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Beyond Treatment: What Project 528 Reveals About Young Women Living with Advanced Breast Cancer

The hidden burden of diagnosis, the need for holistic care, and Kapa3’s commitment to patient navigation, psychosocial support and empowerment.

A cancer diagnosis at a young age affects far more than physical health. It can disrupt education, employment, family life, personal relationships, financial security and plans for the future. For young women living with advanced breast cancer, these challenges are often particularly complex, as they must navigate treatment and uncertainty while continuing to fulfil multiple personal, professional and family responsibilities.

The findings of Project 528, a global needs assessment led by the Young Survival Coalition (YSC), provide important evidence of these often-overlooked realities.

Presented at the 8th International Consensus Conference for Advanced Breast Cancer (ABC8) in Lisbon in November 2025, the survey gathered 3,881 responses from 67 countries. The findings presented at the conference focused on 385 young respondents under the age of 40 living with advanced breast cancer.

The results highlight significant gaps in access to information, psychological support, financial protection, practical assistance and meaningful participation in healthcare decisions.

Above all, they reinforce an essential message: cancer care must address the whole person, not only the disease.

The revealing findings of Project 528

The survey findings offer a compelling picture of the challenges experienced by young women with advanced breast cancer and demonstrate how deeply the disease affects everyday life.

Motherhood and family responsibilities

Almost half of the respondents (48%) had children under the age of 18.

For young mothers, living with advanced breast cancer means balancing demanding treatment schedules, physical symptoms and emotional uncertainty with the everyday responsibilities of raising children.

Childcare, family routines and concerns about their children’s future can become considerable sources of distress.

These findings highlight the importance of family-centred supportive care that recognises both the needs of patients and those of their loved ones.

Employment disruption and financial toxicity

The socioeconomic consequences of advanced breast cancer are substantial.

64% of respondents reported disruption to their employment following diagnosis, while 40% accumulated medical debt.

According to the detailed Project 528 report, the proportion of respondents who considered themselves financially secure fell from 51% before diagnosis to just 7% during treatment.

These findings illustrate the phenomenon of financial toxicity: the economic burden associated with cancer, including loss of income, treatment-related expenditure, travel costs, caregiving responsibilities and reduced employment opportunities.

Financial insecurity can further intensify emotional distress and create additional barriers to accessing appropriate care.

For younger patients, whose careers and financial independence may still be developing, the consequences can extend well beyond the treatment period.

Psychological distress and quality of life

80% of respondents reported psychological distress or mental health difficulties.

Concerns relating to body image, fertility, sexual health, emotional well-being and loss of independence were widespread, yet were often insufficiently addressed within routine cancer care.

For many young women, advanced breast cancer also raises difficult questions about identity, relationships, intimacy, motherhood and the future.

These challenges demonstrate why psychosocial support should not be viewed as an optional addition to cancer treatment.

It is an essential component of comprehensive, person-centred oncology care.

Delays in seeking care and diagnosis

The survey also revealed important gaps in awareness and early detection.

40% of respondents reported delaying their initial medical consultation. Contributing factors included fear, limited awareness of symptoms and experiences of having their concerns dismissed or underestimated by healthcare professionals.

Only 14% reported being diagnosed through screening or routine medical care, while 85% sought diagnosis after identifying symptoms themselves.

These findings point to the need for greater awareness of breast cancer in younger populations, timely clinical assessment of concerning symptoms and improved communication between patients and healthcare professionals.

They also remind us that young age should not automatically lead to the dismissal of potentially significant symptoms.

Gaps in information and access to precision medicine

The findings also identified differences in access to diagnostic testing and understanding of treatment options.

Although 90% reported undergoing genetic testing for inherited mutations, only 59% had received genomic or companion diagnostic testing to investigate characteristics of the tumour.

Such testing, when clinically indicated, can provide valuable information to support personalised treatment decisions.

Moreover, only 46% of respondents reported being offered more than one treatment option, while targeted therapies were among the least understood treatment approaches.

These results highlight the importance of accessible medical information, effective patient–professional communication and shared decision-making.

Online patient communities also emerged as valuable sources of information, peer support and empowerment. However, the detailed Project 528 report found that 43% had not been referred to peer-support or patient advocacy groups by their healthcare teams.

As Jennifer Merschdorf, Chief Executive Officer of the Young Survival Coalition, emphasised, healthcare systems too often place the burden of self-advocacy on patients who are already coping with fatigue, fear and financial strain.

The Kapa3 connection: From identifying needs to meaningful action

The findings of Project 528 are more than statistics. They reveal the personal, social and economic dimensions of cancer that healthcare systems must increasingly recognise and address.

Although the survey reflects experiences reported across different countries and healthcare contexts, many of the challenges it identifies are also relevant to the needs that cancer patients and families may encounter in Greece.

At Kapa3 – Cancer Guidance Center, we believe that the experience of cancer extends far beyond hospital appointments, medical consultations and treatment decisions.

Cancer affects the ability to work, care for loved ones, maintain financial stability, access essential services and participate fully in everyday life.

Our mission is to help bridge the gap between medical care and the practical, social and emotional needs that accompany a cancer diagnosis.

Patient navigation and guidance within healthcare and social support systems

As Professor Fatima Cardoso, President of the ABC Global Alliance, has highlighted, equitable access to appropriate diagnostics, personalised treatment and comprehensive supportive care is essential.

At Kapa3, we provide free patient navigation and social guidance services, helping people affected by cancer and their families better understand their rights and access available forms of support.

