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EUROPEAN COMMISSION DIRECTORATE-GENERAL FOR HEALTH AND FOOD SAFETY Public Health, Cancer and Health security Cancer, Health in all Policies Luxembourg SANTE.B.1/PR/sg Subject: HaDEA/2024/OP/0027 - Exploratory study on the provision of care for Adolescent and Young Adult (AYA) cancer patients in the Union Dear Sir/Madam, With this letter, I would like to inform you that the European Health and Digital Executive Agency (HaDEA), acting under the powers delegated by the European Commission, has initiated an "Exploratory study on the provision of care for Adolescent and Young Adult (AYA) cancer patients in the Union", under service contract No. HaDEA/2024/OP/0027. This topic supports a major goal of both the Europe’s Beating Cancer Plan1 and the Horizon Europe Cancer Mission2, namely, to improve the quality of life of cancer patients and survivors. Despite its relatively low incidence among adolescents and young adults, cancer remains a significant contributor to mortality in individuals aged 15-39 (AYA age range). Unique biological characteristics of tumours in AYAs often result in poorer treatment outcomes compared to younger or older patients with similar types of cancer. AYAs, being in a distinct age group between childhood and adulthood, require specialised care issues such as fertility concerns, psychological well-being, education and career development, body image, sexuality and relationships, and alcohol/substance abuse. Moreover, AYAs demonstrate different health-seeking behaviours compared to adults, making it even more challenging to provide them with appropriate preventive measures and care services. Despite the necessity for dedicated AYA services, their availability varies significantly across EU Member States, Iceland and Norway, contributing to inequalities in cancer care provision, leading to inadequate support and care for AYAs facing cancer. The study will be conducted across all 27 EU Member States, Iceland and Norway, and aims to map the provision of healthcare to Adolescent and Young Adults (AYA) cancer patients and survivors. The analysis will produce a clear picture of the approaches available at national (or, where relevant, regional/local) level, including identification of barriers for the integration of dedicated AYA care and services in healthcare systems. 1 A cancer plan for Europe - European Commission 2 EU Mission: Cancer - European Commission Commission européenne, 2920 Luxembourg, LUXEMBOURG – Tel. +352 43011 Office: DRB- A3/054A – Tel. direct line +352 4301-37542 [email protected]  Based on the evidence collected, the study will document and analyse the major barriers and enabling factors, detected in each of the 27 EU Member States, Iceland and Norway, for the design and provision of quality care before, during and after cancer treatment, but also highlight best practices and innovative approaches into this provision. Recommendations for future actions directed at EU Member States, Iceland and Norway will be developed, together with relevant strategies to improve the provision of targeted healthcare to AYA cancer patient and survivors. ICF, together with Spark Legal and Policy Consulting (‘Spark’), Fundació de recerca Sant Joan de Déu (‘SJD’) and Timelex, were awarded an 18-month contract to provide the contracting authority with an external and independent study, which is expected to be completed by the end of 2026. During the study, the project team will undertake consultations, which include interviews and focus groups with key stakeholders, across the EU 27 Member States, Iceland, and Norway, to validate a model of provision of quality healthcare and services for AYA cancer patients and survivors, as well as to collect their views and opinions on gaps, suggested refinements and insights based on their expertise and/or experience. Surveys and interviews will also be conducted with stakeholders to assess the current state of AYA cancer care provision across the EU 27 Member States, Iceland, and Norway, to gather views on insights, experiences and data on existing practices, challenges, enabling factors, best practices, and areas for improvement. We would kindly ask you to support the consultation process when you are contacted by ICF, Spark Legal and Policy Consulting (‘Spark’), Timelex and Fundació de recerca Sant Joan de Déu (‘SJD’) research team for the necessary arrangements. Your input is invaluable for gathering a robust evidence base for the study. Please be assured that all data provided to ICF, Spark Legal and Policy Consulting (‘Spark’), Timelex and Fundació de recerca Sant Joan de Déu (‘SJD’) will be used for the purpose of this study only. All personal data will remain confidential and will be deleted as per the applicable data protection notice. If you have any further questions regarding the organisation of the study, please do not hesitate to contact the study team ([email protected]). Should you need any further information related to the objectives and