SPX Talks: Youth and leukaemia, a challenge for the health system
Watch the replay of our SPX Talk in Spanish on 12 February 2025 with Alexandra Carpentier de Changy Meca, head of the Patient Experience programme of the Josep Carreras Leukaemia Foundation, in which she talks about the challenges faced by young people with leukaemia when they do not fit into the patterns of care designed for children or older adults. The session was moderated by Patricia Ripoll, patient and president of Fundación Visible.
Cancers in young people have unique characteristics that differentiate them from those that affect children or older adults. Children and adults have cancers related to growth and ageing, respectively. However, in young people, treatments are often less tailored to their specific needs due to a lack of consistency and standardisation in data collection.
Cancers in young people: the forgotten ones
Alexandra Carpentier is the head of the Patient Experience and Shelter Programme at the Josep Carreras Leukaemia Foundation. With a career focused on patient experience and digital marketing in the health sector, she leads programmes that go beyond the medical field to offer comprehensive support to patients with haematological diseases. The Josep Carreras Foundation is committed to design and implement strategies that significantly improve the quality of life of patients and their families.
Cancers in young people have unique characteristics that differentiate them from those that affect children or older adults. Children and adults have cancers related to growth and ageing, respectively. However, in young people, treatments are often less tailored to their specific needs due to a lack of consistency and standardisation in data collection.
Although the survival curve is steepening in both children and adults, in young people there is less pronounced progress. The main reasons for this include:
- Low participation in clinical trials.
- Lack of standardised treatment approaches; young patients often receive paediatric or adult treatments without an age-specific protocol.
- Delays in diagnosis.
- Lack of data-based evidence.
- Unique psychosocial problems that require treatment adjustments.
In response to these needs, the first unit for adolescents and young adults with cancer was launched in Spain two years ago. This innovative approach involves multidisciplinary teams from haematologists and oncologists specialising in adults and children, treating patients up to the age of 25 with a more personalised approach.
The Josep Carreras Foundation launched the report ‘Young People and Leukaemia’, a study that addresses the impact of the disease on young patients and their difficulties in reintegrating into normal life. Some of the key findings include:
- After two years on average with the disease, only 1 in 2 patients managed to return to work, and 30% did so under different conditions.
- 46% had to change their residence and 22% returned to their parents’ home.
- 78% of respondents would have liked to receive more information on sexuality-related issues.
- Only 34% of patients had frozen eggs or sperm prior to treatment, highlighting the lack of information and support on this crucial issue.
The profile of the study participants includes people diagnosed between the ages of 18 and 39 with acute leukaemias or aggressive lymphomas, treated at adult referral hospitals. Many have received bone marrow transplantation or immunotherapies, and have undergone high-intensity protocols with multiple sessions of chemotherapy, radiotherapy and immunotherapy. These treatments generate long periods of isolation and multiple readmissions, affecting not only the patient, but also their family and social environment.
In addition to the general study, the Josep Carreras Foundation has initiated a project focused on analysing in depth the experience of young leukaemia patients in a specific hospital: the Hospital Clínic in Barcelona. This analysis focuses not only on the patient journey, but also on the perspective of the healthcare professionals involved in their treatment.
As these patients eventually move into the primary care system, the study seeks to assess what the transition is like and what challenges they face in the follow-up of their disease. As a result, the Foundation aims to develop a ‘White Paper’ that will serve as a reference to understand the current situation of these patients in Spain and generate recommendations based on the evidence gathered. In addition to this, this project has a very special feature; it is validated by a committee of patient experts.
To ensure that the voices of those affected are heard, this project has a committee of 12 ex-patients, with gender parity and ages between 28 and 45, who contribute their testimony and experience to improve care and support for future patients.
With this type of initiative, the Josep Carreras Foundation continues to advance in its commitment to improve the quality of life of young leukaemia patients, ensuring that their needs are recognised and effectively addressed.
SPX Talks: Wednesdays for Patient Experience
The SPX Talks are short, free, online discussions with a key player in the field of patient experience, enabling you to find out more and exchange views on a range of subjects. Check out the schedule of upcoming guests on the SPX Talks page!
