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life expectancy
- Thread starter nicolaj
- Start date
England's life expectancy is 30, as quote from the CF trust.
In the US, life expectancy is 36.8 years.
Denmark is almost 50 and I think their climate is similar to that of England from what I understand.
Not due to the climate - we have very cold climates in the US. People who go to the CF Center in Minnesota (very cold) have an average expectancy of almost 50.
In the US, life expectancy is 36.8 years.
Denmark is almost 50 and I think their climate is similar to that of England from what I understand.
Not due to the climate - we have very cold climates in the US. People who go to the CF Center in Minnesota (very cold) have an average expectancy of almost 50.
England's life expectancy is 30, as quote from the CF trust.
In the US, life expectancy is 36.8 years.
Denmark is almost 50 and I think their climate is similar to that of England from what I understand.
Not due to the climate - we have very cold climates in the US. People who go to the CF Center in Minnesota (very cold) have an average expectancy of almost 50.
In the US, life expectancy is 36.8 years.
Denmark is almost 50 and I think their climate is similar to that of England from what I understand.
Not due to the climate - we have very cold climates in the US. People who go to the CF Center in Minnesota (very cold) have an average expectancy of almost 50.
England's life expectancy is 30, as quote from the CF trust.
In the US, life expectancy is 36.8 years.
Denmark is almost 50 and I think their climate is similar to that of England from what I understand.
Not due to the climate - we have very cold climates in the US. People who go to the CF Center in Minnesota (very cold) have an average expectancy of almost 50.
In the US, life expectancy is 36.8 years.
Denmark is almost 50 and I think their climate is similar to that of England from what I understand.
Not due to the climate - we have very cold climates in the US. People who go to the CF Center in Minnesota (very cold) have an average expectancy of almost 50.
from <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/pub/edition_8/English/11.asp
">http://www.cfww.org/pub/edition_8/English/11.asp
</a>
January 1, 2006 there were 434 CF-patients in Denmark. The incidence is 12-15 CF children per year. All are in centralized care at two CF-centres; 287 at the Copenhagen CF Centre at Rigshospitalet (Copenhagen University Hospital) and 147 at the Aarhus CF centre at the Aarhus University Hospital.
The Copenhagen Centre was established as early as 1968 by Dr. E.W. Flensborg. When he retired in 1982, his position at the Copenhagen Centre was taken over by Dr. Christian Koch, who passed away in 2004 and was followed by Dr Tania Pressler. Professor Niels Hoiby is chairman of the Department of Clinical Microbiology at the Copenhagen Centre. The Aarhus Centre was established in 1990, professor P. O. Schiötz being the chairman of the centre.
For over 30 years, the Copenhagen Centre has had a leading international role in CF care. The overall perspective in the care has been that bacterial lung infections are the most important factors responsible for the progression of the lung infections among CF-patients. Consequently, microbiology and infection control have been cornerstones in the "Copenhagen CF treatment" approach.
All patients at the Copenhagen CF Centre are seen for monthly controls which include clinical observation, lung function test, height, weight, microbiological examinations of sputum etc. Bacterial infections of the lower respiratory tract are diagnosed by microscopy and culture of secretions from the respiratory tract.
The Copenhagen principles for treatment of bacteria in CF are:
. Positive bacteria cultures are treated with antibiotics whether there are clinical symptoms or not.
. Bacteria such as Staphylococcus aureus, Haemophilus influenzae and intermittently colonized Pseudomonas aeruginosa (PA) infection should be eradicated when present in the lower respiratory tract whether there are clinical symptoms or not. (S. aureus infection is still the most frequently isolated pathogen in CF children but due to efficient antibiotic treatment it is not considered to be a problem among Danish CF patients).
. Chronic PA infection, defined as persistent presence of PA for at least 6 consecutive months, or less when combined with the presence of 2 or more precipitating antibodies against PA, is treated with antibiotics (IV courses) regularly 4 times/year whether there are clinical symptoms or not, plus daily antibiotic inhalations.
. All patients are offered daily Pulmozyme inhalation.
Milestones in Danish CF Treatment
In 1976, a Danish survey showed that a CF patient had 50% chance of surviving 5 years with chronic PA infection. In consequence, the treatment regime against chronic PA infection was changed radically by Dr. Flensborg and elective IV antibiotic courses were introduced, regardless of clinical symptoms when the level of precipitating antibodies against PA reached 2 or higher or the presence of PA for at least 6 consecutive months. As a result of the new treatment regime, the survival among PA chronically infected CF patients increased tremendously over the years. In 1987 daily antibiotic inhalations were added to the treatment.