overall design of the study, you may contact the project advisor at HaDEA, Soushma Sougoumarin ([email protected]). Looking forward to your response and thanking you in advance for your support. Yours sincerely, Philippe ROUX Head of Unit 2 Electronically signed on 10/07/2025 12:10 (UTC+02) in accordance with Article 11 of Commission Decision (EU) 2021/2121 Model of quality care provision for Adolescent and Young Adult ( AYA) cancer patients in the European Union: Component and subcomponent Identified effective approaches Overarching components 1.1: Age range Aligning with international common practice by using 15-39 as default but maintaining flexibility in the age range applied based on the needs of the population, and disease prevalence and characteristics, rather than enforcing hard cut-off points. Balancing a broader overall age range (e.g. 15-39) for inclusivity with narrower sub-ranges (e.g. 15-24) to accommodate the heterogeneity of needs within the larger age bracket. Application of sub-ranges based on developmental/psychosocial, biological/epidemiological, and practical considerations, including alignment with previous research. 1.2: Access and Equity System-level strategies can support consistent care across regions and institutions, including national policies, clinical guidelines and care pathways. Multi-disciplinary teams ( MDTs - paediatric and adult oncology specialists) and the use of centralised/dedicated specialist services or established network of centres can support continuity and quality of care Appointing specific contact points can help AYA patients to navigate complex systems, and can also be used to monitor and signpost to support for socioeconomic issues. Recommend ed measures to reduce geographical disparities and to ensure inclusive, patient - centred care are detailed , but little is AYA specific. 1.3: Quality improvement, data and monitoring Guidelines should be developed by experts who are well-versed in the needs of the AYA community and should draw on a comprehensive evidence review and/or adaptation of existing evidence-based guidelines as well as consultation with relevant stakeholders . Where research is insufficient to reach evidence-based guidelines, expert consensus should be utilised . Where available and confirmed as best practice and of added value, European evidence-based guidelines should be adopted and incorporated into national policy . Developing practical tools can support implementation of guidelines. Clinical components 2.1: Age-appropriate cancer care provision across stages Increasing awareness among healthcare professionals, patients, their families and the general public about cancer risks, signs and symptoms in people in the AYA age range Newly diagnosed AYA patients should be managed through m ulti-disciplinary teams ( MDTs, including paediatric and adult oncologists) to ensure age-appropriate, accurate and comprehensive diagnostic assessments as well as psychosocial and oncofertility support requirements. Developing clear, AYA-specific pathways of care including referral pathways to specialist services and within networks . Adapting care to the distinct intersection of biological vulnerabilities (development stage, tumour profiles , age stratification ), developmental transitions and psychosocial challenges faced by AYAs. Addressing biological considerations such as oncofertility, late effects and toxicity profiles early, with timely counselling and screening. Transitioning from paediatric to adult care, and through the stages should be structured and supported to avoid disruption (see also Transitions). 2.2: Oncofertility Holding oncofertility discussions and counselling as early as possible after diagnosis and before cancer treatment Continuing oncofertility care during and after cancer treatment , including periodic follow ups. Ensuring universal access to fertility preservation services for all AYA cancer patients Ensuring oncofertility care addresses psychological and emotional impacts of fertility issues. Including reproductive health specialists within AYA MDTs. Providing transparent information about the logistics and costs of available Fertility Preservation ( FP ) options Implementing initiatives to cover or reduce the cost of FP 2.3: Transitions (from paediatric to adult and across stages of care into survivorship) Creating specialised, integrated environments for AYA cancer patients M DB Ts /MDTs (with both paediatric and adult oncologists) to define and manage treatment plans in younger age ranges Using a dedicated care coordinator to support continuity of care, including in the transition to survivorship Taking a planned and gradual approach to transitioning between paediatric and adult services, particularly for survivorship. 2.4: Centralised and coordinated specialised AYA care Providing integrated, multidisciplinary care that bridges the traditional divide between paediatric and adult oncology. 