Our work includes guidance on administrative procedures, disability assessment and certification, social benefits, insurance-related matters, workplace rights and available community resources.

Through individualised support and cooperation with relevant services, we aim to reduce the bureaucratic and informational barriers that patients frequently encounter.

No person affected by cancer should have to navigate a complex health and welfare system alone.

Psychosocial support and quality of life

With psychological distress affecting such a high proportion of young patients in the Project 528 survey, emotional and psychosocial care must be recognised as a central part of the cancer journey.

Kapa3 provides psychological support services adapted to the needs of patients and caregivers, alongside social guidance and referrals to appropriate specialised services when necessary.

We recognise the importance of offering a supportive environment where people can discuss emotional uncertainty, changes in family and personal relationships, body image concerns, fear of recurrence or progression, and the challenges of adapting to life with cancer.

Our approach promotes dignity, emotional resilience and a more comprehensive understanding of quality of life.

Practical assistance and support for families

For a young mother living with advanced breast cancer, routine tasks can become overwhelming.

Childcare arrangements, travel for treatment, household responsibilities, employment obligations and financial pressures may all create additional burdens.

Kapa3 supports patients and caregivers by identifying their practical needs, providing information and connecting them with appropriate social services, community resources and support structures.

Through collaboration with local authorities, healthcare professionals and community organisations, we seek to strengthen continuity of support and help families navigate everyday challenges.

Empowerment, health literacy and patient advocacy

One of the strongest messages emerging from Project 528 is that reliable information is a fundamental resource for patient empowerment.

At Kapa3, we work to strengthen health literacy, informed participation and patient advocacy.

We encourage patients to ask questions, understand the information provided by their healthcare teams, become aware of relevant diagnostic and treatment options, and participate actively in decisions affecting their lives.

Our role is not to replace medical advice, but to help people access trustworthy information and feel better prepared to communicate with healthcare professionals.

At the same time, we advocate for more inclusive health and social policies that recognise the particular challenges experienced by adolescents and young adults affected by cancer (AYAs).

These include employment protection, financial security, psychosocial needs, family responsibilities, fertility-related concerns and continuity of care.

Moving forward together: Advocating for a better quality of life

Project 528 offers an important roadmap for researchers, healthcare professionals, patient organisations and policymakers.

It demonstrates the urgent need for healthcare systems that are not only medically effective, but also accessible, coordinated, compassionate and responsive to the realities of people’s lives.

The findings should be interpreted in the context of the survey’s limitations, including its reliance on self-reported experiences and uneven geographical representation. Nevertheless, they provide valuable patient-reported evidence that can inform further research and improvements in supportive care.

Behind every diagnosis is a woman who wants to continue living, loving, working, raising her children, building relationships and making plans for the future.

As Christina Thammasen, who shared her experience of living with metastatic breast cancer, reminds us:

“You have to keep fighting, you have to keep moving forward, you have to keep living your life.”

At Kapa3, we remain committed to ensuring that no woman, no young adult and no family affected by cancer has to face these challenges without information, guidance or support.

We advocate for a model of holistic, person-centred cancer care that extends beyond treatment and recognises every dimension of human life.

Because cancer care is not only about treatment. It is about protecting dignity, supporting everyday life and ensuring that no one is left behind.

Need support?

If you are a young person affected by cancer, a patient or a caregiver seeking guidance, psychological support or information about your rights, the Kapa3 team is here to help.

Kapa3 – Cancer Guidance Center

Telephone: +30 210 5221424
Email: info@kapa3.gr
Website: www.kapa3.gr

Sources and further reading

Young Survival Coalition. Project 528 – First Look ABC Data: Global Needs Assessment of Young Adults Affected by Advanced Breast Cancer (2025).
https://project528.youngsurvival.org/wp-content/uploads/2025/11/MBC-Report-Project528_11.2025.pdf
ABC Global Alliance / ecancer. First global survey highlights challenges faced by young women with advanced breast cancer. 6 November 2025.
https://ecancer.org/en/news/27226-first-global-survey-highlights-challenges-faced-by-young-women-with-advanced-breast-cancer
Oncology Central. ABC8: Global survey highlights challenges that young breast cancer patients face. 6 November 2025.
https://www.oncology-central.com/abc8-global-survey-highlights-challenges-that-young-breast-cancer-patients-face/
Project 528 – Official website and research findings.
https://project528.youngsurvival.org/results/

Article edited by:
Elena Panopoulou, Sociologist, Kapa3 Tripoli Team
Email: elenak3team@gmail.com
LinkedIn: Elena Panopoulou

From access to continuity of care: when navigation becomes part of the solution

Why health systems need pathways, not just pilots

A test is not treatment. A referral does not necessarily mean that a person will reach the care they need. And a successful pilot does not, by itself, mean that a health system works for everyone.

This is the central message of a recent article by Gaurav Ghewade for the World Economic Forum, “Why healthcare systems need pathways, not just pilots.” The key question is no longer simply whether people can enter a health system, but whether the system can support them throughout the journey that follows.

In 2023, around 4.6 billion people worldwide were still not fully covered by essential health services. At the same time, chronic conditions, including cancer, require much more than a single intervention. They demand continuity, repeated contact with services, follow-up and coordinated support.

The critical question therefore becomes:

What happens after the first step?

Does a person know where to go next? Do they understand the procedures they need to follow? Are they aware of the rights and benefits available to them? Can they identify the appropriate services? Is there a clear pathway, or are they left to navigate a complex system on their own?