In the first years with intensive anti-PA IV treatment the risk of cross-infection was high because the wards with inpatients receiving IV treatment were near the outpatient clinic visited by all CF patients who were also not segregated according to presence or absence of PA in their sputum. In 1981, the Copenhagen CF Centre was reconstructed, separating the wards and the outpatient clinic. Segregation (cohort isolation) was introduced, segregating PA patients from non-PA patients in the wards, in the outpatient clinic, and during social events. However, an epidemic spread of a multiresistant PA strain in 1983 led to further segregation of patients infected with PA sensitive strain from patients with multiresistant strain.
After the introduction of cohort isolation in 1981 the incidence and the prevalence of both intermittent PA colonization and of chronic PA infection decreased significantly.
Cross-infection
Today, the Copenhagen CF Centre segregates patients based on identification of the following bacteria from the lower airways:
1) No PA
2) Intermittent PA infection
3) Chronic infection with antibiotic sensitive PA strain
4) Chronic infection with multiply resistant PA strains
5) Intermittent or chronic infection with organisms belonging to the Burkholderia cepacia complex (each patients with B. cepacia complex forms a unique cohort)
6) Achromobacter xylosoxidans infection
The principles of cross infection and segregation are also strictly practised at social events arranged by the Danish CF Association. The overall aim of cohort isolation is not to expose any patient to bacteria which can turn into a chronic infection among CF patients and thereby increase the patients' need for treatment and a possible reduction of the life expectancy. This policy is well accepted and understood by both CF patients and families, even though the segregation policy may restrict patients in their social activity with other CF patients. (Please see article "Prevention of Cross-Infections in CF" by Claus Moser and Niels Høiby in Issue 7, Volume 1-2006).
The Danish CF Association (CFDK)
CFDK was founded in 1967 by a group of parents, grandparents and medical doctors. The first chairman of the association was the founder of the Copenhagen CF Centre Dr. EW Flensborg. Since 2004, Bjarne Hansen, a top executive from the business community is the chairman of the association. The Board of Directors consists of patients, parents and medical doctors. Administration and patient advocacy is carried out by 3 staff members. CFDK's mission and objectives are the well-known issues: to support the patients, to support the research and to disseminate knowledge of CF.
Racing cyclists in CF shirts exhibiting the words "cystic fibrosis" is a helpful tool to disseminate information on CF and to attract media, in particular when one of the cyclists is a PWCF - here the Dane Henrik Gade (CF, 15 yrs), who raced against Richard Virengue in 116 km RITTER Classic Cycle Race 2005.
In 1998, "Code of Conduct" regarding donations was introduced by the Danish CF Association (www.cff.dk - Code of Conduct). Besides fundraising, patient camps, continued patient advocacy, guidance, and family courses and information. The agenda includes:
. Lobbying for continued optimal CF care and social welfare
. Quality control of CF care
. Maintaining positive media coverage
. Fund-raising, participation with local chapters, and recruiting new members to take action
. Identifying and making a continuous assessment of the patient group's problems, needs, wishes
. Supporting the need for biotech research and development
. Addressing ethical issues such as carrier screening
">http://www.cfww.org/pub/edition_8/English/11.asp
</a>
January 1, 2006 there were 434 CF-patients in Denmark. The incidence is 12-15 CF children per year. All are in centralized care at two CF-centres; 287 at the Copenhagen CF Centre at Rigshospitalet (Copenhagen University Hospital) and 147 at the Aarhus CF centre at the Aarhus University Hospital.
The Copenhagen Centre was established as early as 1968 by Dr. E.W. Flensborg. When he retired in 1982, his position at the Copenhagen Centre was taken over by Dr. Christian Koch, who passed away in 2004 and was followed by Dr Tania Pressler. Professor Niels Hoiby is chairman of the Department of Clinical Microbiology at the Copenhagen Centre. The Aarhus Centre was established in 1990, professor P. O. Schiötz being the chairman of the centre.
For over 30 years, the Copenhagen Centre has had a leading international role in CF care. The overall perspective in the care has been that bacterial lung infections are the most important factors responsible for the progression of the lung infections among CF-patients. Consequently, microbiology and infection control have been cornerstones in the "Copenhagen CF treatment" approach.
All patients at the Copenhagen CF Centre are seen for monthly controls which include clinical observation, lung function test, height, weight, microbiological examinations of sputum etc. Bacterial infections of the lower respiratory tract are diagnosed by microscopy and culture of secretions from the respiratory tract.