2.5: Multi-disciplinary teams ( MDTs ) Using structured multi-disciplinary teams( MDTs ) / multidisciplinary tumour boards ( MDTBs ) as the backbone of communication and decision-making in AYA cancer care. Core team to include: M edical, radiation and surgical oncologists H aematologists P athologists R adiologists However, the team should be f lexib le in composition to meet patient needs . Supported by a wide range of professionals to provide age-specific care to AYAs encompassing developmental, educational, sexuality, psychosocial (including body image) and fertility needs. 2.6: Age-specialised healthcare staff training Ensuring professionals involved in providing cancer care for AYA patients have specialised knowledge and training that reflect the biological, developmental and psychosocial complexity of this population Ensuring professionals work in MDTs (as above). 2.7: Voice and choice Ensuring shared decision-making , particularly in f ertility p reservation ( FP ) and treatment planning, where patient autonomy and informed consent are essential. Ensuring the involvement of parents / carers, friends and partners in decision making is informed by the level preferred by the AYA patient . Utilising feedback mechanisms to further ensure that care reflects lived experience. Draft guidelines should be reviewed by relevant stakeholders including experts and patient representatives to ensure their perspectives are incorporated and to support dissemination and implementation. Research and clinical trials 3.1: Research and clinical trials: Prioritising research in the following areas : biological and causal mechanisms survivorship and Long-Term Follow Up ( LTFU ) psychosocial care and patient-centred outcomes treatment optimisation and de-escalation patient involvement and equity data, care models and service provision innovation and education. Involving AYA patients in setting research priorities Taking action to increase inclusion and access to AYA-specific clinical trials , with a focus on co-production. Non-clinical components 4.1: Psychosocial support Integrating a proactive, personalised and multidisciplinar y service across the care continuum Actively offering holistic, age-appropriate care to AYA patients encompassing clinical support; physical and lifestyle support; information and communication about diagnosis, treatment, potential life and survivorship; developmental identity and support to address the impact of cancer on patients’ sense of self; social and peer interaction; practical and socio-economic support. Providing survivorship and transitional care post-treatment to manage fear of recurrence, difficulties with societal reintegration and the long-term psychological and physical effects of cancer. Providing support through mixed modalities , which may include individual therapy with psycho-oncology specialists, strengthening family communication and adaptation, and offering peer support groups 4.2: Social and financial participation Appointing a designated contact person to guide the patient , monitor socioeconomic issues and coordinate support Collaboration between the healthcare team and educational institutions to develop individualised learning plans and arrangements. Integrating financial and socioeconomic issues throughout care stages. Proactively providing AYAs with information about various peer support options , such as support groups, online communities, camps and retreats Implementing the “right to be forgotten” , to help ensure fair access to financial services without discrimination based on their cancer history 4.3: Carers and family Providing a comprehensive support programme for caregivers and families of AYA cancer patients and survivors that addresses their informational, psychosocial and practical needs throughout the entire cancer journey. Involving the family unit in care planning and shared decision-making, as guided by the AYA patient’s preferences and ensuring a balance with the AYA’s developing autonomy . EUROPEAN HEALTH AND DIGITAL EXECUTIVE AGENCY (HADEA) Unit A2: EU4Health/SMP Food Data Protection Notice for the Stakeholder Consultation Activities – Exploratory study on the provision of care for Adolescent and Young Adult (AYA) cancer patients in the Union (HADEA/2024/OP/0027) This Data Protection Notice describes the measures taken to protect your personal data with regard to the action involving the present data processing operation and what rights you have as a data subject. The European Health and Digital Executive Agency (HaDEA or Agency) protects the fundamental rights and freedoms of natural persons and in particular your right to privacy and the protection of your personal data. Your personal data1 are processed in accordance with Regulation (EU) 2018/1725 of the European Parliament and of the Council of 23 October 20182 on the protection of individuals with regard to the processing of personal data by the Union institutions, bodies, offices and agencies and on the free movement of such data. 1. What are the purposes of this processing activity? The purpose of this DPN is to inform participants