A standard of CF care in Bulgaria does not exist.
CF patients are hospitalized and treated as pneumonia patients. Very rarely a chest physical therapy may be administered to some hospitalized patients in certain clinics, which consists of massage and clapping on the chest.
More than 10 years ago, before the changes in the Bulgarian healthcare system, there was a small educational program on chest PT for parents in the Sofia clinic. This practice was discontinued in the late 1990s. Currently parents and patients are not being educated by anybody, the clinics do not have programs or staff for that.
Several patients have flutters and Pep masks. Only 4 mothers and 1 patient have been trained how to use them (at the CF Conference in Macedonia last year).
The CF care consists of the following:
1. All patients over age 4 receive nebulized Pulmozyme.
2. All patients receive nebulized NaCl 0,9%.
3. All PA positive patients receive TOBI-300.
4. All patients receive Creon 25.
5. All patients receive generic multavitamin (not specific for CF).
6. Very few patients receive food supplements of the type of Fresobin, as they are paid out of pocket and their price is prohibitive.
7. Parents administer massage and chest PT to their children without prescription or training by a medical professional but according to what they have seen on the Internet or feel may be beneficial.
8. Some pediatric clinics administer IV antibiotics every 4 months regardless of PA status.
9. Patients older than age 18 are the most vulnerable because there aren’t clinics to follow or treat them. There are no periodical lab tests or examinations, no access to physical therapists, no IV therapy.
The lack of multidisciplinary team approach and standard of care results in an average life expectation of 12.5 years. Bulgaria does not have a CF Center. Each specialist treats only within his or her specialty. Care is received mostly from pulmonologists during hospitalization for severe infection.
CF patients are hospitalized and treated as pneumonia patients. Very rarely a chest physical therapy may be administered to some hospitalized patients in certain clinics, which consists of massage and clapping on the chest.
More than 10 years ago, before the changes in the Bulgarian healthcare system, there was a small educational program on chest PT for parents in the Sofia clinic. This practice was discontinued in the late 1990s. Currently parents and patients are not being educated by anybody, the clinics do not have programs or staff for that.
Several patients have flutters and Pep masks. Only 4 mothers and 1 patient have been trained how to use them (at the CF Conference in Macedonia last year).
The CF care consists of the following:
1. All patients over age 4 receive nebulized Pulmozyme.
2. All patients receive nebulized NaCl 0,9%.
3. All PA positive patients receive TOBI-300.
4. All patients receive Creon 25.
5. All patients receive generic multavitamin (not specific for CF).
6. Very few patients receive food supplements of the type of Fresobin, as they are paid out of pocket and their price is prohibitive.
7. Parents administer massage and chest PT to their children without prescription or training by a medical professional but according to what they have seen on the Internet or feel may be beneficial.
8. Some pediatric clinics administer IV antibiotics every 4 months regardless of PA status.
9. Patients older than age 18 are the most vulnerable because there aren’t clinics to follow or treat them. There are no periodical lab tests or examinations, no access to physical therapists, no IV therapy.
The lack of multidisciplinary team approach and standard of care results in an average life expectation of 12.5 years. Bulgaria does not have a CF Center. Each specialist treats only within his or her specialty. Care is received mostly from pulmonologists during hospitalization for severe infection.
Association “Mucoviscidosis” 2010
http://www.lifewithcf.org; e-mail: bam_cf@abv.bg
Mobile: 0899/850441; 0878/916299
http://www.facebook.com/profile.php?id=1697367898#!/pages/BULGARIAN-CYSTIC-FIBROSIS-ASSOCIATION/231796354759
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