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Neurocognitive and Psychosocial Issues in childhood cancer survivors Momcilo Jankovic, WPL Fondazione MBBM, Monza Neurocognitive and Psychosocial Issues in childhood cancer survivors Momcilo Jankovic, WPL Fondazione MBBM, Monza (Italy) Belgrade, 29. 10. 2016

The Survivorship Passport • Riccardo Haupt • Silvia Caruso • Francesca Bagnasco IGG • The Survivorship Passport • Riccardo Haupt • Silvia Caruso • Francesca Bagnasco IGG • • Giulia Stabile Maurizio Ortali Davide Saraceno Roberta Amato CINECA • Sabine Karner • Anita Kienesberger ICCPO All partners of: ENCCA: WP 13 Pan. Care. Sur. Fup: WP 6 2016 Pan. Care Meeting

What should be the passport? • A template of a document to be given What should be the passport? • A template of a document to be given to the individual patient at the moment of the elective end of therapies containing cancer history and therapy information • Paper and electronic based, written in a simple way, potentially including images and other relevant medical documents. • To provide advice and guidance on patient-specific longterm follow-up of possible late effects • All languages of the EU

Why is a survivorship passport necessary? • To know the medical history • Survivors Why is a survivorship passport necessary? • To know the medical history • Survivors might be not aware or not well informed about the risks of potential late effects (or forget it) • To know what to do after end of follow-up (check list what & when & why to do) • Education about their own illness (risks, why special screenings, etc. ), optimize prevention and care • Those who understand the reasons will be more likely to continue followup care • Transfer of information • Tool for Survivors empowerment • So much information necessary? ? YES!

The survivorship passport: The prototype development (1) • Definition of list of variables (ballot) The survivorship passport: The prototype development (1) • Definition of list of variables (ballot) • Use common nomenclature (ICCC-3 and ICD-O, ATC) • Tumor - Radiotherapy site • Chemotherapy • Data base creation • Online tool for data entry and passport creation

The survivorship passport: The prototype development (2) • “Translation” into lay language of some The survivorship passport: The prototype development (2) • “Translation” into lay language of some medical terms • Linkage with clinical trials data bases to automatically collect treatment information • Linkage with guidelines of follow-up (in collaboration with Pan. Care. Sur. Fup + harmonization) • Data security and privacy issues • Implementation on a national level

General outline of the survivorship passport: Elective end of therapies General outline of the survivorship passport: Elective end of therapies

2 nd Elective end of therapies 2 nd Elective end of therapies

Survivorship Passport: Quality and security Certifications • ISO 9001: 2008 quality certification for Survivorship Passport: Quality and security Certifications • ISO 9001: 2008 quality certification for "Design, development, creation, and distribution of services and systems in the field of Information and Communication Technology". • ISO 27001: 2005 security certification for "Analysis, design, development, operation and maintenance of Decision Support Systems and Information System Infrastructures for management, monitor and analysis of clinical trials and epidemiological registries for health services organizations".

Sustainability One critical issue for the long-term sustainability of the survivorship passport project is Sustainability One critical issue for the long-term sustainability of the survivorship passport project is to limit the time needed for clinicians to insert manually data on the system. Some data entry simulations has demonstrated that, if not properly organized within the healthcare delivery processes, it may take a few hours to a clinician to gather all the documents and data related to a patient and to insert them online into the platform It is key to integrate all existing data sources available at hospital level related to the passport

The survivorship passport Data integration options Integration with existing data flows through standard format The survivorship passport Data integration options Integration with existing data flows through standard format files Automatic or on-demand data import from local databases to Passport central database Integration with Clinical Trials databases DB download for hospitals according to data access rules Possibility to develop specific web services for seamless data integration

The survivorship passport data flow Data Input Passport dedicated database Secure Web Access rules The survivorship passport data flow Data Input Passport dedicated database Secure Web Access rules National/ Hospital databases Clinical trials databases

Link to guidelines for follow-up Link to guidelines for follow-up

Guidelines development plan Guidelines development plan

Grading system to formulate recommendations Grading system to formulate recommendations

Clinical Recommendations STRONG recommendation “is recommended ” MODERATE recommendation “is reasonable “ WEAK recommendation Clinical Recommendations STRONG recommendation “is recommended ” MODERATE recommendation “is reasonable “ WEAK recommendation “may be reasonable” NOT TO DO recommendation “is not recommended”

Harmonizing Breast Cancer Surveillance For Women Treated with Radiation for Childhood Cancer Harmonizing Breast Cancer Surveillance For Women Treated with Radiation for Childhood Cancer

Definition of risk groups • Providers and • Breast cancer women treated surveillance is Definition of risk groups • Providers and • Breast cancer women treated surveillance is surveillance may with chest reasonable for be reasonable for radiation should women treated be aware of with 10 -19 Gy with 1 -9 Gy breast cancer risk. chest radiation based on clinical • Breast cancer based on clinical judgment and surveillance is judgment and considering recommended for considering additional risk women treated additional risk factors. with > 20 Gy chest factors. radiation.

