Contributions
Abstract: PB1816
Type: Publication Only
Background
Since 2008 all patients with severe forms of haemophilia A and B aged 0-18 have been included in the programme of prophylactic administration of the missing factor.
Aims
The programme consists of: ensuring the availability of the factor, delivering the factor to patients homes and collecting the waste after the procedure. In order to improve the independence of patients and their families, since 2014 qualified nurses have been educating and instructing them how to self-administer the factor intravenously and to central venous catheters. Such training take place throughout Poland.
Methods
Materials and Methods Two nurses, who were employed by the Shire company, at the request of a physician and after receiving parental consent, performed the training at patients houses where they showed how to apply the missing factor using. There were 560 dummies educational visits. Another role of these nurses was to train medical staff and staff in schools close to the patients’ places of residence.150 training sessions took place (45 of them took place in schools and 105 in hospitals). In addition, those nurses also took part in conferences about haemophilia intended for patients and medical staff.
Results
Results The quality of life of our patients has significantly improved since introducing such training. Self-administering the missing factor by parents or even patients themselves is not a problem anymore. As a result of participating in the training, our patients became more independent and level-headed.
Conclusion
The training of self-administering the missing factor by patients and parents, as well as by teachers and medical staff close to the patients’ places of residence is an important part of improving the quality of their lives
Session topic: 34. Bleeding disorders (congenital and acquired)
Keyword(s): Hemophilia
Abstract: PB1816
Type: Publication Only
Background
Since 2008 all patients with severe forms of haemophilia A and B aged 0-18 have been included in the programme of prophylactic administration of the missing factor.
Aims
The programme consists of: ensuring the availability of the factor, delivering the factor to patients homes and collecting the waste after the procedure. In order to improve the independence of patients and their families, since 2014 qualified nurses have been educating and instructing them how to self-administer the factor intravenously and to central venous catheters. Such training take place throughout Poland.
Methods
Materials and Methods Two nurses, who were employed by the Shire company, at the request of a physician and after receiving parental consent, performed the training at patients houses where they showed how to apply the missing factor using. There were 560 dummies educational visits. Another role of these nurses was to train medical staff and staff in schools close to the patients’ places of residence.150 training sessions took place (45 of them took place in schools and 105 in hospitals). In addition, those nurses also took part in conferences about haemophilia intended for patients and medical staff.
Results
Results The quality of life of our patients has significantly improved since introducing such training. Self-administering the missing factor by parents or even patients themselves is not a problem anymore. As a result of participating in the training, our patients became more independent and level-headed.
Conclusion
The training of self-administering the missing factor by patients and parents, as well as by teachers and medical staff close to the patients’ places of residence is an important part of improving the quality of their lives
Session topic: 34. Bleeding disorders (congenital and acquired)
Keyword(s): Hemophilia