of interviews and/or survey as part of the targeted consultation activities (Task 3 interviews and one online survey) for the “Exploratory study on the provision of care for Adolescent and Young Adult (AYA) cancer patients in the Union” about the processing activities related to their personal data. This includes identifying and contacting relevant stakeholders; collecting their feedback on the state of play of AYA cancer care in the 29 countries in scope; and analysing stakeholder perspectives to inform policy recommendations on AYA cancer care provisions. This processing activity covers: ▪ Identifying stakeholders relevant for the consultation activities. ▪ Carrying out the consultation activities, which will consist in: − Sending invitations to take the Survey (Task 3), follow up emails and collection of feedback, − Sending invitations and registration of participants to interviews (Task 3) and inclusion in participants’ list, − Conducting the interviews and survey, − Storing data in our secured servers and conducting the analysis of the data, aggregate data and prepare reports. You have been identified as a stakeholder to be contacted since it has been concluded that your views are relevant (your contact details were publicly available in your organisation’s website as person of contact and/or shared with your approval by peers and/or you have given your consent to be recontacted for this study from previous tasks (Task 2) and 1 Personal data shall mean any information relating to an identified or identifiable natural person (‘data subject’). An identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person. 2 Regulation (EU) 2018/1725 of the European Parliament and of the Council of 23 October 2018 on the protection of natural persons with regard to the processing of personal data by the Union institutions, bodies, offices and agencies and on the free movement of such data, and repealing Regulation (EC) No 45/2001 and Decision No 1247/2002/EC (OJ L295/39 of 21.11.2018). necessary for the targeted consultation activities (Task 3 survey and interviews), and because you are part of one of the following stakeholder groups: • Organisation representing AYA patients and survivors, • Organisation representing AYA cancer patients’ carers and families, • Relevant national authorities and public health authorities, • Relevant health and care professionals, • Clinical trial coordinators and pharma representatives, • Academia and research institutes. Your participation in the consultation activities mentioned above is entirely voluntary, so you can refuse to take part if not interested, at any time. You will find further information regarding the consultation process in the endorsement letter. 2. Who is the data controller? The data controller of the processing operation is the Head of Unit A2 – EU4Health/SMP Food of the Agency (HaDEA). 3. Who is the data processor? The following entities process your personal data on HaDEA’s behalf: • ICF S.A., Avenue Marnix 17, 1000 Brussels, Belgium (hereinafter referred to as “Data Processor”) as the lead contractor for conducting the stakeholder consultations, data collection, analysis, and reporting activities. • Spark Legal and Policy Consulting (hereafter ‘Spark’) is a company registered and incorporated under the laws of Belgium with its registered office located at Rue Des Comédiens 22, 1000 Brussels, Belgium. Spark will be involved in the following consultation activities, within Task 3: interviews. For the purpose of carrying out these activities, Spark: ▪ Conduct the interviews, ▪ Record the interviews for accuracy and note taking purposes and only with participants’ consent, ▪ Store responses, ▪ Conduct the analysis of the data, ▪ Conduct the clustering and anonymisation of the data before the final reports are submitted, ▪ Delete the notes, recordings and any personal data associated with the consultation activities after the final reports are shared with HaDEA. Please read below section for how long we are keeping your data. • ICF is supported by Fundacio Privada Recerca I Docencia Sant Joan Deu (hereafter ‘SJD’), is a private research foundation located at Santa Rosa 39-57 4Planta (Edificio PCCB) 08006 Barcelona, Spain. SJD will be involved in the following consultation activities, within Task 3: interviews. For the purpose of carrying out the interviews, SJD will: • Conduct the interviews, • Record the interview for accuracy and note taking purposes and only with participants’ consent, • Store interviews’ responses, • Conduct the analysis of the data, • Conduct the clustering and anonymisation of the data before the final reports are submitted, • Delete the notes, recordings and any personal data associated with the 2  consultation activities after the final reports are shared with HaDEA. Please read below section for how long we are keeping your data. 4. Which personal data is collected? The following of your personal data are collected for the purpose outlined above: • Full name (first and last names), • Role