European mapTessa Fuchs2024-11-04T12:59:46+01:00

EUROPEAN MAP OF LTFU CARE

This is the European map of long-term follow-up (LTFU) care. The map shows the availability and current status of LTFU care in European countries and care centers. The map was developed within the EU-CAYAS-NET project.

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

If you cannot see the dark blue markers representing the LTFU care centers (anymore), please click in the lower left corner on LTFU care centers!

Would you like to contribute to the European Map of LTFU care and have your country and/or LTFU care center represented on the map? Click here or use the QR-code on the right to fill out the European Map form.

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

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

In Finland, follow-up care starts 2-5 years after treatment / diagnosis.

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

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

In Slovenia, follow-up care starts 3-5 years after treatment / diagnosis.

In Spain, 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 Sweden, follow-up care starts 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 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 Armenia, LTFU care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment.

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

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

In Finland, some parts of LTFU care is fully covered by health care insurance of the survivor/a national health care system or other funding. Other parts of LTFU care are partially covered by health care insurance and partly by survivor.

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

In Greece, 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 Russia, LTFU care is partially covered by health care insurance and partly by survivor

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

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

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

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

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

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

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

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

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

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

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 Russia, the follow-up care services do not 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.

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

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

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

ARMENIA

Is there LTFU care available? Yes

How is LTFU care organised? National; 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? 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

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; 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

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

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

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? Regional; Depends on clinic

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

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

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; an administration officer working inside the health care clinic; a general practitioner

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 and partially by the hospital and by the survivors.

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)

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

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

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; Dietary support; Other specialist services provided as needed (e..g. smoking cessation support, lipid profile consultations).

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.

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? 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? Directly after treatment / diagnosis or within the first year

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; Varying: depending on the care plan; Varying: depending on the survivors request, also outside the regular appointments; Other (Individual follow-up, depending on diagnose, treatment and expected late effects. From 5 years after diagnosis usually yearly until 18 years of age. After that it is individualized

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

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; 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

FINLAND

Is there LTFU care available? Yes

How is LTFU care organised? National; regional

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

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; Sports & movement facility; Social worker

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, a paediatric oncologist/haematologist, a clinical nurse specialist/senior nurse/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? 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

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)

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

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

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

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

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; Inpatient rehabilitation; Physical therapy; Occupational therapy; Sports & movement facility

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 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? 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 (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; 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? Partially covered by health care insurance and partly by 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 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

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 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

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? No

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

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

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; Dietary support

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)

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

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

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? Yes

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

NORWAY

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? 3-5 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

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; 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 radiation oncologist

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? Regional; Based on type of cancer diagnosis / treatment history; 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. 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

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

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

SWEDEN

Is there LTFU care available? Yes

How is LTFU care organised? National; Regional

How many years after cancer treatment/diagnosis does any type of follow-up care start? 5-10 years after treatment / diagnosis

For what period is LTFU care provided to survivors? Depends on diagnosis and/or treatment

At what frequency are follow-up care consultations provided to a survivor? every 5 years; 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; Pulmonology; Radiology; Ophthalmology; Endocrinology; Gynaecology; Neurology; Laboratory; Psychosocial service for survivors and close ones; 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

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

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

SWITZERLAND

Is there LTFU care available? Yes

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

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 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? Once a year or more often; Every 2 years; Every 5 years; 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; 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, a general practitioner 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? 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? Yes
Do follow-up care services facilitate contact with relevant patient organisations for survivors? Yes

UNITED KINGDOM

Is there LTFU care available? Yes

How is LTFU care organised? Regional; Based on specific late effects

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 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.

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

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; 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 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? 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? 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; 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

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 (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

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 (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

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)

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

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 (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

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

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, BRUSSELS)
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

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 (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

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, BRUSSELS)
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

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 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

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; Dietary support; Other specialist services provided as needed (e..g. smoking cessation support, lipid profile consultations)

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

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)

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

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? Survivorship care is offered lifelong, independent of the survivor’s age and time since diagnosis/treatment

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 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; Neuropsychological service; Physical therapy; Occupational therapy; Speech therapy; Dietary support; Sports & movement facility; Social worker

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 clinical nurse specialist/senior nurse/nurse, a paediatric oncologist/haematologist or an advanced practice provider (e.g. nurse practitioner, physician’s assistant)

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 SAINT-ÉTIENNE (SAINT-ÉTIENNE, FRANCE)
Centre Hospitalier Universitaire de Saint-Étienne (Saint-Étienne, 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

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 (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

ANGERS UNIVERSITY HOSPITAL CENTER (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

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 (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

partially covered by HC insurance + institution + 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

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

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

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 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

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; Dietary support

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

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 (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

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

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

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

DMITRY ROGACHEV NATIONAL MEDICAL RESEARCH CENTER OF PEDIATRIC HEMATOLOGY, ONCOLOGY AND IMMUNOLOGY (MOSCOW, RUSSIA)
НМИЦ ДГОИ им. Дмитрия Рогачева (Москва, Россия)

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

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; Speech therapy; Sports & movement facility

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; 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? No

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

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? 3-5 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

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 (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

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)

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 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

KANTONSSPITAL BASELLAND (LIESTAL, SWIZTERLAND)
Interdisziplinäre Sprechstunde für Langzeitnachsorge am Kantonsspital Baselland (Liestal, Schwiz / Suisse / Svizzera / Svizra)

How many years after cancer treatment/diagnosis does any type of follow-up care start? 2 years after end of treatment or above 18 years old

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

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

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 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? 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

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

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 (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

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

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

BRIGHTON

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

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; 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, a paediatric oncologist/haematologist, a clinical nurse specialist/senior nurse/nurse or an endocrinologist

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

ROYAL HOSPITAL FOR CHILDREN GLASGOW (GLASGOW, UK)

Royal Hospital for Children Glasgow (Glasgow, UK)

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; 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; 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 effect

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? The NHS

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

THE ROYAL MARSDEN NHS FOUNDATION TRUST (LONDON, UK)

The Royal Marsden NHS Foundation Trust (London, UK)

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

For what period is LTFU care provided to survivors? Until the survivors reach18 years; Between the ages of 18 and 25 risk assessed and shared decision making regarding future follow up.

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 a clinical nurse specialist/senior nurse/nurse

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

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

CAMBRIDGE UNIVERSITY HOSPITALS NHS FOUNDATION TRUST (CAMBRIDGE, UK)
Cambridge University Hospitals NHS Foundation Trust (Cambridge, UK)

no data available yet

NEWCASTLE HOSPITALS NHS FOUNDATION TRUST (NEWCASTLE UPON TYNE, UK)
Newcastle Hospitals NHS Foundation Trust (Newcastle upon Tyne, UK)

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 survivors are old enough to understand LTFU issues and advocate for themselves

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; Endocrinology; Neurology; Laboratory; Psychosocial service for survivors and close ones; Neuropsychological service; Occupational therapy; Dietary support

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? Yes, a paediatric oncologist/haematologist 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? The LTFU care service

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

LEEDS TEACHING HOSPITALS NHS TRUST (LEEDS, UK)
Leeds Teaching Hospitals NHS Trust (Leeds, UK)

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? As long as there are excess risks of late effects

At what frequency are follow-up care consultations provided to a survivor? Every 2 years; varies by need

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 (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 clinical nurse specialist/senior nurse/nurse

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

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