The Copenhagen principles for treatment of bacteria in CF are:
. Positive bacteria cultures are treated with antibiotics whether there are clinical symptoms or not.
. Bacteria such as Staphylococcus aureus, Haemophilus influenzae and intermittently colonized Pseudomonas aeruginosa (PA) infection should be eradicated when present in the lower respiratory tract whether there are clinical symptoms or not. (S. aureus infection is still the most frequently isolated pathogen in CF children but due to efficient antibiotic treatment it is not considered to be a problem among Danish CF patients).
. Chronic PA infection, defined as persistent presence of PA for at least 6 consecutive months, or less when combined with the presence of 2 or more precipitating antibodies against PA, is treated with antibiotics (IV courses) regularly 4 times/year whether there are clinical symptoms or not, plus daily antibiotic inhalations.
. All patients are offered daily Pulmozyme inhalation.
Milestones in Danish CF Treatment
In 1976, a Danish survey showed that a CF patient had 50% chance of surviving 5 years with chronic PA infection. In consequence, the treatment regime against chronic PA infection was changed radically by Dr. Flensborg and elective IV antibiotic courses were introduced, regardless of clinical symptoms when the level of precipitating antibodies against PA reached 2 or higher or the presence of PA for at least 6 consecutive months. As a result of the new treatment regime, the survival among PA chronically infected CF patients increased tremendously over the years. In 1987 daily antibiotic inhalations were added to the treatment.
In the first years with intensive anti-PA IV treatment the risk of cross-infection was high because the wards with inpatients receiving IV treatment were near the outpatient clinic visited by all CF patients who were also not segregated according to presence or absence of PA in their sputum. In 1981, the Copenhagen CF Centre was reconstructed, separating the wards and the outpatient clinic. Segregation (cohort isolation) was introduced, segregating PA patients from non-PA patients in the wards, in the outpatient clinic, and during social events. However, an epidemic spread of a multiresistant PA strain in 1983 led to further segregation of patients infected with PA sensitive strain from patients with multiresistant strain.
After the introduction of cohort isolation in 1981 the incidence and the prevalence of both intermittent PA colonization and of chronic PA infection decreased significantly.
Cross-infection
Today, the Copenhagen CF Centre segregates patients based on identification of the following bacteria from the lower airways:
1) No PA
2) Intermittent PA infection
3) Chronic infection with antibiotic sensitive PA strain
4) Chronic infection with multiply resistant PA strains
5) Intermittent or chronic infection with organisms belonging to the Burkholderia cepacia complex (each patients with B. cepacia complex forms a unique cohort)
6) Achromobacter xylosoxidans infection
The principles of cross infection and segregation are also strictly practised at social events arranged by the Danish CF Association. The overall aim of cohort isolation is not to expose any patient to bacteria which can turn into a chronic infection among CF patients and thereby increase the patients' need for treatment and a possible reduction of the life expectancy. This policy is well accepted and understood by both CF patients and families, even though the segregation policy may restrict patients in their social activity with other CF patients. (Please see article "Prevention of Cross-Infections in CF" by Claus Moser and Niels Høiby in Issue 7, Volume 1-2006).
The Danish CF Association (CFDK)
CFDK was founded in 1967 by a group of parents, grandparents and medical doctors. The first chairman of the association was the founder of the Copenhagen CF Centre Dr. EW Flensborg. Since 2004, Bjarne Hansen, a top executive from the business community is the chairman of the association. The Board of Directors consists of patients, parents and medical doctors. Administration and patient advocacy is carried out by 3 staff members. CFDK's mission and objectives are the well-known issues: to support the patients, to support the research and to disseminate knowledge of CF.
Racing cyclists in CF shirts exhibiting the words "cystic fibrosis" is a helpful tool to disseminate information on CF and to attract media, in particular when one of the cyclists is a PWCF - here the Dane Henrik Gade (CF, 15 yrs), who raced against Richard Virengue in 116 km RITTER Classic Cycle Race 2005.
In 1998, "Code of Conduct" regarding donations was introduced by the Danish CF Association (www.cff.dk - Code of Conduct). Besides fundraising, patient camps, continued patient advocacy, guidance, and family courses and information. The agenda includes:
. Lobbying for continued optimal CF care and social welfare
. Quality control of CF care
. Maintaining positive media coverage
. Fund-raising, participation with local chapters, and recruiting new members to take action
. Identifying and making a continuous assessment of the patient group's problems, needs, wishes
. Supporting the need for biotech research and development
. Addressing ethical issues such as carrier screening
from <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/pub/edition_8/English/11.asp
">http://www.cfww.org/pub/edition_8/English/11.asp
</a>
January 1, 2006 there were 434 CF-patients in Denmark. The incidence is 12-15 CF children per year. All are in centralized care at two CF-centres; 287 at the Copenhagen CF Centre at Rigshospitalet (Copenhagen University Hospital) and 147 at the Aarhus CF centre at the Aarhus University Hospital.