or function within your organisation, • Name of your organisation, • Professional contact information (email address and phone number, if needed for organisation of the interview), • Country or region of work, • Responses and insights shared during consultation activities (Task 3 survey and interviews) related to AYA cancer care provision, through (closed and open questions regarding your knowledge on the matter and professional experience. Personal data indicated above are mandatory for the purpose(s) outlined above. In addition, the following non-mandatory personal data may be collected: audio and/or video recordings of interviews. These will only be processed based on your explicit prior consent.3 Before beginning the interview, you will be informed that the data collected through the consultation are treated according to the study’s data privacy notice (which is this DPN), attached to the email you received inviting you to take part to the specific consultation. At the beginning of the interviews, you will be asked if you consent to the recording. The recording will not be publicly available; it will be used only for note taking purposes, and it will be deleted after, accordingly to the maximum period of retention (cf. retention paragraph below). Furthermore, you may spontaneously provide other, non-requested personal data in the context of your reply to the targeted consultation regarding quality of life of cancer patients and survivors (e.g. personal health related data). If so, we will either disregard or anonymise the received data through a central contact point. Your personal data will not be disclosed when reporting the consultation results. Thus, the replies to the interviews will be presented anonymously. During the interview, you will be asked to accept this privacy policy to continue with the consultation, and there will be a track in the notes from the interviews of the express or denied consent. Information will be anonymised before providing the feedback to the contracting authority, and thus stakeholders cannot be identified from their inputs. For the publishable study report, the information will also be anonymised. 5. Who has access to the personal data of data subjects and to whom can they be disclosed? The recipients of your personal data will be as follows: • Authorised staff of HaDEA’s A2 and the European Commission’s (DG SANTE B1 & DG RTD D1) units involved in this study, • Authorised and need-to know staff of HaDEA contractors responsible for the consultation activities, 3 Processing of non-compulsory personal data can only be based on consent and individual tick boxes have to be provided when data is collected to document the consent. 3  •Bodies charged with monitoring or inspection tasks in application of EU law (e.g. EC internal audit, Court of Auditors, European Anti-fraud Office (OLAF), the European Ombudsman, the European Data Protection Supervisor, the European Public Prosecutor), in compliance with the relevant legislation. Third party tools used for the organisation of the consultation activities: •Microsoft Teams: for the purpose of hosting the interviews, is a third-party tool under Microsoft O365 which collects email, title, first name, last name, country, company and job, phone number, IP address, and browser-generated information (including device information, operating system, device type, cookies or other technologies used to analyse users’ activity). It hosts the collected personal data within the European Union. Nevertheless, data subjects shall be informed that Microsoft is a US-based company but data will be stored only in EU/EEA servers. Data will be securely deleted after the end of retention period (see #8). Microsoft privacy statement can be found at Microsoft Privacy Statement – Microsoft privacy. • Forsta: for the purpose of hosting the survey, is a third-party tool that collects survey responses, including the country and stakeholder group. Forsta does not collect any information other than the responses to the survey questions. It stores data on servers in Germany and has backups within the European Union. Data will be securely deleted after the end of retention period (see #8). Forsta’s privacy statement can be found at Forsta Privacy Notice. Your personal data will not be transferred to third countries or international organisations. The processing of your data will not include automated decision-making (such as profiling). 6. Which is the legal basis for processing your personal data? The legal basis for the processing activities are: • Article 5(1)(a) of Regulation (EU) 2018/1725: processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the Union institution or body4, laid down in Union law5 for your mandatory personal data indicated above. • For non-mandatory personal data indicated above, i.e., interview recordings), Article 5(1)(d): processing is based on your informed prior consent. • The subject matter of the consultation activity will not require you to provide special categories of personal data, and in particular data about your health. However, in case you would voluntarily provide special categories of data, their processing will be based on your explicit consent, in line with Article 10 (2)(a) of Regulation (EU) 2018/1725. 