Contributions
Abstract: PB2406
Type: Publication Only
Background
The complexity of haemoglobinopathies, resulting in multi-organ dysfunction, necessitates a carefully integrated care regimen. Unlike normal red cells, diseased cells tend to form clumps and obstruct blood flow. This results in extreme pain crises, severe haemolytic anaemia and chronic damage to vital organs due to oxygen deficiency, infections and iron overload.
Today, because of early preventive screening and treatment in red blood cell clinics, more than ninety percent of patients reach adulthood. With increased life span, patients encounter multiple transitional care episodes. These are particularly challenging since they increase morbidity and mortality. Good transition and access to primary care coupled with a comprehensive care in red blood cell diseases can improve outcomes.
Aims
To understand and to promote successful transfer from pediatric to adult care in the setting of hemoglobinopathies in the Antwerp region.
Methods
Patient demographics: At the University Hospital of Antwerp a total of 80 patients with severe haemoglobinopathies were followed on a routinely base in 2017 on a paediatric ward (n=50) and an adult ward (n=30). Haemoglobinopathies were divided in sickle cell disease (HbSS (n=56); HbSC (n=10) and HbS/β-thalassemia (n=7) (n=73) and β-thalassemia major (n=7).
Methods: We did a survey amongst 5 adolescents (15 to 18 years) and 5 young adults (18 to 30 years) during their transition to adult care. All patients were asked what has to be improved in the current protocol of transititional care to enhance their quality of self-care.
Results
All patients asked for a mobile medical card and an illustrated booklet with crucial information to help them to communicate their physical, psychological and social needs.
This card with medical history, chronic medication, transplant related topics and hematology contact information improves communication with caregivers and healthcare professionals worldwide.
Also the card has to expanded with a personal pain plan, sport advice and information on specific situations at school and professional environments.
To make sure that the information is valuable we collaborate intensively with some of the dedicated young patients, to move forward with this patient-centered care project.
Conclusion
Successful transfer from paediatric to adult care has its foundation in a strong collaboration amongst the adolescents and young adults, their family and friends and the health care system to support building skills and positive disease management.
Patients are encouraged to become empowered about their health and appropriate medical care. This is especially important in the new and rapidly evolving era of new therapies like T-cell depleted haplo-identical haematopoietic stem cell transplantation for severe and advanced stage sickle cell disease and gene therapy for β-thalassaemia.
Incorporation in daily medical practice of patient-centered care evolves quickly and helps future clinical trials for haemoglobinopathies in Belgium.
Session topic: 27. Sickle cell disease
Keyword(s): Hemoglobinopathy, Quality of Life, sickle cell disease
Abstract: PB2406
Type: Publication Only
Background
The complexity of haemoglobinopathies, resulting in multi-organ dysfunction, necessitates a carefully integrated care regimen. Unlike normal red cells, diseased cells tend to form clumps and obstruct blood flow. This results in extreme pain crises, severe haemolytic anaemia and chronic damage to vital organs due to oxygen deficiency, infections and iron overload.
Today, because of early preventive screening and treatment in red blood cell clinics, more than ninety percent of patients reach adulthood. With increased life span, patients encounter multiple transitional care episodes. These are particularly challenging since they increase morbidity and mortality. Good transition and access to primary care coupled with a comprehensive care in red blood cell diseases can improve outcomes.
Aims
To understand and to promote successful transfer from pediatric to adult care in the setting of hemoglobinopathies in the Antwerp region.
Methods
Patient demographics: At the University Hospital of Antwerp a total of 80 patients with severe haemoglobinopathies were followed on a routinely base in 2017 on a paediatric ward (n=50) and an adult ward (n=30). Haemoglobinopathies were divided in sickle cell disease (HbSS (n=56); HbSC (n=10) and HbS/β-thalassemia (n=7) (n=73) and β-thalassemia major (n=7).
Methods: We did a survey amongst 5 adolescents (15 to 18 years) and 5 young adults (18 to 30 years) during their transition to adult care. All patients were asked what has to be improved in the current protocol of transititional care to enhance their quality of self-care.
Results
All patients asked for a mobile medical card and an illustrated booklet with crucial information to help them to communicate their physical, psychological and social needs.
This card with medical history, chronic medication, transplant related topics and hematology contact information improves communication with caregivers and healthcare professionals worldwide.
Also the card has to expanded with a personal pain plan, sport advice and information on specific situations at school and professional environments.
To make sure that the information is valuable we collaborate intensively with some of the dedicated young patients, to move forward with this patient-centered care project.
Conclusion
Successful transfer from paediatric to adult care has its foundation in a strong collaboration amongst the adolescents and young adults, their family and friends and the health care system to support building skills and positive disease management.
Patients are encouraged to become empowered about their health and appropriate medical care. This is especially important in the new and rapidly evolving era of new therapies like T-cell depleted haplo-identical haematopoietic stem cell transplantation for severe and advanced stage sickle cell disease and gene therapy for β-thalassaemia.
Incorporation in daily medical practice of patient-centered care evolves quickly and helps future clinical trials for haemoglobinopathies in Belgium.
Session topic: 27. Sickle cell disease
Keyword(s): Hemoglobinopathy, Quality of Life, sickle cell disease