Frequency of Surveillance • Annual breast cancer surveillance is recommended for women treated with Frequency of Surveillance • Annual breast cancer surveillance is recommended for women treated with chest radiation for at least up to 50 years of age • Additional breast cancer surveillance (beyond that recommended by national health care systems) in women older than 50 years of age is reasonable based on clinical judgment and pending availability of further data.

Surveillance modality: clinician exam • Clinician exam may be reasonable in women treated with Surveillance modality: clinician exam • Clinician exam may be reasonable in women treated with chest radiation returning for follow-up medical evaluations in countries where breast cancer surveillance access is through clinician referral.

Surveillance modality • Breast cancer surveillance with mammography and/ or MRI (as defined by Surveillance modality • Breast cancer surveillance with mammography and/ or MRI (as defined by health care systems) is recommended for at risk women. Comment: Screening with mammography and MRI is superior to single modality in detection of early breast cancer as has been demonstrated in studies of younger women with hereditary breast cancer risk.

Cardiomyopathy Surveillance Harmonization: Formulation of Recommendations October 7, 2012 London Cardiomyopathy Surveillance Harmonization: Formulation of Recommendations October 7, 2012 London

Definition of risk? Risk Group Anthracycline (mg/m 2) Radiation (Gy) Combined Rx High > Definition of risk? Risk Group Anthracycline (mg/m 2) Radiation (Gy) Combined Rx High > 250 > 35 Any Moderate 100 to < 250 > 15 to < 35 -- Low < 100 < 15 --

General recommendation Survivors treated with anthracyclines and chest radiation and their providers should be General recommendation Survivors treated with anthracyclines and chest radiation and their providers should be aware of the risk of cardiomyopathy.

Who needs surveillance? Anthracyclines Cardiomyopathy surveillance is recommended for survivors treated with high dose Who needs surveillance? Anthracyclines Cardiomyopathy surveillance is recommended for survivors treated with high dose (> 250 mg/m 2) anthracyclines. Cardiomyopathy surveillance is reasonable for survivors treated with moderate dose (> 100 to < 250 mg/m 2) anthracyclines. Cardiomyopathy surveillance may be reasonable for survivors treated with low dose (< 100 mg/m 2) anthracyclines.

Who needs surveillance? Radiation fields including the heart Cardiomyopathy surveillance is recommended for survivors Who needs surveillance? Radiation fields including the heart Cardiomyopathy surveillance is recommended for survivors treated with high dose (> 35 Gy) chest radiation. Cardiomyopathy surveillance may be reasonable for survivors treated with moderate dose (> 15 < 35 Gy) chest radiation. No recommendation can be formulated for cardiomyopathy surveillance for survivors treated with low dose (< 15 Gy) chest irradiation with conventional fractionation.

What surveillance modality should be used? Echocardiography is recommended as the primary cardiomyopathy surveillance What surveillance modality should be used? Echocardiography is recommended as the primary cardiomyopathy surveillance modality for assessment of left ventricular systolic function in survivors treated with anthracyclines and/or chest radiation. Radionuclide angiography may be reasonable for cardiomyopathy surveillance in at risk survivors for whom echocardiography is not technically feasible/optimal.

What surveillance modality should be used? MRI is not recommended as the primary cardiomyopathy What surveillance modality should be used? MRI is not recommended as the primary cardiomyopathy surveillance modality for at risk survivors. Assessment of cardiac blood biomarkers (e. g. , natriuretic peptides) is not recommended as the primary cardiomyopathy surveillance in at risk survivors.

At what frequency should surveillance be performed in Moderate/Low Risk Survivors? Risk Group Anthracycline At what frequency should surveillance be performed in Moderate/Low Risk Survivors? Risk Group Anthracycline (mg/m 2) Radiation (Gy) Combined Rx High > 250 > 35 Any Moderate 100 to < 250 > 15 to < 35 -- Low < 100 < 15 -- Cardiomyopathy surveillance is reasonable for Moderate/Low Risk survivors to begin no later than 2 years after completion of cardiotoxic therapy, repeated at 5 years after diagnosis and continue every 5 years thereafter. More frequent cardiomyopathy surveillance may be reasonable for Moderate/Low Risk survivors Lifetime cardiomyopathy surveillance may be reasonable for Moderate/Low Risk survivors

Conclusions • The survivorship passport should be a standard of care in the follow-up Conclusions • The survivorship passport should be a standard of care in the follow-up of childhood cancer survivors • Guidelines development is an international long-term plan • The treatment summary may be long to be prepared • Linkage among several data bases in which treatment information has already been collected is highly recommended • Use of common languages • … a challenging but a surely very useful enterprise!

The Statement 9. The general public needs to be made aware of and accept The Statement 9. The general public needs to be made aware of and accept the reality of the cure of childhood cancer. The society should insure that survivors have equal access to education, jobs, insurance, and medical care. 10. Inequalities of current treatment strategies and cure rates, both within and between nations, remain a challenge for the international community to address.