7. How to withdraw your consent and the consequences of doing this If you provide consent (e.g. for your interview to be recorded, to take part in the interview), you may withdraw it at any time by contacting the study team. 4 Act of Establishment: Commission Implementing Decision (EU) 2021/173 of 12 February 2021 establishing the European Health and Digital Executive Agency 5 Regulation (EU) 2021/522 establishing a programme for the EU’s action in the field of health (EU4health programme) for the period 2021–2027 4 If you want us to delete the related personal data (e.g. recordings) please contact us at the contact details below and clearly indicate your deletion request, and we will confirm deletion without undue delay and within a month of the receipt of our request. If you want us to delete your survey responses, please contact us at the contact details below before the survey closes. As the survey platform does not collect any personal information and responses are anonymised in analysis, it will not be possible for the study team to identify your response after the survey has been closed. Please note that withdrawing your consent does not affect the lawfulness of any processing based on your consent before this consent is withdrawn. Attention is drawn to the consequences of a deletion request, which means that all your contact details will be lost. 8. How long do we keep your personal data? Your personal data will be kept for a maximum period of 6 months after the end of the project. Data will be securely deleted at the end of this period, on the 31 March 2027. 9. What are your rights regarding your personal data? You have the right to access your personal data and to request your personal data to be rectified, if the data is inaccurate or incomplete; where applicable, you have the right to request restriction or to object to processing, to request a copy or erasure of your personal data held by the data controller. If processing is based on your consent, you have the right to withdraw your consent at any time, without affecting the lawfulness of the processing based on your consent before its withdrawal. Your request to exercise one of the above rights will be dealt with without undue delay and within one month of its receipt. If you have any queries concerning the processing of your personal data or wish to exercise any of the rights described above, you contact the data controller via: HADEA-A2-DATA- [email protected] and HaDEA DPO [email protected], with the contractor’s contact point at: [email protected] You shall have right to recourse at any time to the European Data Protection Supervisor at [email protected]. Version: December2025 5  Consent Form I confirm that I have read and understood the Data Protection Notice related to my participation in the stakeholder consultation for the “Exploratory Study on the Provision of Care for Adolescent and Young Adult (AYA) Cancer Patients in the Union. ☐ I consent to participating in this interview / survey. ☐ I consent to the audio recording of this interview for the purposes of analysis and reporting under the conditions described. ☐ I consent to the video recording of this interview for the purposes of analysis and reporting under the conditions described. ☐ I provide my explicit consent with processing of health-related personal data that I provide on a voluntary basis. Please note that the subject matter of this consultation activity will not require you to provide special categories of personal data (e.g., data about your health etc.). However, in case you would voluntarily provide special categories of data, their processing will be based on your explicit consent. My participation is voluntary, and I may withdraw my consent at any time without penalty. For any questions or to exercise my data protection rights, I may contact the data controller (HaDEA) or its Data Protection Officer using the contact details provided in the DPN. Electronically signed on 11/12/2025 17:01 (UTC+01) in accordance 6 with Article 11 of Commission Decision (EU) 2021/2121 Saatja: "Keiu Paapsi - TAI" <[email protected]> Saaja: [email protected] Teema: Kutse osaleda uuringus „Noorte (Adolescent and Young Adult, AYA) vähipatsientide ravi korraldus Euroopa Liidu liikmesriikides“, Kuupäev: 2026-03-04 20:06 Tähelepanu! Tegemist on väljastpoolt asutust saabunud kirjaga. Tundmatu saatja korral palume linke ja faile mitte avada. Tere! Pöördun Teie poole seoses uuringuga „Noorte (Adolescent and Young Adult, AYA) vähipatsientide ravi korraldus Euroopa Liidu liikmesriikides“, mida viime läbi Euroopa Tervise- ja Digitaalameti (HaDEA) tellimusel. Uuringu eesmärk on kaardistada, millised teenused AYA patsientidele eri riikides kättesaadavad on, kuidas on korraldatud nende raviteekond ning millised