For a young person, completing cancer treatment can mark a long-awaited return to everyday life – education, work, relationships and plans for a family. Yet medically, the story does not always end there. Some effects of cancer treatment may emerge months or even years later. European researchers are therefore exploring how young survivors’ health can be supported not only during occasional hospital appointments, but also in their everyday lives.
This challenge was at the centre of the European webinar “Not the End of the Story: Understanding Late Effects of Cancer Treatment in AYA Cancer Survivors.” Researchers, healthcare professionals and patient advocates discussed life after cancer for adolescents and young adults (AYA) and presented several Horizon Europe projects addressing survivorship.

The webinar moderator, cardiologist Dr Miha Bogdan of the Medical University of Gdańsk, highlighted that late effects may include not only cardiovascular disease and fertility problems, but also anxiety, depression, cognitive difficulties, and social and occupational challenges.

Lithuania was represented by Professor Asta Pundzienė of Kaunas University of Technology (KTU), who presented the international LATE-AYA project. The initiative is exploring how artificial intelligence, smartphones and wearable devices could help researchers better understand the late effects of cancer treatment and provide more personalised support to young survivors.

Surviving Cancer Is Not the End of the Story

Advances in cancer treatment mean that increasing numbers of children, adolescents and young adults are surviving the disease. During the webinar, participants noted that cure rates among children and adolescents can reach around 80 per cent. As the survivor population grows, however, another question becomes increasingly important: what happens to their health five, ten or twenty years later?

Late effects of treatment can vary widely. They may include cardiovascular disease, metabolic and endocrine disorders, infertility, chronic fatigue, and psychological and cognitive difficulties. For young survivors, these effects can be particularly significant because they may emerge at a formative stage of life – while studying, starting a career, building relationships or planning a family.

Professor Pundzienė stressed that the impact extends beyond physical health. “Alongside cardiovascular, endocrine and fertility problems or chronic fatigue, there can be nutritional, cognitive, psychological and socioeconomic consequences that affect a person’s everyday life. These are no less important than the physiological difficulties that may follow active cancer treatment,” she said during the webinar.

The Most Difficult Period May Be Between Appointments

Paradoxically, one of the most challenging stages may begin after active treatment has ended. During treatment, patients are surrounded by healthcare professionals, undergo regular tests and have scheduled appointments. Once treatment is over, contact with the healthcare system becomes less frequent, leaving survivors to decide for themselves whether a new symptom is harmless or potentially a sign of something more serious.

“After active treatment is completed, cancer survivors may feel left alone because their next appointment may be a month away. Every runny nose or pain can be experienced much more intensely by someone who has had cancer than by someone without that experience,” Professor Pundzienė explained.

She also pointed to the fragmented nature of post-treatment care. During active treatment, the oncologist is often the patient’s main point of contact. Afterwards, however, the survivor may need to navigate between a general practitioner, cardiologist, psychologist and other specialists.

Survivors therefore need more than medical tests. They also need a clear answer to a deceptively simple question: how should I live and look after my health once active treatment is over?

The scale of this challenge was illustrated during the webinar by patient advocate and psychologist Katiana Maloli, herself a cancer survivor. She described learning only many years after treatment that she should undergo regular cardiac check-ups because of the potential cardiotoxic effects of her cancer therapy. Survivors, she argued, are often expected to manage their own examinations and long-term health without being given enough information to do so confidently.

Can a Smartwatch Help Doctors Provide Better Follow-up Care?

Digital health is one of the approaches European researchers are now investigating.

Running from 2025 to 2030, the LATE-AYA project aims to develop an AI-based digital phenotyping system. In practical terms, researchers want to understand a survivor’s health and changes in their condition by bringing together different types of data generated in everyday life.

Smartphones and wearable devices are expected to form part of this approach. The aim is not to focus solely on physical health, but also to consider psychological and social well-being. The project involves 19 organisations, including Kaunas University of Technology and Lithuania’s National Cancer Institute, and is coordinated by the Technical University of Madrid.

