We publish the largest European study on the impact of chronic GvHD

At the Josep Carreras Leukaemia Foundation, we have published the largest study conducted to date in Europe on the impact of chronic graft-versus-host disease (chronic GvHD), a frequent complication following bone marrow transplantation that profoundly affects the lives of patients and their families.

The findings of the report show that seven out of ten patients with chronic GvHD experience a severe impact on their daily lives, and that more than 80% have had to make significant changes to their everyday routines, such as giving up social or leisure activities, modifying exercise habits, or adapting their diet. In addition, 65% of patients report new physical limitations, including extreme fatigue or difficulty carrying out everyday physical efforts.

With this study, we wanted to go beyond the physical impact of the disease and also capture its emotional, social and occupational consequences. Before transplantation, 88% of patients were working, while after transplantation only 22% remain in employment, most of them with significant limitations. Chronic GvHD is, in fact, responsible for one in every five cases of work-related disability.

For the first time, we have specifically included the experiences of caregivers, the majority of whom are women. The study concludes that 82% have experienced direct occupational consequences as a result of caring for a family member with chronic GvHD, and that the impact on mental health and household finances is particularly significant.

Despite the severity and long-term nature of the condition, six out of ten patients feel that chronic GvHD remains poorly understood and insufficiently recognised, both socially and within the medical and clinical setting. For this reason, the study highlights the need to move towards an integrated, multidisciplinary approach that addresses all dimensions of the disease: clinical, emotional, social and functional.

On Wednesday, 11 February, we presented this study at a press breakfast in Barcelona, where we shared its main conclusions and underlined the importance of raising awareness of a condition that too often remains overshadowed after transplantation.

At the Josep Carreras Leukaemia Foundation, we continue to work to ensure that chronic GvHD is recognised as a disease in its own right, and that people living with it and their families receive the care, support and resources they need.

Access the full report