Adjustments can be made that would improve and streamline hemophilia care, according to a panel of experts whose discussion was published in Blood Transfusion.
Various policy recommendations have been made for improvements to quality of life for patients of hemophilia, according to an article published in the quarterly journal Blood Transfusion.
Researchers from the National Blood Centre in Rome, Italy invited a panel of experts to discuss recommendations to monitor indicators of hemophilia in order to reduce the social health burden of inherited bleeding disorders like hemophilia and its complications.
The panel included representatives from various patient representative organizations who were charged with reviewing the current practices to identify the best and most effective ways to clinically manage hemophilia patients.
The first observation was that multidisciplinary integrated approaches result in optimal healthcare provisions for patients. A patient survey from Italy indicated 52 percent of citizens need to travel between 101 and 500 km (62 and 310 miles, respectively) for access to healthcare services. In some regions, patients had to travel over 500 km (310 miles) to attend hemophilia centers with an optimal level of care.
Because of this panelists advised an interdisciplinary method of treatment be developed in order to ensure timely and nearby treatment. They believed by bridging the gap between adult and pediatric service hemophilia centers and specialized units, more frequent adequate care would be provided.
Secondly, the panelist analyzed networking protocols for emergency care among emergency departments versus self administered care. Crucial factors that prevent life threatening and long term complications include appropriate and timely treatment of patients and administration of coagulation factors, and by improving the timeliness of these factors, overall care can be improved.
The panelists proposed 24 hour hemorrhagic emergency management centers and the availability of phone consultations with experts of inherited blood disorders. Regions across Italy would be expected to share their resources and updates in order to ensure the guidelines are being adhered to.
The panelists discussed a myriad of other improvements that would aid hemophilia patients in Italy. Home therapy improvements could stem from immediate administration of coagulation factors, which would minimize long term complications. Another important feature the panelists proposed was an interoperable registry of databases which monitor inherited blood diseases, in order to strengthen data collection and surveillance.
The experts also reviewed replacement therapy supply and distribution methods and determined the differences in demand in various regions should be explained in order to streamline costs and distributions. This could be accomplished through data sharing among the regional blood centers they previously proposed.
An additional change the experts examined was the training of professionals in these disorders: it has been noted that young professionals have not been interested in these disorders, and the panelists advised garnering more attention and interest.
“In designing a sustainable and efficacious network for rare disorders, such as inherited blood disorders, a continuous trade off between the need to provide services close to the home of the patient and the need to provide services with a high level of expertise and experience present an inevitable conflict,” the authors concluded.
“If on the one hand, low volumes do not justify the presence of a comprehensive hemophilia center on the territory, on the other hand basic services are necessary to guarantee timeliness of intervention.”