The Copenhagen Centre was established as early as 1968 by Dr. E.W. Flensborg. When he retired in 1982, his position at the Copenhagen Centre was taken over by Dr. Christian Koch, who passed away in 2004 and was followed by Dr Tania Pressler. Professor Niels Hoiby is chairman of the Department of Clinical Microbiology at the Copenhagen Centre. The Aarhus Centre was established in 1990, professor P. O. Schiötz being the chairman of the centre.
For over 30 years, the Copenhagen Centre has had a leading international role in CF care. The overall perspective in the care has been that bacterial lung infections are the most important factors responsible for the progression of the lung infections among CF-patients. Consequently, microbiology and infection control have been cornerstones in the "Copenhagen CF treatment" approach.
All patients at the Copenhagen CF Centre are seen for monthly controls which include clinical observation, lung function test, height, weight, microbiological examinations of sputum etc. Bacterial infections of the lower respiratory tract are diagnosed by microscopy and culture of secretions from the respiratory tract.
The Copenhagen principles for treatment of bacteria in CF are:
. Positive bacteria cultures are treated with antibiotics whether there are clinical symptoms or not.
. Bacteria such as Staphylococcus aureus, Haemophilus influenzae and intermittently colonized Pseudomonas aeruginosa (PA) infection should be eradicated when present in the lower respiratory tract whether there are clinical symptoms or not. (S. aureus infection is still the most frequently isolated pathogen in CF children but due to efficient antibiotic treatment it is not considered to be a problem among Danish CF patients).
. Chronic PA infection, defined as persistent presence of PA for at least 6 consecutive months, or less when combined with the presence of 2 or more precipitating antibodies against PA, is treated with antibiotics (IV courses) regularly 4 times/year whether there are clinical symptoms or not, plus daily antibiotic inhalations.
. All patients are offered daily Pulmozyme inhalation.
Milestones in Danish CF Treatment
In 1976, a Danish survey showed that a CF patient had 50% chance of surviving 5 years with chronic PA infection. In consequence, the treatment regime against chronic PA infection was changed radically by Dr. Flensborg and elective IV antibiotic courses were introduced, regardless of clinical symptoms when the level of precipitating antibodies against PA reached 2 or higher or the presence of PA for at least 6 consecutive months. As a result of the new treatment regime, the survival among PA chronically infected CF patients increased tremendously over the years. In 1987 daily antibiotic inhalations were added to the treatment.
In the first years with intensive anti-PA IV treatment the risk of cross-infection was high because the wards with inpatients receiving IV treatment were near the outpatient clinic visited by all CF patients who were also not segregated according to presence or absence of PA in their sputum. In 1981, the Copenhagen CF Centre was reconstructed, separating the wards and the outpatient clinic. Segregation (cohort isolation) was introduced, segregating PA patients from non-PA patients in the wards, in the outpatient clinic, and during social events. However, an epidemic spread of a multiresistant PA strain in 1983 led to further segregation of patients infected with PA sensitive strain from patients with multiresistant strain.
After the introduction of cohort isolation in 1981 the incidence and the prevalence of both intermittent PA colonization and of chronic PA infection decreased significantly.
Cross-infection
Today, the Copenhagen CF Centre segregates patients based on identification of the following bacteria from the lower airways:
1) No PA
2) Intermittent PA infection
3) Chronic infection with antibiotic sensitive PA strain
4) Chronic infection with multiply resistant PA strains
5) Intermittent or chronic infection with organisms belonging to the Burkholderia cepacia complex (each patients with B. cepacia complex forms a unique cohort)
6) Achromobacter xylosoxidans infection
The principles of cross infection and segregation are also strictly practised at social events arranged by the Danish CF Association. The overall aim of cohort isolation is not to expose any patient to bacteria which can turn into a chronic infection among CF patients and thereby increase the patients' need for treatment and a possible reduction of the life expectancy. This policy is well accepted and understood by both CF patients and families, even though the segregation policy may restrict patients in their social activity with other CF patients. (Please see article "Prevention of Cross-Infections in CF" by Claus Moser and Niels Høiby in Issue 7, Volume 1-2006).