For people affected by cancer, the journey extends far beyond diagnosis and treatment. It can also involve administrative procedures, social and employment rights, financial and insurance benefits, access to social services, psychosocial support, caregiver needs and the return to everyday life.

This is why navigation is becoming an essential part of person-centred support.

From information to action: MYRTO

This is also the space in which MYRTO – Kapa3’s Digital Social Rights Navigator is being developed.

MYRTO does not replace doctors or healthcare professionals and does not provide treatment decisions. Its purpose is to help people affected by cancer and their caregivers access reliable and understandable information, better understand their social rights and available benefits, identify relevant services and move towards the next practical step in their journey. Kapa3 has positioned MYRTO within a broader approach to digital navigation, social accessibility and patient empowerment.

Because access is only the beginning.

What truly matters is ensuring that no one gets lost between the steps of their journey.

The development of MYRTO is supported by the TIMA Charitable Foundation, Founding Sponsor of MYRTO.

Source

Gaurav Ghewade, Why healthcare systems need pathways, not just pilots, World Economic Forum, 21 August 2026.

Co-creation in health research: from participation to meaningful influence

A new scientific study proposes a framework for understanding who participates in research, when they participate, how they contribute — and how much influence they actually have

Co-creation is becoming increasingly important across public health, research, social innovation and the design of healthcare services. Patients, caregivers, citizens, healthcare professionals, researchers and communities are more frequently being invited to contribute to the development of interventions, services and solutions.

Yet an important question remains:

What does “participation” actually mean?

The presence of a patient or community representative in a meeting does not necessarily mean that they can influence the design, decisions or outcomes of a research project. Similarly, being asked to complete a survey is fundamentally different from helping to design an intervention, interpret findings or determine how results are shared.

A new open-access study, published on 19 August 2026 in the Journal of Public Health, addresses this challenge. Katrina Messiha, Mai J. M. Chinapaw, Johannes C. F. Ket, Renée I. Wink and Teatske M. Altenburg developed the Co-creation Roles Framework, an operational framework designed to systematically describe and classify the roles of different stakeholders in co-creation research.

Moving beyond “who was involved?”

One of the study’s most valuable contributions is its shift away from simply recording whether stakeholders participated towards examining the nature, depth and quality of that participation.

The framework captures eight key dimensions:

the research stage at which participation occurs,
the target group or stakeholder involved,
the aim of involvement,
how stakeholder knowledge is used,
the level of engagement and influence,
the form of co-creation,
the platform through which engagement takes place,
and the duration of engagement.

The relevant question therefore becomes much more precise than “Were patients or citizens involved?”

Instead, researchers can ask:

When were they involved? What were they asked to contribute? How was their knowledge used? And how much influence did they actually have over decisions?

What did the study find?

To demonstrate the practical application of the framework, the researchers conducted a systematic review following PRISMA guidance.

They analysed 39 scientific articles representing 19 youth-focused public health projects based on co-creation, Youth Participatory Action Research or Community-Based Participatory Research approaches.

The analysis revealed substantial variation in the ways stakeholders were engaged.

One particularly striking finding was that, under the strict definition used in the framework, none of the 19 projects reached the highest level of engagement — “empowerment”, where stakeholders hold genuine decision-making authority.

During the implementation stage, consultation and involvement were the most frequent levels of engagement, while consultation was also the most common approach during evaluation.

This finding matters.

It demonstrates that describing a project as “co-created” does not automatically mean that the people for whom an intervention is being developed have meaningful power to shape it.

Participation should not end when the research ends

Another important finding concerned dissemination and reporting.

Only 4 of the 19 projects included a reporting stage extending beyond conventional academic publication.

In some cases, young stakeholders were involved in presenting findings, communicating results within their communities, or developing dissemination materials and practical tools. Overall, however, stakeholder involvement in the final stages of the research process remained limited.

This is highly relevant to health research.

People who contribute their lived experience, time and knowledge to a study should not be considered merely a source of data. They can also play an important role in interpreting findings, shaping key messages and helping return knowledge to the communities from which it originated.

From patient participant to patient co-creator

This discussion has particular relevance for cancer research and cancer care.

Patients and caregivers hold a form of knowledge that clinical evidence alone cannot provide: the lived experience of illness and care.

They understand what treatment means in everyday life; where administrative, social or practical barriers interfere with care; whether a digital health service is genuinely understandable and accessible; which questions remain unanswered; and which outcomes actually matter to the people living with cancer.

Using this knowledge is not simply a matter of representation.

It is a matter of research quality.

For a patient-support organisation such as Kapa3, co-creation therefore means more than inviting patients into an existing process. It requires creating the conditions in which lived experience can become knowledge, knowledge can shape design, and design can ultimately lead to more relevant, accessible and person-centred services.

A framework for planning future research

The authors emphasise that the Co-creation Roles Framework may be valuable not only for describing completed research, but also for planning and evaluating future projects.

Research teams may use it prospectively to clarify stakeholder roles from the beginning, while funders, ethics committees and scientific journals could potentially use such structured approaches to assess how clearly and meaningfully stakeholder participation has been planned and reported.

At the same time, the framework should not yet be regarded as a definitive standard.

The authors explicitly call for external validation across diverse co-creation settings. They also recognise an important limitation: non-academic stakeholders were not directly involved in developing the framework itself, which may limit its sensitivity to some experiential and contextual understandings of stakeholder roles.

Recognising these limitations is itself an important part of advancing more rigorous participatory research.

The next challenge: not simply more participation, but more meaningful participation

Co-creation should not become another box to tick in a research proposal.

