YCE patient advocate Ana-Maria Totovina represented the voice of Romanian patients and youth cancer survivors at a conference held at the Romanian Parliament on the National Day of Cancer Survivors hosted by Senator Nicoleta Pauliuc.
Ana presented our work within the European Union Co-funded project European Network of Youth Cancer Survivors, where we lead the Adolescent and Young Adult (AYA) Cancer Care Work Package! As the co-leader of the AYA Work Package, Ana shared insights about the peer visits we conducted, the guided tours to outpatient and inpatient clinics, the group discussions with healthcare professionals, the range of AYA services offered in different hospitals, and the various materials designed for young people. All of these helped us formulate and develop specific recommendations to address the real needs of youth cancer patients and survivors.
Ana’s personal experiences added a layer of vulnerability to the discussion, as she highlighted critical yet often neglected issues regarding the needs of oncology patients. She stressed the importance of recognizing Adolescents and young adults (AYAs) as a distinct group within healthcare, ensuring access to mental health services during and after treatment, preserving fertility for both genders, offering sexual health counseling, and involving patients in interdisciplinary care discussions. Implementing these measures would greatly improve the overall experience for cancer patients.
“I would like to bring to your attention a very important topic to me and to the young patients I’ve worked with: the specific needs of Adolescents and Young Adults (AYAs). As part of my role in coordinating the Adolescent and Young Adult (AYA) Cancer Care Work Package within the European Union Co-funded project European Network of Youth Cancer Survivors, I visited several hospitals in Italy, Belgium, and the Netherlands. There, I observed how the medical system is beginning to adapt to the specific needs of AYAs and involve them in the implementation of new cancer care procedures.
During these visits, 30 young cancer survivors observed the healthcare professionals’ environment, interacted with staff and patients, conducted interviews, and noted specific aspects of care for Adolescent and Young Adult (AYA) Cancer Care. They focused on specific aspects of care for Adolescents and Young Adults (AYAs), including long-term follow-up of late effects and transition from pediatric to adult oncology. After each visit, a structured report was completed, which enabled us to write specific recommendations that directly address and reflect the real needs of AYA patients:
- More specific information tailored to Adolescents and young adults (AYAs)
- Recognizing Adolescents and young adults (AYAs) as a unique group in all healthcare areas
- Accessible Mental Health Care tailored to Adolescents and Young Adults (AYAs), available both during and after treatment.
- Include fertility counselling and treatment options for fertility preservation and reproductive planning before, during, and after cancer treatment.
- Sexual health counselling
- Invest in Training, Education, and Resource Optimization for Healthcare Professionals to provide a more tailored cancer care
- implementation of specific and targeted Adolescents and Young Adults (AYAs) policies and practices
- Engaging Adolescents and Young Adults (AYAs) to participate in Care Discussions and Shared Decision-Making and the list goes on”
Read the full English version of our “Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units” Position Paper HERE.
Read more on our General Report on Adolescent and Young Adult (AYA) Cancer Care HERE.
Watch the video from the “Peer Visit as Research Method” Training in Brussels HERE.
Watch the video from our Peer Visits HERE.