The Danish CF Association (CFDK)
CFDK was founded in 1967 by a group of parents, grandparents and medical doctors. The first chairman of the association was the founder of the Copenhagen CF Centre Dr. EW Flensborg. Since 2004, Bjarne Hansen, a top executive from the business community is the chairman of the association. The Board of Directors consists of patients, parents and medical doctors. Administration and patient advocacy is carried out by 3 staff members. CFDK's mission and objectives are the well-known issues: to support the patients, to support the research and to disseminate knowledge of CF.
Racing cyclists in CF shirts exhibiting the words "cystic fibrosis" is a helpful tool to disseminate information on CF and to attract media, in particular when one of the cyclists is a PWCF - here the Dane Henrik Gade (CF, 15 yrs), who raced against Richard Virengue in 116 km RITTER Classic Cycle Race 2005.
In 1998, "Code of Conduct" regarding donations was introduced by the Danish CF Association (www.cff.dk - Code of Conduct). Besides fundraising, patient camps, continued patient advocacy, guidance, and family courses and information. The agenda includes:
. Lobbying for continued optimal CF care and social welfare
. Quality control of CF care
. Maintaining positive media coverage
. Fund-raising, participation with local chapters, and recruiting new members to take action
. Identifying and making a continuous assessment of the patient group's problems, needs, wishes
. Supporting the need for biotech research and development
. Addressing ethical issues such as carrier screening
">http://www.cfww.org/pub/edition_8/English/11.asp
</a>
January 1, 2006 there were 434 CF-patients in Denmark. The incidence is 12-15 CF children per year. All are in centralized care at two CF-centres; 287 at the Copenhagen CF Centre at Rigshospitalet (Copenhagen University Hospital) and 147 at the Aarhus CF centre at the Aarhus University Hospital.
The Copenhagen Centre was established as early as 1968 by Dr. E.W. Flensborg. When he retired in 1982, his position at the Copenhagen Centre was taken over by Dr. Christian Koch, who passed away in 2004 and was followed by Dr Tania Pressler. Professor Niels Hoiby is chairman of the Department of Clinical Microbiology at the Copenhagen Centre. The Aarhus Centre was established in 1990, professor P. O. Schiötz being the chairman of the centre.
For over 30 years, the Copenhagen Centre has had a leading international role in CF care. The overall perspective in the care has been that bacterial lung infections are the most important factors responsible for the progression of the lung infections among CF-patients. Consequently, microbiology and infection control have been cornerstones in the "Copenhagen CF treatment" approach.
All patients at the Copenhagen CF Centre are seen for monthly controls which include clinical observation, lung function test, height, weight, microbiological examinations of sputum etc. Bacterial infections of the lower respiratory tract are diagnosed by microscopy and culture of secretions from the respiratory tract.
The Copenhagen principles for treatment of bacteria in CF are:
. Positive bacteria cultures are treated with antibiotics whether there are clinical symptoms or not.
. Bacteria such as Staphylococcus aureus, Haemophilus influenzae and intermittently colonized Pseudomonas aeruginosa (PA) infection should be eradicated when present in the lower respiratory tract whether there are clinical symptoms or not. (S. aureus infection is still the most frequently isolated pathogen in CF children but due to efficient antibiotic treatment it is not considered to be a problem among Danish CF patients).
. Chronic PA infection, defined as persistent presence of PA for at least 6 consecutive months, or less when combined with the presence of 2 or more precipitating antibodies against PA, is treated with antibiotics (IV courses) regularly 4 times/year whether there are clinical symptoms or not, plus daily antibiotic inhalations.
. All patients are offered daily Pulmozyme inhalation.
Milestones in Danish CF Treatment
In 1976, a Danish survey showed that a CF patient had 50% chance of surviving 5 years with chronic PA infection. In consequence, the treatment regime against chronic PA infection was changed radically by Dr. Flensborg and elective IV antibiotic courses were introduced, regardless of clinical symptoms when the level of precipitating antibodies against PA reached 2 or higher or the presence of PA for at least 6 consecutive months. As a result of the new treatment regime, the survival among PA chronically infected CF patients increased tremendously over the years. In 1987 daily antibiotic inhalations were added to the treatment.
