de Bordeaux (Bordeaux, France)

no data available

UNIVERSITY HOSPITAL OF TOULOUSE (TOULOUSE, FRANCE)
Centre Hospitalier Universitaire de Toulouse hopital des enfants (Toulouse, France)

no data available

CLAUDIUS REGAUD INSTITUTE (TOULOUSE, FRANCE)
Institute Claudius Regaud (Toulouse, France)

no data available

UNIVERSITY HOSPITAL OF DIJON (DIJON, FRANCE)
Centre Hospitalier Universitaire de Dijon (Dijon, France)

no data available

UNIVERSITY HOSPITAL OF BESANÇON (BESANÇON, FRANCE)
Centre Hospitalier Universitaire de Besançon (Besançon, France)

no data available

UNIVERSITY HOSPITAL OF CLERMONT-FERRAND (CLERMONT-FERRAND, FRANCE)
Centre Hospitalier Universitaire de Clermont-Ferrand (Clermont-Ferrand, France)

no data available

UNIVERSITY HOSPITAL OF ST. ETIENNE (ST. ETIENNE, FRANCE)
Centre Hospitalier Universitaire de St. Etienne (St. Etienne, France)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A regional survivorship care programme; A national survivorship care programme; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

LYON PEDIATRIC HEMATOLOGY AND ONCOLOGY INSTITUTE (LYON, FRANCE)
Institut d’Hématologie et d’Oncologie Pédiatrique (IHOPE) (Lyon, France)

no data available

UNIVERSITY HOSPITAL OF GRENOBLE (GRENOBLE, FRANCE)
Centre Hospitalier Universitaire de Grenoble (Grenoble, France)

no data available

UNIVERSITY HOSPITAL OF MONTPELLIER A. DE VILLENEUVE (MONTPELLIER, FRANCE)
Centre Hospitalier Universitaire de Montpellier A. de Villeneuve (Montpellier, France)

no data available

LA TIMONE HOSPITAL MARSEILLE (MARSEILLE, FRANCE)
Hôpital la Timone Marseille (Marseille, France)

no data available

ANTOINE LACASSAGNE CENTER (NICE, FRANCE)
Centre Antoine Lacassagne (Nice, France)

no data available

UNIVERSITY HOSPITAL OF NICE (NICE, FRANCE)
Centre Hospitalier Universitaire de Nice (Nice, France)

no data available

ESSEN UNIVERSITY HOSPITAL (ESSEN, GERMANY)
Universitätsklinikum Essen (Essen, Deutschland)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
2 years after treatment / diagnosis

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing)

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a (medical) oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
The LTFU care service

What is the provided LTFU care based upon?
General knowledge on LTFU care

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

SURVIVORS CONSULTATIONS SANKT AUGUSTIN (SANKT AUGUSTIN, GERMANY)
Survivor Sprechstunde Sankt Augustin (Sankt Augustin, Deutschland) –> no website yet, contact via survivor@ekkk.de

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan or depending on the survivors request, also outside the regular appointments

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Laboratory; Psychosocial service for survivors and close ones

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Partially covered by health care insurance and partly by survivor and donations

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

INITIATIVE KREBSKRANKE KINDER MÜNCHEN E. V. – KONA (MUNICH, GERMANY)
Initiative Krebskranke Kinder München e. V. – KONA (München, Deutschland)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Dependent on diagnosis and treatment duration

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Depends on diagnosis

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Laboratory; Psychosocial service for survivors and close ones; Inpatient rehabilitation

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a (medical) oncologist/haematologist or an administration officer working inside the health care clinic

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Donations and healthcare insurance

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A regional survivorship care programme; A national survivorship care programme; A national guideline; There is a national reference center; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

REHABILITATIONSKLINIK KATHARINENHÖHE (FREIBURG, GERMANY)
Rehabilitationsklinik Katharinenhöhe (Freiburg, Deutschland)

no data available yet

LATE EFFECTS CLINIC UNIVERSITY HOSPITAL SCHLESWIG-HOLSTEIN (LÜBECK, GERMANY)
Langzeitnachsorge am Universitätsklinikum Schleswig-Holstein (Lübeck, Deutschland)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after end of treatment