The more important challenge is to be able to demonstrate:

who had a voice, when that voice was heard, how it influenced decisions and what ultimately changed because of that contribution.

As healthcare moves towards more participatory, person-centred and digitally supported models of care, the shift from research about patients to research with patients, and ultimately towards research shaped together with patients, may become one of the defining requirements for research that is both scientifically robust and genuinely relevant to people’s lives.

Scientific source

Messiha K, Chinapaw MJM, Ket JCF, Wink RI, Altenburg TM. Development and application of a framework for classifying stakeholder roles in co-creation research: a Health CASCADE study. Journal of Public Health. Published 19 August 2026. DOI: 10.1007/s10389-026-02881-2.

Messiha_et_al-2026-Journal_of_Public_Health

Kapa3 joins PERIFORMANCE: From Information to Trust in Cancer Care

Kapa3 – Cancer Guidance Centre is pleased to announce that its proposal, “From Information to Trust: MYRTO Patient & Citizen Lab for Equal Access in Cancer Care,” has been selected for funding under the PERIFORMANCE Open Call for Bottom-Up Stakeholder Engagement Initiatives in Cancer Research & Care.

The initiative places patients, caregivers, healthcare and social care professionals, civil society organisations and local communities at the heart of the process, creating a participatory framework for the ethical, trustworthy and inclusive use of AI-enabled cancer navigation.

Putting patients and citizens at the centre

The project is closely linked to MYRTO, Kapa3’s AI-enabled digital social assistant designed to support people affected by cancer in navigating health, social care, administrative procedures and rights-related information.

PERIFORMANCE funding will not support the core technical development of MYRTO. Instead, the project will focus on building the participatory, educational and ethical layer around the tool, ensuring that its future development is shaped by the real needs, experiences and expectations of the people who will use it.

This approach reflects a key principle for Kapa3: technology should not replace human care. When designed responsibly, however, it can become a powerful tool for improving access, empowerment and equality.

From local communities to a national dialogue

The engagement pathway will include regional listening activities, a thematic focus on vulnerable and underrepresented groups, and a central MYRTO Patient & Citizen Lab in Athens.

Particular attention will be given to caregivers, older patients, migrants, people with disabilities, people with low health or digital literacy, socially vulnerable groups and people living far from specialised oncology services.

The Athens Lab will be integrated into Kapa3’s national conference “Equality in Access”, creating a space for synthesising regional experiences, identifying trust criteria and collecting patient and caregiver perspectives on AI-supported navigation.

What does trust in AI-supported cancer navigation mean?

At the heart of the project lies a fundamental question:

What does a person need in order to trust a digital tool during one of the most sensitive periods of their life?

Through co-creation and stakeholder engagement, the initiative will explore issues such as:

reliability and clarity of information,
data protection and privacy,
accessibility and digital inclusion,
responsible use of Artificial Intelligence,
prevention of bias and exclusion,
human oversight,
and clear referral pathways to appropriate professionals when human support is needed.

Bringing together science, civil society and lived experience

Kapa3 will coordinate the initiative and lead its design, implementation, facilitation, patient and community outreach, dissemination and reporting.

The project will be supported by a multidisciplinary academic and scientific collaboration network involving the International Hellenic University – Department of Nursing, University of West Attica – Department of Occupational Therapy, Democritus University of Thrace – Department of Social Work, and University of the Peloponnese – Department of Nursing. simasiaAI will provide technical support for MYRTO-related digital materials and the AI navigation environment.

The project is expected to produce practical resources including a Patient Guidance Toolkit, a Trust & Human Escalation Checklist, a Training and Dissemination Package, and an Engagement & Trust Report.

From information to trust

For Kapa3, participation in PERIFORMANCE marks another step towards ensuring that the patient voice is present not only when new services and technologies are evaluated, but from the very beginning of their design.

With MYRTO, the question is no longer simply:

“How can we provide more information?”

It is increasingly:

“How can we turn information into understanding, trust, safety and real access?”

Because responsible digital health innovation begins with people.

Evangeli Bista Joins the PATH Expert Group as an Independent Expert: Bringing the Patient Perspective into the New Era of AI in Cancer Care

A new contribution to the European dialogue on safe, responsible and human-centred Artificial Intelligence in healthcare

Evangeli Bista, Co-founder and Head of Operations and Development of Kapa3 – Cancer Guidance Centre, has been invited to join the Expert Group of the European research and innovation project PATH – Patient AI Treatment Hub as an independent expert.

Her participation is undertaken in a personal and independent capacity, with her professional affiliation to Kapa3 – Cancer Guidance Centre, creating an opportunity to bring into the European dialogue experience gained through direct engagement with people affected by cancer, survivors, caregivers and healthcare professionals. The PATH Terms explicitly define Expert Group members as acting independently rather than as partners, employees, agents or subcontractors of the Consortium.

What is PATH – Patient AI Treatment Hub?

PATH – Patient AI Treatment Hub is a European research and innovation project focused on supporting the safe and effective integration of Artificial Intelligence into cancer care through the development of a secure, interoperable and privacy-preserving digital platform.

The project aims to explore how Artificial Intelligence tools can be safely integrated into cancer-care pathways, supporting healthcare professionals and contributing to more personalised approaches while safeguarding privacy and health data.

At the heart of this effort lies a critical question:

How can technological innovation create meaningful value for patients while preserving trust, human oversight, safety and equity?

Participation in the PATH Expert Group

As a member of the PATH Expert Group, Evangeli Bista will contribute independent expertise, opinions, input, comments and feedback in relation to selected project use cases and activities.