on peamised kitsaskohad ja arenguvõimalused. Selleks soovime läbi viia intervjuusid erinevate valdkonna esindajatega. Otsene tagasiside praktikutelt ja otsustajatelt on selle töö kvaliteedi ja praktilise kasu seisukohalt väga oluline. Seetõttu soovin paluda Teid intervjuule, sest Teie kogemused ja vaated aitaksid meie uurimisrühmal anda HaDEA‑le võimalikult täpse ja tervikliku ülevaate AYA vähipatsientide käsitlusest Eestis. Intervjuu kestab ligikaudu 60 minutit ning seda on võimalik läbi viia Microsoft Teamsi vahendusel või soovi korral silmast silma. Saadan käesoleva kirjaga Teile: 1. intervjuuküsimused 2. ja 3. uuringuga seotud materjalid - DPN, endorcement letter 4. uuringu esimeses etapis kaardistatud riikliku süsteemi ülevaade - AYA model of care Palun andke hiljemalt käesoleva nädala lõpuks (8.märts) märku, kas olete valmis osalema. Kui leiate, et Te ei ole selle teema jaoks kõige sobivam isik või teile ei ole võimalik intervjuul osaleda, oleksin väga tänulik, kui saaksite meid suunata õige inimeseni. Soovi korral võite intervjuul osaleda ka mitmekesi, kaasates mõne kolleegi oma organisatsioonist, kui leiate, et see aitaks mõnele küsimusele põhjalikumalt vastata. Intervjuu viime läbi eesti keeles. Vastust ootama jäädes. Lugupidamisega Keiu Paapsi teadur Epidemioloogia ja biostatistika osakond tel 53870727 [email protected] Tervise <http://www.tai.ee/> Arengu Instituut Jälgi meid ka Facebookis <https://www.facebook.com/TerviseArenguInstituut> Exploratory study on the provision of care for Adolescent and Young Adult (AYA) cancer patients in the Union Task 3 Interviews: Interview Topic Guide template Background of the study ICF was awarded the following independent study: ‘ Exploratory study on the provision of care for Adolescent and Young Adult (AYA) cancer patients in the Union ,’ managed by the European Health and Digital Executive Agency ( HaDEA ), acting under the powers delegated by the European Commission. To carry out this study, ICF, will collaborate with a number of partners: Spark Legal and Policy Consulting (‘Spark’) , Fundació de recerca Sant Joan de Déu (‘SJD’), and Timelex . The Study is expected to be completed by the end of 2026. The purpose of the study is to build ( Task 1 ) and validate (Task 2) a model of AYA quality care provision , which carefully balances attention to policy harmonisation across the EU+2 and contextual factors (e.g., institutional, socio-cultural, and socio-economic). The purpose of the study is to build and validate a model of AYA quality care provision , which carefully balances attention to policy harmonisation across the EU+2 and contextual factors (e.g., institutional, socio-cultural, and socio-economic). The study will then map national provision against this model (Task 3) to generate transparent and generalisable findings, which will feed into EU-wide and country-specific recommendations , to bring about policy change and improved AYA and societal outcomes. Within the current task ( Task 3 ) , t he study team and partners will map the national provision against th e AYA care model developed in Task 1, to generate transparent, internally valid, and generalisable findings, which will feed into EU-wide and country-specific recommendations (Task 4) to bring about policy change and improved AYA and societal outcomes. Objective of the key informant interviews As part of the Study, we (the national researchers), will carry out a number of interviews with stakeholders from all EU Member States, plus Iceland and Norway , with the aim of : G athering comprehensive and accurate data on the actual provision of AYA health and care services at national, regional and local level, and F illing the gaps from the desk research previously carried out at national level. The interviews will last approximately one hour and are planned to take place online (vi a MS Teams or Google Meet ) , or in person . The Study team only will have access to the recording and the transcriptions, and they will be deleted 6 months after the end of the Study (end of the Study: October 2026). Personal views will not be attributed to the interviewee, or any other stakeholders consulted. Background information Could you p lease briefly describe your role, organisation, and experience related to AYA cancer care ? PART 1. OVERARCHING COMPONENTS Is there any tailored legislation or policy measure in place in your country addressing the needs of cancer patients and survivors between 15 and 39 years old ? If not, are there any practices in place in your experience? Could you elaborate on th is ? Could you please clarify if traditional age categories (e.g., 18 years old cut-off between paediatric and adult care) apply in clinical practice for cancer care? Do the legislation/policy measures/strategies in place in your country establish the right for all AYA patients and survivors to an affordable, high quality AYA cancer care, regardless of their socio-economic status ? Could you elaborate on that ? A re any evidence-based guidelines and/or performance