Uruguay 3 project: Expanding diagnosis and knowledge-sharing to transform care
An expanded haemophilia diagnosis and treatment network in northern Uruguay combined with a holistic approach to care makes a life-changing difference.
People living with haemophilia in Uruguay should not have to travel halfway across the country in order to access care. Expanding haemophilia diagnosis and treatment beyond the capital city of Montevideo, on the country’s southern coast, was one objective that motivated Dr Teresa Faguaga from the Tacuarembó Regional Hospital to partner with NNHF in the third Uruguay project. Another was to empower people with haemophilia to take control over their own care. Two and a half years later, these ambitious goals have been achieved.
“Today in Uruguay people are talking a lot more about haemophilia. When people understand the disease and its challenges, they feel empowered to deal with them. It is rewarding to see how patients are now more adherent to treatment and overall how their quality of life has significantly improved. This was the overriding goal of our project and we are overjoyed to see the results,” said Dr Faguaga.
In total, 450 healthcare personnel, teachers, people with haemophilia and their families across northern Uruguay benefitted from the educational activities over the course of the project.
One of the Uruguay 3 project’s key priorities was diagnosis, with the establishment of a haemostasis laboratory at the Tacuarembó Regional Hospital. This was coupled with the organisation of training sessions for the hospital’s laboratory personnel to enable local testing for the type and severity of haemophilia cases.
Training sessions were also held for healthcare professionals from Uruguay’s northern cities of Tacuarembó, Paysandú, Salto, Rivera and Cerro Largo. The objective was to expand knowledge of haemophilia care at a multidisciplinary level including haematology, nursing, physiotherapy, gynaecology, psychology and social work in order to provide local and integrated care to people with haemophilia.
Primary and secondary school teachers were also trained on the importance of quality of life through education for people living with haemophilia, as they must find alternatives to physical effort and foster student’s integration. Finally, promoting awareness of the disease and its economic impacts led to the creation of a wider support network, opening access for many young patients to free public transport and year-round sports activities which help build a healthy lifestyle.
Important efforts were made throughout the project launched in 2017 to develop a closer patient-doctor relationship, thus increasing the adherence to consultations and treatment, and improving care. Several educational activities for people with haemophilia and family members were organised as part of the project on topics such as quality of life, treatment options, nutrition, dental health as well as the importance of exercise.
While the project is now complete, Dr Faguaga sees it as the beginning of a longer-term transformation: “We believe the greatest impact of our project will be in the future. By changing the paradigm today for many young people living with haemophilia, we are opening the door for them to work and lead full lives without disability tomorrow.”