The experience developed through Kapa3’s work can contribute to discussions around issues such as:

patient-centred cancer care,
patient navigation across health and social-care systems,
equitable access to information and services,
health and digital literacy,
health and social rights,
responsible use and protection of health data,
transparency and human oversight in Artificial Intelligence systems,
meaningful involvement of patients and civil society in technology design,
and translating technological innovation into real value for people.

Why the Patient Voice Must Be Part of Innovation

Artificial Intelligence is creating new possibilities for healthcare and cancer care. At the same time, its growing use raises important questions concerning trust, transparency, safety, equitable access and human oversight.

For Kapa3, the development of a digital solution cannot begin solely with the question of what is technologically possible.

It must also ask:

What does the patient actually need?

Can people understand the information they receive?

Do they know where that information comes from?

Can they trust the system?

Is it clear when Artificial Intelligence is being used and when human professional judgement is required?

Could digital inequalities lead to new inequalities in healthcare?

And ultimately, does innovation genuinely improve the experience and pathway of a person facing cancer?

These are questions that we believe should remain at the centre of the European discussion on Artificial Intelligence in healthcare.

Kapa3’s experience in digital health

Evangeli Bista’s participation in the PATH Expert Group comes at a time when Kapa3 is systematically expanding its work in digital health, patient navigation and the responsible use of emerging technologies to support people affected by cancer.

This broader work also includes MYRTO – Digital Navigator for Health and Social Rights, an independent Kapa3 initiative developed to help transform complex and often fragmented information on rights, benefits and administrative procedures into more accessible, structured and evidence-based guidance for patients and caregivers.

MYRTO is not part of PATH, and the two initiatives are independent from one another.

However, the experience of developing patient-facing digital services has reinforced several principles that Kapa3 considers essential:

reliable information, transparent sources, understandable communication, data protection, human oversight and a clear pathway to professional support when technology alone is not enough.

This distinction is also important from an intellectual-property perspective, since the PATH Terms preserve intellectual property that exists independently of the Expert’s Services and is not incorporated into PATH Contributions.

From information to trust

Digital transformation in healthcare is not simply about more data, more algorithms or more applications.

It is about creating greater understanding, better access and stronger trust.

For a person facing cancer, information has value when it can be translated into a meaningful next step.

Technology has value when it reduces — rather than increases — complexity.

And Artificial Intelligence has value when it strengthens, rather than replaces, human care, professional judgement and the patient’s ability to participate meaningfully in decisions affecting their life and health.

A new opportunity to contribute to the European dialogue

For Kapa3, the invitation to Evangeli Bista to participate as an independent expert in the PATH Expert Group represents an important opportunity to bring into the European dialogue experience, needs and concerns emerging from the real-world context of cancer care and patient support.

The objective remains clear:

Artificial Intelligence in healthcare should advance with safety, transparency, responsibility, equitable access and meaningful involvement of the people it is designed to serve.

Because innovation creates real value when it is designed with people and for people.

PATH – Patient AI Treatment Hub | At a glance

Field: Artificial Intelligence and data in cancer care
Project: PATH – Patient AI Treatment Hub
Focus: Safe and effective integration of AI into cancer care through secure, interoperable and privacy-preserving approaches.
Expert Group: Independent external experts providing expertise, opinions, input, comments and feedback to the Project.
Independent Expert: Evangeli Bista
Professional role: Co-founder & Head of Operations and Development
Affiliation: Kapa3 – Cancer Guidance Centre

New Scientific Publication with the Participation of Kapa3: Cancer Survivorship in the Post-COVID-19 Era

New scientific publication involving the Cancer Patient Guidance Center – Kapa3 highlights the significant psychological, social, and functional challenges that people living with and beyond cancer continue to face following the COVID-19 pandemic.

The article, entitled “Cancer Survivorship After COVID-19: Psychological Burden, Symptom Experience, and Social Support,” was published in the international peer-reviewed journal Medicina. It examines psychological distress, symptom experience, quality of life, and the protective role of social support among people affected by cancer.

What Did the Study Examine?

The research involved 162 adults diagnosed with cancer in Greece during the post-COVID-19 period. Participants completed validated questionnaires assessing depression, anxiety, stress, health-related quality of life, and perceived social support.

The results revealed a substantial and persistent psychological burden:

32.1% of participants reported severe or extremely severe depression.
40.1% reported severe or extremely severe anxiety.
29% reported severe or extremely severe stress.

The overall quality of life of participants was found to be moderate. Emotional and social functioning were among the most affected areas, while fatigue, insomnia, breathlessness, and financial difficulties emerged as some of the most significant challenges in everyday life.

The Close Relationship Between Mental Health and Quality of Life

One of the study’s key findings was the strong relationship between psychological distress and poorer quality of life.

Higher levels of depression, anxiety, and stress were associated with:

poorer daily and functional performance;
lower perceived overall health;
greater symptom severity;
increased difficulty in emotional and social functioning.

The results demonstrate that psychological well-being cannot be separated from the physical, social, and practical experience of cancer.

Social Support as a Protective Factor

At the same time, the study underlines the important protective role of social support.

Support from family members, friends, and other significant people was associated with better overall health and functioning, lower levels of depression, anxiety, and stress, and reduced symptom burden.

The findings show that social connection is not simply an additional element of care. It is a meaningful component of recovery, adaptation, and quality of life throughout the cancer journey.

Cancer Survivorship Does Not End When Treatment Is Completed

The findings reinforce the need to move beyond a model of oncology care focused exclusively on treating the disease.