indicators adopted in your country, addressing the unique needs of AYA patients and survivors? If yes, are they implemented consistently across your country? In your view, w hat are the b arriers to ensuring affordable and quality cancer care for AYA patients and survivors in your country? In your view , w hat are the enabling factors that could be put in place to ensure affordable and quality cancer care for AYA patients and survivors? Could you think of any existing g ood practices examples in these areas? Could you provide more details on th ese ? PART 2. CLINICAL COMPONENTS Are there any legislation/policy measures in place in your country addressing the following aspect s related to AYA cancer care: Age-appropriate cancer care provision across stages (i.e.: diagnosis, treatment, survivorship, palliative care) Oncofertility care integration in AYA care (e.g., through the introduction of reproductive health specialists within AYA multidisciplinary teams, or continuing oncofertility care during and after cancer treatment) Transitions process es from paediatric to adult oncology care settings and across stages of care into survivorship Centralised and coordinated specialised AYA Care units or centres Multi-disciplinary teams (MDTs) for the care of AYA patients , including paediatric and adult oncologists) to ensure age-appropriate, accurate and comprehensive diagnostic assessments as well as psychosocial and oncofertility support Specialised healthcare staff training address ing the needs and specific requirements of AYA patients Involvement of patients and survivors in decisi on-making and care planning ? If any of the elements described are not in place, what are in your view the existing barriers at national/local level that hinder their implementation/establishment? What are the enabling factors that could be put in place to ensure that AYA cancer care includes the components described above and so respond s to the specific needs of AYA patients? Could you think of any existing good practices examples in these areas? Could you provide more details on those? In particular, are any measures addressing a patient-centred approach implemented in your country ? Could you provide any examples of that in clinical practice? In relation to age- appropriate cancer care across all stages, could you provide any detail on measures in place aimed at ensuring timely diagnosis, age-appropriate treatment, adequate survivorship care and palliative care that might impact AYA patients (even without directly targeting AYA) ? PART 3. RESEARCH AND CLINICAL TRIALS Are there any legal or policy measure in place in your country fostering research and /or clinical trials to advance AYA cancer care ? ( Please note : AYA cancer research refers to scientific investigations that aim to understand and improve care for adolescents and young adults, including studies on biology, survivorship, psychosocial needs, and service models. AYA-specific clinical trials refer to structured studies that test treatments or interventions with AYA patients enrolled as participants, including trials adapted to their age range and needs) In your view, what are the b arriers and e nabling factors related to advancing AYA cancer care research , fostering clinical trials and increasing collaborative research efforts in your country ? Can you think of any g ood practice examples in this area existing in your country ? If yes, could you provide more details on those? PART 4. NON-CLINICAL COMPONENTS Are there any legal or policy measures address ing the following elements of AYA cancer care : Comprehensive psychosocial support addressing the needs of AYA patients Fostering the social and economic reintegration of AYA patients into education or work Family/carer inclusive approach es towards AYA patients care (e.g ., support programmes for caregivers and families including respite care, counselling, funding, and involvement in care planning and decision-making) ? If not, are the re any practices in place in your country related to these aspects? Could you describe them? I f any of the elements described above are not in place, what are in your view the existing barriers that hinder their implementation/establishment ? What are the enabling factors that could ensure that the element s described above are put in place and so AYA cancer care better respond s to the specific needs of AYA patients? Could you think of any existing good practices examples in these areas? Could you provide more details on those? In particular, could you provide any detail on any measure address ing the need of a comprehensive psychosocial support addressing the unique psychosocial needs of AYA cancer patients and survivors ? In particular , could you provide more details on any existing practice aim at fostering the social and economic reintegration of AYA patients? In particular could you provide more details on any existing practice address ing the need for a family/carer inclusive approach towards AYA patients care of AYA patients?