European mapTessa Fuchs2024-09-17T13:59:28+02:00

EUROPEAN MAP OF LTFU CARE

This is the Eurpean 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 develeopd 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

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.

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

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

In Finland, follow-up care starts 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 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 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 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 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 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 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 Denmark, LTFU care is fully covered by health care insurance of the survivor, a national health care system or other funding.

In Finland, LTFU care is partially covered by health care insurance of the survivor 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 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 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 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 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 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

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

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? 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

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 clinical nurse specialist/senior nurse

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

What is the provided LTFU care based upon? Knowledge about specific late effects; A national survivorship care programme; A national guideline; 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; 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

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

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

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

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

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

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

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

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

UNITED KINGDOM

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

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? Service at capacity so time between appointments can be less frequent than desired and varies by need

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.

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? Yes

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

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

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

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

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

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

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

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

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

UNIVERSITY HOSPITAL OF SAINT-ÉTIENNE (SAINT-ÉTIENNE, FRANCE)
Centre Hospitalier Universitaire de Saint-Étienne (Saint-Étienne, France)

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

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

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

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

CHILDREN’S HOSPITAL AGIA SOFIA (ATHENS, GREECE)
Νοσοκομείου των Παίδων “Η ΑΓΙΑ ΣΟΦΙΑ” (Αθήνα, Ελλάδα)

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

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

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

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

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

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

MITERA CHILDREN’S HOSPITAL (ATHENS, GREECE)
Παίδων ΜΗΤΕΡΑ (Αθήνα, Ελλάδα)

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

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

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

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

LA FE UNIVERSITY AND POLYTECHNIC HOSPITAL (VALENCIA, SPAIN)

Hospital Universitari i Politècnic La Fe (Valencia, España)

ROYAL HOSPITAL FOR CHILDREN GLASGOW (GLASGOW, UK)

Royal Hospital for Children Glasgow (Glasgow, UK)

THE ROYAL MARSDEN NHS FOUNDATION TRUST (LONDON, UK)

The Royal Marsden NHS Foundation Trust (London, UK)

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

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