Cancer survivorship requires a comprehensive, person-centred approach that addresses the physical, psychological, social, functional, and financial dimensions of life with and after cancer.

Routine psychological assessment, early identification of emotional distress, timely referral to psycho-oncology services, rehabilitation, social support, and the meaningful involvement of families and caregivers should become integral parts of standard oncology care.

The study also points to the potential value of telehealth and digital support services in improving access to supportive care. At the same time, it highlights inequalities related to digital literacy, healthcare accessibility, and the ability of all patients to benefit equally from digital services.

The experience of the COVID-19 pandemic demonstrated that effective cancer care must be resilient, accessible, multidisciplinary, and capable of maintaining continuity even during periods of crisis.

Head and Neck Cancer: The Importance of Early Diagnosis and Prevention.

July 27 has been designated as World Head and Neck Cancer Day (WHNCD). The initiative was launched on July 27, 2014, during the 5th World Congress of the International Federation of Head and Neck Oncology Societies (IFHNOS) in New York, with the goal of raising awareness, education, and the
promotion of prevention. The declaration is supported by dozens of scientific communities worldwide, governments, and, most notably, the UICC (Union for International Cancer Control).

What is Head and Neck Cancer?
This type of cancer includes tumors located in the oral cavity, the lips, the pharynx, the larynx, the
salivary glands, the thyroid gland, the skin of the region, and the cervix.

In terms of prevalence, it is the fifth most common cancer worldwide. Seventy-five percent of cases are located in the mouth and pharynx, while the most common histological type is squamous cell carcinoma (HNSCC). For example, more specifically in Greece in 2012, 1,350 new cases were recorded, a figure that accounted for 3.3% of all new cancer diagnoses in the country.

Based on these percentages, 30% of cases occur in the tongue, 20% on the lip, 15% on the floor of the
mouth and in the larynx, and 10% in the pharynx.

Risk Factors

Understanding the factors that increase the risk is the first step towards prevention. Everyday habits, such as smoking and alcohol consumption, place a significant strain on the body. In particular, 70 per cent of those affected are long-term smokers, with current smokers facing a 300 per cent higher risk. When
smoking is combined with alcohol, the two have a negative synergistic effect, multiplying the likelihood of developing the disease. At the same time, in recent years there has been an increase in HPV-positive cancers, mainly of the pharynx, which often occur in younger people with no history of smoking or
alcohol consumption. Finally, it is worth noting that up to 25 per cent of cases are observed in patients who have never smoked and have no other known risk factors.

Suspicious lesions and symptoms

Delay in diagnosis is the most unfavourable prognostic factor. Conversely, 85–90 per cent of cases can be
cured if diagnosed at an early stage.

Suspected precancerous lesions

Particular care is required when identifying suspected precancerous lesions in the oral cavity. These
include leukoplakia, a white patch of unknown aetiology that does not flake off, in which, in 20–25 per
cent of cases, cancer or severe dysplasia is present. Even more dangerous is erythroplakia, where the rate
of co-occurrence with cancer or severe dysplasia reaches 90 per cent. At the same time, suspicious lesions
include punctate leukoplakia, as well as any chronic ulcer – that is, a sore that is not caused by any
obvious injury and remains unhealed for more than two weeks.

Symptoms requiring medical assessment

There are also certain suspicious symptoms that necessitate immediate assessment by a doctor. These include any unexplained swelling, lump or puffiness in the mouth or throat area, as well as persistent pain when chewing, swallowing or speaking, or pain that radiates to the ear. Furthermore, symptoms such as hoarseness, a change in the tone of the voice, and unexplained bleeding inside the mouth are signs that
should not be ignored.

Prevention and Screening
Screening is particularly important for people over the age of 45, smokers, people who drink alcohol, or
those with a history of HPV infection. Screening involves four simple steps:
1. Neck: Palpation of the lymph nodes and the thyroid gland.
2. Lips: External examination.
3. Mouth: Examination of the tongue, floor of the mouth, cheeks, gums and soft palate.
4. Pharynx: Examination of the tonsils, soft palate and base of the tongue.

The importance of early intervention

Despite advances in surgery, radiotherapy and chemotherapy, the 5-year survival rate remains at around 60 per cent. Furthermore, treatments for advanced-stage disease can affect patients’ quality of life, causing functional (difficulty speaking, chewing, swallowing and breathing), aesthetic or psychological problems.

The Active Role of Patient Organizations in Shaping Public Policy: How Our Health Advocacy Ef orts Are Put into Action

At the Cancer Patient Guidance Center, we believe that the voices of patients, their families, and the organizations that represent them must be heard loud and clear where decisions are made.

Improving the quality of life for cancer patients, ensuring access to new treatments, and meeting the needs of caregivers are not just requests but rights that are asserted through organized advocacy. To make this a reality, the right tools are needed.

The new “Guide to Mapping Public Consultation Tools”

As part of the “ENERGO – Toward an Open State” project, HIGGS has created a practical guide that maps the available mechanisms for participation at the local, national, and European levels.

This guide serves as a roadmap for Civil Society Organizations (CSOs), providing a detailed overview of:
• How institutional consultation tools function
• The opportunities for organizations to actively participate in policy-making
• The requirements for accessing these mechanisms
• The challenges and limitations, so that our interventions are well-informed and effective

Why might this be of interest to the beneficiaries of our Center?