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Pulmonology; Radiology; ENT; Endocrinology; Neurology; Laboratory; Psychosocial service for survivors and close ones; Neuropsychological service; Physical therapy; Occupational therapy; Sports & movement facility

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
A national survivorship care programme; There is a national reference center; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

UNIVERSITY HOSPITAL OF HERAKLION, DEPARTMENT OF PEDIATRIC HEMATOLOGY-ONCOLOGY (HERAKLION, GREECE)
Κλινική Αιματολογίας-Ογκολογίας Παίδων, Πανεπιστημιακό Νοσοκομείο Ηρακλείου (Ηράκλειο, Ελλάδα)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after end of treatment

For what period is LTFU care provided to survivors?
Until the survivor reaches 25 years

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often and depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

CHILDRENS HOSPITAL AGIA SOFIA (ATHENS, GREECE)
Νοσοκομείου των Παίδων “Η ΑΓΙΑ ΣΟΦΙΑ”

no data available yet

MITERA CHILDRENS HOSPITAL (ATHENS, GREECE)
Παίδων ΜΗΤΕΡΑ (Αθήνα, Ελλάδα)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after treatment / diagnosis

For what period is LTFU care provided to survivors?
Depends on initial diagnosis/treatment; Until the survivor reaches approximately 50 years

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Partially covered by health care insurance and partly by survivor

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

UNIVERSITY OF DEBRECEN, DEPARTMENT OF PAEDIATRICS (BUDAPEST, HUNGARY)
Debreceni Egyetem Gyermekgyógyászati Klinika (Budapest, Magyarország)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
LTFU care starts at the active anti-cancer treatment

For what period is LTFU care provided to survivors?
LTFU care is provided until the survivor reaches 18 years or for a minimum of 5 years after end of treatment

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist or an advanced practice provider (e.g. nurse practitioner, physician’s assistant)

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

CHILDREN’S HOSPITAL ICELAND, CENTRE FOR LATE EFFECTS OF CHILDHOOD CANCER (REYKJAVÍK, ICELAND)
Miðstöð síðbúinna afleiðinga krabbameina – Barnaspítali (Reykjavík, Ísland)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
2 years after end of treatment

For what period is LTFU care provided to survivors?
Until the survivor reaches 25-30 years and/or 5-10 years after end of treatment. If necessary, some survivors are seen longer

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a Paediatric oncologist/haematologist and/or a clinical nurse specialist/senior nurse/nurse

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Partially covered by health care insurance and partly by survivor

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

UNIVERSITY HOSPITAL OF PADOVA (PADOVA, ITALY)
Azienda Ospedale – Università Padova (Padova, Italia)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
2 years after end of treatment

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Pulmonology; Radiology; Ophthalmology; Endocrinology; Gynaecology; Neurology; Laboratory; Psychosocial service for survivors and close ones; Inpatient rehabilitation; Physical therapy; Occupational therapy; Dietary support; Sports & movement facility

What does the provided LTFU care entail?
Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; A national survivorship care programme; A national guideline; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

NATIONAL CANCER INSTITUTE OF MILAN (MILAN, ITALY)
Fondazione Irccs Istituto Nazionale dei Tumori (Milano, Italia)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
2 years after end of treatment

For what period is LTFU care provided to survivors?
Until 5 years have passed since the diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often

Is there a dedicated HCP who directs the LTFU care of survivors?
No

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; European PanCare/PanCareFollowUp guidelines

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
No

SANTOBONO-PAUSILIPON CHILDRENS HOSPITAL (NAPLES, ITALY)
Osedale Pediatrico Santobono Pausilipon (Napoli, Italia)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after diagnosis

For what period is LTFU care provided to survivors?
Until the survivor reaches 18 years or 10 years after diagnosis for people over 18 years-old