“Our first goal is to empower cancer survivors through a personalised digital follow-up environment and to improve their quality of life by helping them manage the late effects of treatment,” Professor Pundzienė explained.
The proposed approach combines smart sensing, AI-driven risk prediction, a chatbot, coaching and education.

LATE-AYA plans to collect prospective data using smartwatches and smartphones and subsequently test the digital platform being developed by the project. But there is an important principle behind the work: the technology is not being designed by starting with the question “What can AI do?” Instead, researchers are asking “What do survivors actually need?”

Health Monitoring Should Not Become Another Source of Anxiety

Digital health monitoring also comes with risks. For someone who has already experienced cancer, constant alerts about possible health problems could increase anxiety rather than reduce it.

When designing such systems, the key question is therefore not simply how much data can be collected, but what meaningful value those data provide to patients and healthcare professionals.

LATE-AYA researchers began by conducting focus groups with young cancer survivors across Europe, asking what they would expect from such a system and what kind of support they actually need.

According to Professor Pundzienė, the findings revealed a clear need to bridge the information and support gap between appointments with healthcare professionals. “Sometimes a person feels pain and immediately wants to know: could this be related to a recurrence, or is it simply a virus? Having an answer could make them feel more secure and reduce anxiety. We hope the LATE-AYA system will be able to help with these seemingly small but very important questions that arise when survivors are on their own and do not have structured support from the healthcare system,” she said.

This distinction is crucial. A digital system should not turn a survivor into a patient who is constantly monitoring themselves. Its purpose should be to provide reassurance, help people understand when a change matters and guide them towards professional support when necessary.

Survivors Are Helping to Design Technology

The same principle was echoed by other webinar participants. Cardiologist Dr Amelia Stepnowska, presenting the MAYA project, argued that effective digital follow-up should have three essential qualities: it should be understandable, actionable and connected to real healthcare.

Digital tools, she stressed, should not replace clinicians. Rather, they should help identify when human support is needed. The same principle underpins LATE-AYA. The system under development is intended to analyse trends in health data and provide information and personalised recommendations, while remaining useful and accessible to both survivors and healthcare professionals.

Another important shift is that patients are no longer seen simply as the end users of technology.

LATE-AYA began with living labs and focus groups in which people with lived experience of cancer described their needs and responded to ideas for the future system. Technology development and testing follow from this work.
The reason is straightforward: even the most sophisticated application will have little impact if the people it was designed for do not want to use it.

During the webinar, patient advocate Katiana Maloli made the point even more strongly. Involving patients should not be a “tick-box” exercise in a research project, she argued. People with lived experience should be involved from the earliest stages of technology design and help determine whether a proposed solution is understandable, practical and genuinely relevant to those expected to use it.

Lithuania is Helping Shape International Innovation in Cancer Survivorship

LATE-AYA is a Horizon Europe project with a budget of more than €6.2 million, bringing together universities, clinical and research centres, and technology organisations across the EU. Kaunas University of Technology is an official project partner, with Professor Asta Pundzienė leading KTU’s contribution. Lithuania is also represented in the project by a National Cancer Institute team with experience in research using wearable devices: Dr Edita Baltruškevičienė, Assoc. Prof. Dr Audrius Dulskas, Dr Jonas Venius, and others. This means that Lithuania is involved not only in using already-developed digital health technologies, but also in developing and evaluating a new approach to the long-term care of young people who have overcome cancer.

Progress in oncology today is changing the way success is defined. As more young people survive cancer, measuring survival alone is no longer enough. Can a survivor return to education and employment? Build relationships and start a family? Do they understand their long-term health risks? Do they know which symptoms deserve attention and where to seek help? And can the healthcare system recognise meaningful changes not only during a brief clinical appointment, but also during the months in between?

This is where digital medicine may have a new role to play – not by replacing the relationship between a patient and their doctor, but by helping to maintain that connection between appointments. As the webinar discussions made clear, cancer treatment may end, but life after cancer continues. The question for the future is therefore not only how to help a young person survive cancer, but how to help them live well after cancer.