Participation in shaping public policy is not an abstract concept. In cancer care, it translates into very specific changes:
1. Equal access to care: advocating for better infrastructure, shorter wait times, and free access to innovative medications.
2. Support for caregivers: establishing leave policies, benefits, and support systems for the people who stand by their side
3. Rights in the workplace: protecting cancer patients from discrimination in the workplace during and after treatment.

Summary & Structure of the Public Consultation Tools Guide

The “Public Consultation Tools Guide” was developed as part of the project “ENERGO – Toward an Open State” (implemented by HIGGS and co-funded by the European Union, the Bodossaki Foundation, and the NGO Support Centre). It is a practical reference tool designed to empower civil society organizations (CSOs) by strengthening their capacity for meaningful, evidence-based participation in public policy-making and strategic advocacy.

The guide is organized into the following sections:

1. Introduction & Institutional Landscape: This section presents the framework for the guide’s development, which was based on research and experiential tools involving dozens of civil society organizations. It analyzes the challenges of the institutional landscape, noting that the main obstacle for organizations is not the absence of tools, but rather the fragmentation, lack of visibility, and complexity of existing mechanisms,

2. National Tools for Public Consultation & Participation: maps and presents in detail the tools available in Greece, such as OpenGov, the KEDE & LocalWatch consultation platform, Vouliwatch, the YPEN Participation Platform, the National Register of Procedures (“Mitos”), Open Council & Crowd Participation, as well as Diafania & POTHEN.

3. European Public Consultation & Participation Tools: presents mechanisms for engagement at the European Union level, such as Have Your Say, the European Citizens’ Initiative (ECI), Consul Democracy, Loomio & Decidim, and others.

4. Tool Selection Guide & Conclusions: Provides consistent evaluation criteria (purpose, implementing body, prerequisites, limitations) so that each organization can select the most appropriate tool based on the objective of its engagement.

About the “ENERGO” Project & the PLATO Program

The “ENERGO: Toward an Open State – Participation, Advocacy, and Empowerment of Civil
Society Organizations” project is being implemented as part of the PLATO program, with HIGGS serving as the implementing partner. The PLATO program (“Protecting democracy, human rights, and the rule of law through an open civic space”) aims to strengthen the fundamental rights and values of the EU in both Greece and Cyprus. It is co-funded by the European Union through the Citizens, Equality, Rights and Values (CERV) program, the Bodossaki Foundation, and the NGO Support Center. The Bodossaki
Foundation serves as the coordinator in partnership with the NGO Support Center.

View and download the guiderZT9sW-Οδηγός Εργαλείων Δημόσιας Διαβούλευσης.

Memorandum of Understanding between the University of West Attica—specifically the Department of Occupational Therapy—and the NGO KAPA3.

On Tuesday, June 9, a meeting was held to sign a Memorandum of Understanding between the University of West Attica—specifically the Department of Occupational Therapy—and the NGO KAPA3.

The meeting was attended by the Rector of the University of West Attica, Panagiotis Kaldis Penelope Vlotinou, Assistant Professor in the Department of Occupational Therapy Evangelia Bista, co-founder of the organization, as well as representatives from both organizations, including the interdisciplinary team of KAPA3: Despoina Chrysostomou, Psychologist Katerina Georgiopoulou, Social Worker Yiannis Kontogiorgis, Psychologist, and Eleftheria-Irini Polyzoti, an intern from the Department of Social and Educational Policy, as well as students from the Occupational Therapy Department.

During the meeting, a constructive discussion took place regarding the prospects for cooperation between the two organizations, with the aim of developing joint actions and initiatives that will contribute to strengthening education, research, social contribution, and the connection between the academic community and society.

In this context, it was decided in April to jointly organize a major scientific conference, which will focus on an interdisciplinary and holistic approach to health, on combating social inequalities in healthcare, as well as on the management of chronic disease. The aim of this initiative is to raise community awareness, facilitate the exchange of expertise among professionals and scientific bodies, and disseminate scientific knowledge and information to the general public.

Special mention was made of the innovative work of KAPA3, the digital Health Navigator “Myrto,” a modern artificial intelligence tool currently under development and designed to support cancer patients, their families, and their caregivers. “Myrto” will function as a digital assistant (Chatbot) and Health and Rights Navigator, providing immediate, reliable, and personalized information on health, social welfare, rights, benefits, and available support services. The project aims to empower patients, improve their access to information, and reduce inequalities in health and social care through the use of digital technologies and artificial intelligence applications. The development of “Myrtos” represents a pioneering application of social artificial intelligence in the field of oncology care in Greece and is part of KAPA3’s strategy to promote innovation, accessibility, and the active participation of patients in managing their own health.

The meeting concluded in a particularly positive atmosphere of mutual appreciation and recognition. In this context, the Department of Occupational Therapy at the University of West Attica made a symbolic gesture toward the representative of KAPA3, Evangelia Bista, presenting her with a commemorative gift as a token of appreciation for her many years of valuable social contribution in the field of support for cancer patients. At the same time, as a gesture of hospitality and appreciation, the team was offered a specially produced wine, which is an original creation of the University of West Attica.

There is an urgent need for psychological support for cancer patients. The KAPA3 team explains and advocates for this

There is an urgent need for psychological support for cancer patients. The KAPA3 team explains and advocates for this

Every day, healthcare professionals are called upon to communicate with, assess, and, above all, support people who are going through cancer.

Does cancer affect only physical health, or does it also have a profound impact on a person’s psychological, social, and emotional life? The needs that arise during the course of the illness are many and are often accompanied by the question: “What does the disease really bring to a person’s life?” A cancer diagnosis brings about significant changes in daily life, relationships, social roles, and the way a person perceives themselves and their future.