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a (medical) oncologist/haematologist or a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
Knowledge about specific late effects; A national survivorship care programme; There is a national reference center; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

UNIVERSITY HOSPITAL OF TURIN (TORINO, ITALY)
Azienda Ospedaliero-Universitaria Città della Salute e della Scienza di Torino (Torino, Italia)

no data available yet

IRCCS GASLINI HOSPITAL (GENOA, ITALY)
Istituto Giannina Gaslini (Genova, Italia)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
2 years after treatment / diagnosis

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Universal system in Italy for screening and charities for research

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
No

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
No

VILNIUS UNIVERSITY HOSPITAL SANTAROS KLINIKOS (VILNIUS, LITHUANIA)
Vilniaus universiteto ligoninė Santaros klinikos (Vilnius, Lietuva)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after diagnosis

For what period is LTFU care provided to survivors?
Until survivors reach 18 years

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

PRINCESS MÁXIMA CENTER (UTRECHT, THE NETHERLANDS)
Prinses Máxima Centrum (Utrecht, Nederland)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year or 5 years after treatment / diagnosis

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Sometimes at the survivors request

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects; Sometimes treatment of occuring late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a (medical) oncologist/haematologist, a paediatric oncologist/haematologist, a clinical nurse specialist/senior nurse/nurse

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding or partially covered by health care insurance and partly by survivor

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

OSLO UNIVERSITY HOSPITAL (OSLO, NORWAY)
Oslo universitetssykehus (Oslo, Norge)

no data available yet

INSTITUTE OF ONCOLOGY LJUBLJANA (LJUBLJANA, SLOVENIA)
Onkološki Inštitut Ljubljana (Ljubljana, Slovenija)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after end of treatment

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan ; Varying: depending on the survivors request, also outside the regular appointments

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Yes, a radiation oncologist or a (medical) oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

UNIVERSITY HOSPITAL VALENCIA, PEDIATRIC ONCOLOGY AND HEMATOLOGY DEPARTMENT (VALENCIA, SPAIN)
Pediatría Hospital Clínico Universitario de Valencia (Valencia, España)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after diagnosis

For what period is LTFU care provided to survivors?
Until the survivor reaches 18 years

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
The costs of LTFU care are covered by a parent association.

What is the provided LTFU care based upon?
A national guideline; European PanCare/PanCareFollowUp guidelines

Do follow-up care services facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Do follow-up care services facilitate contact with relevant patient organisations for survivors?
Yes

UNIVERSITY HOSPITAL CENTER OF SÃO JOÃO (PORTO, PORTUGAL)
Hospital Universitário de São João (Porto, Portugal)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the survivors request, also outside the regular appointments

CENTRO HOSPITALAR E UNIVERSITÁRIO DE COIMBRA – HOSPITAL PEDIÁTRICO (COIMBRA, PORTUGAL)
Centro Hospitalar e Universitário de Coimbra – Hospital Pediátrico (Coimbra, Portugal)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
Until the survivor reaches approximately 18 years

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Pulmonology; Radiology; Ophthalmology; Endocrinology; Gynaecology; Neurology; Laboratory; Neuropsychological service; Inpatient rehabilitation; Physical therapy; Occupational therapy; Speech therapy; Dietary support

Is there a dedicated HCP who directs the LTFU care of survivors?
No

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
The LTFU care service

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

CRUCES UNIVERSITY HOSPITAL (BILBAO, SPAIN)
Hospital Universitario Cruces (Bilbao, España)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
Up to five years after the end of any treatment (first line or relapse)

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan

Is there a dedicated HCP who directs the LTFU care of survivors?
No

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

VIRGEN OF ARRIXACA UNIVERSITY CLINICAL HOSPITAL (MURCIA, SPAIN)
Hospital Clínico Universitario Virgen de la Arrixaca (Murcia, España)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects; Quality of life related of Health, individual carbon footprint