A cancer diagnosis is an extremely stressful event, often accompanied by feelings of fear, uncertainty, anxiety, and grief. At the same time, patients are called upon to cope with the effects of treatments such as chemotherapy, radiation therapy, and surgery. Changes in physical appearance, fatigue, pain, and limitations in daily functioning can significantly affect their self-esteem and quality of life (Pitman et al., 2018).

Uncertainty regarding the course of the disease and the likelihood of relapse are significant sources of psychological distress. The extent of this phenomenon is reflected in the meta-analysis by Mitchell et al. (2011), which included 94 studies and more than 14,000 cancer patients. According to the results, 16.3% of patients met the diagnostic criteria for major depressive disorder, 10.3% for anxiety disorder, and 19.2% for adjustment disorder.

These data highlight that a significant proportion of cancer patients experience severe psychological distress, a fact that underscores the need for specialized psychological support.

Furthermore, cancer often affects an individual’s family and social relationships. The patient may be forced to limit or abandon professional and social roles, while the family is called upon to adapt to new demands and responsibilities, experiencing significant psychological strain of their own (Northouse et al., 2010).

Cancer patients have an increased need for psychological support, as the disease significantly affects their psychological, social, and emotional functioning. Fear of the disease’s progression, uncertainty about the future, the side effects of treatments, and the possibility of recurrence are major sources of psychological distress. At the same time, the experience of cancer is often accompanied by feelings of loss of control, fear, and emotional distress. The contemporary psycho-oncology literature recognizes that the early identification of psychosocial needs and the provision of appropriate interventions are an integral part of holistic oncology care (Caruso & Breitbart, 2020; Mehnert-Theuerkauf et al., 2023).

Within this context, psychological support is a key component of holistic care for cancer patients. Holistic care refers to a comprehensive approach that takes into account not only the patient’s physical needs but also the psychological, social, and spiritual dimensions of their health. Counseling, psychotherapy, and support groups provide a safe space for expressing emotions and building psychological resilience (National Comprehensive Cancer Network [NCCN], 2024).

At the same time, they help improve adherence to treatment, strengthen cooperation with healthcare professionals, and maintain quality of life. As Holland and Weiss (2008) argue, psychosocial care is an integral part of high-quality oncology care, from diagnosis through the survival phase.

In conclusion, the experience of cancer is a complex and multidimensional process that affects every aspect of a person’s life. Managing the disease is not limited solely to physical treatment but requires the recognition and addressing of the psychological and social needs that arise at every stage. Providing timely and systematic psychological support can empower the patient, improve their ability to adapt to the demands of treatment, and contribute significantly to maintaining their dignity, hope, and quality of life. Psychological care should be regarded as a fundamental right of every cancer patient and as an integral part of modern oncology practice.

Coordination of Psychological and Social Services within the Framework of Psychosocial Care

The care of cancer patients is not limited to treating the disease and its physical effects. The needs that arise during treatment are often multifaceted and concern both the individual’s psychological well-being and practical, social, or financial issues that affect their daily life.

For this reason, effective support requires close collaboration among different healthcare professionals within a shared framework of psychosocial care. Within this framework, the Social Services and Psychological Services operate in a complementary manner, with the shared goal of enhancing the individual’s quality of life and overall adjustment to the experience of illness.

A client’s contact with the service can begin either through the Social Services Department or the Psychological Services Department. During the initial contact, an assessment of the client’s needs is conducted, and information is provided about all available support services.

Regardless of the initial request, the beneficiary is informed about the option of receiving psychological support, as the experience of cancer is often accompanied by heightened psycho-emotional needs that are not always apparent from the first contact. With their consent, an internal referral can be made to the Psychological Services Department for further evaluation and support.

The Psychological Services Department is responsible for the initial assessment, obtaining informed consent, and creating an individual support file. A structured series of sessions is then provided, tailored to the beneficiary’s needs. During this process, issues may arise related to social benefits, employment challenges, financial burdens, disability certification procedures, or other practical needs that significantly impact the daily functioning of the individual and their family. In such cases, and always with the beneficiary’s consent, cooperation with Social Services is initiated, and Social Services assumes responsibility for managing the relevant social and administrative matters.

The collaboration between the two services enables the timely identification of new needs and ensures continuity of care. Social Services focuses on the practical, social, and administrative aspects of support, while Psychological Services focuses on psychological resilience, emotional processing of the experience of the disease, and adaptation to the changes it brings about. The collaboration between the two services allows for a more comprehensive response to the needs of the cancer patient. In this way, a unified framework of psychosocial care is established that provides substantial support to the patient and their support network at all stages of their journey with the disease.

At the same time, regular communication and coordination between the two services allow for the timely identification of new needs and ensure continuity of care. The Social Services Department focuses on the practical, social, and administrative aspects of support, while the Psychological Services Department focuses on psychological resilience, emotional processing of the experience of the disease, and adaptation to the changes it brings about. The collaboration between the two services enables a more comprehensive response to the needs of cancer patients. In this way, a unified framework of psychosocial care is established that provides substantial support to the patient and their support network at all stages of their journey with the disease.

Kapa3 – Cancer Patient Guidance Center

Together, with knowledge, care, and a human touch.

https://www.kapa3.gr/epikoinonia/ by typing “Psychological Support” in the Message box

OR CALL

2105221424 – info@kapa3.gr

Athens: 13 Kostis Palamas Street, 3rd floor, (9:00 AM – 5:00 PM) 6982003282