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
General knowledge on LTFU care; Knowledge about specific late effects; A regional survivorship care programme; A regional guideline; There is a national reference center; European PanCare/PanCareFollowUp guidelines; International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

LA FE UNIVERSITY AND POLYTECHNIC HOSPITAL (VALENCIA, SPAIN)
Hospital Universitari i Politècnic La Fe (Valencia, España)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
5 years after treatment / diagnosis

For what period is LTFU care provided to survivors?
Until survivor reaches 18 years; at least 5 years after diagnosis

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often; Varying: depending on the care plan

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for relapse/recurrence; Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Covered by healthcare insurance as well as private funding for psychologists and work therapists

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

SKÅNE UNIVERSITY HOSPITAL LUND (LUND, SWEDEN)

Skånes universitetssjukhus Lund (Sverige)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
0-5 years after end of treatment

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

Which facilities are available to carry out LTFU-care?
Medical screening/ testing devices; Cardiology; Pulmonology; ENT; Ophthalmology; Endocrinology; Gynaecology; Neurology; Laboratory; Psychosocial service for survivors and close ones; Neuropsychological service; Inpatient rehabilitation; Physical therapy; Occupational therapy

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a (medical) oncologist/haematologist, a paediatric oncologist/haematologist or an advanced practice provider (e.g. nurse practitioner, physician’s assistant)

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

CANCER SURVIVOR CLINIC INSELSPITAL BERN (BERN, SWIZTERLAND)
Cancer Survivor-Sprechstunde Inselspital, Universitätsspital Bern (Bern, Schwiz / Suisse / Svizzera / Svizra)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Once the survivors are 18 years old or older

For what period is LTFU care provided to survivors?
Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

At what frequency are follow-up care consultations provided to a survivor?
Once a year or more often; Every 2 years; Every 5 years; Varying: depending on the survivors request, also outside the regular appointments

What does the provided LTFU care entail?
Regular general health checks (physical wellbeing); Regular general health checks (psycho-social wellbeing); Surveillance for late effects; Information about patients treatment history (types of medicines used, types of interventions carried out) and potential late effects; Information about research about late effects; Lifestyle checks/consultation/interventions in relation to late effects; Treatment of occurring late effects; Referrals to other health care providers outside the LTFU care clinic for consultation; Referrals to other health care providers outside the LTFU care clinic for treatment of late effects

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist or a general practicioner

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Partially covered by health care insurance and partly by survivor

What is the provided LTFU care based upon?
International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer); Other: COG Long-Term Follow-Up Guidelines (current version)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

UNIVERSITY CHILDRENS HOSPITAL ZURICH (ZURICH, SWITZERLAND
Univeritäts-Kinderspital Zürich (Zürich, Schwiz / Suisse / Svizzera / Svizra)

How many years after cancer treatment/diagnosis does any type of follow-up care start?
Directly after treatment / diagnosis or within the first year

For what period is LTFU care provided to survivors?
LTFU care is provided until the age 18-22 years and depends on the time since end of treatment. After that, there is a transition to other LTFU care clinic or other health care professional (individualized approach)

At what frequency are follow-up care consultations provided to a survivor?
Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments

Is there a dedicated HCP who directs the LTFU care of survivors?
Yes, a paediatric oncologist/haematologist

Who finances the LTFU care e.g. how are the costs of visits and performed tests covered?
Fully covered by health care insurance of the survivor/a national health care system or other funding

What is the provided LTFU care based upon?
International ‘IGHG’ guideline (International Guideline Harmonization Group for late effects of childhood cancer)

Does the follow-up care service facilitate peer-to-peer support from other CAYA cancer survivors?
Yes

Does the follow-up care service facilitate contact with relevant patient organisations for survivors?
Yes

CHILDRENS HOSPITAL OF EASTERN SWITZERLAND (ST. GALLEN, SWITZERLAND)
Ostschweizer Kinderspital (St. Gallen, Schwiz / Suisse / Svizzera / Svizra)