In the first years with intensive anti-PA IV treatment the risk of cross-infection was high because the wards with inpatients receiving IV treatment were near the outpatient clinic visited by all CF patients who were also not segregated according to presence or absence of PA in their sputum. In 1981, the Copenhagen CF Centre was reconstructed, separating the wards and the outpatient clinic. Segregation (cohort isolation) was introduced, segregating PA patients from non-PA patients in the wards, in the outpatient clinic, and during social events. However, an epidemic spread of a multiresistant PA strain in 1983 led to further segregation of patients infected with PA sensitive strain from patients with multiresistant strain.
After the introduction of cohort isolation in 1981 the incidence and the prevalence of both intermittent PA colonization and of chronic PA infection decreased significantly.
Cross-infection
Today, the Copenhagen CF Centre segregates patients based on identification of the following bacteria from the lower airways:
1) No PA
2) Intermittent PA infection
3) Chronic infection with antibiotic sensitive PA strain
4) Chronic infection with multiply resistant PA strains
5) Intermittent or chronic infection with organisms belonging to the Burkholderia cepacia complex (each patients with B. cepacia complex forms a unique cohort)
6) Achromobacter xylosoxidans infection
The principles of cross infection and segregation are also strictly practised at social events arranged by the Danish CF Association. The overall aim of cohort isolation is not to expose any patient to bacteria which can turn into a chronic infection among CF patients and thereby increase the patients' need for treatment and a possible reduction of the life expectancy. This policy is well accepted and understood by both CF patients and families, even though the segregation policy may restrict patients in their social activity with other CF patients. (Please see article "Prevention of Cross-Infections in CF" by Claus Moser and Niels Høiby in Issue 7, Volume 1-2006).
The Danish CF Association (CFDK)
CFDK was founded in 1967 by a group of parents, grandparents and medical doctors. The first chairman of the association was the founder of the Copenhagen CF Centre Dr. EW Flensborg. Since 2004, Bjarne Hansen, a top executive from the business community is the chairman of the association. The Board of Directors consists of patients, parents and medical doctors. Administration and patient advocacy is carried out by 3 staff members. CFDK's mission and objectives are the well-known issues: to support the patients, to support the research and to disseminate knowledge of CF.
Racing cyclists in CF shirts exhibiting the words "cystic fibrosis" is a helpful tool to disseminate information on CF and to attract media, in particular when one of the cyclists is a PWCF - here the Dane Henrik Gade (CF, 15 yrs), who raced against Richard Virengue in 116 km RITTER Classic Cycle Race 2005.
In 1998, "Code of Conduct" regarding donations was introduced by the Danish CF Association (www.cff.dk - Code of Conduct). Besides fundraising, patient camps, continued patient advocacy, guidance, and family courses and information. The agenda includes:
. Lobbying for continued optimal CF care and social welfare
. Quality control of CF care
. Maintaining positive media coverage
. Fund-raising, participation with local chapters, and recruiting new members to take action
. Identifying and making a continuous assessment of the patient group's problems, needs, wishes
. Supporting the need for biotech research and development
. Addressing ethical issues such as carrier screening
from <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/pub/edition_8/English/11.asp
">http://www.cfww.org/pub/edition_8/English/11.asp
</a>
January 1, 2006 there were 434 CF-patients in Denmark. The incidence is 12-15 CF children per year. All are in centralized care at two CF-centres; 287 at the Copenhagen CF Centre at Rigshospitalet (Copenhagen University Hospital) and 147 at the Aarhus CF centre at the Aarhus University Hospital.
The Copenhagen Centre was established as early as 1968 by Dr. E.W. Flensborg. When he retired in 1982, his position at the Copenhagen Centre was taken over by Dr. Christian Koch, who passed away in 2004 and was followed by Dr Tania Pressler. Professor Niels Hoiby is chairman of the Department of Clinical Microbiology at the Copenhagen Centre. The Aarhus Centre was established in 1990, professor P. O. Schiötz being the chairman of the centre.
For over 30 years, the Copenhagen Centre has had a leading international role in CF care. The overall perspective in the care has been that bacterial lung infections are the most important factors responsible for the progression of the lung infections among CF-patients. Consequently, microbiology and infection control have been cornerstones in the "Copenhagen CF treatment" approach.
All patients at the Copenhagen CF Centre are seen for monthly controls which include clinical observation, lung function test, height, weight, microbiological examinations of sputum etc. Bacterial infections of the lower respiratory tract are diagnosed by microscopy and culture of secretions from the respiratory tract.
The Copenhagen principles for treatment of bacteria in CF are:
. Positive bacteria cultures are treated with antibiotics whether there are clinical symptoms or not.
. Bacteria such as Staphylococcus aureus, Haemophilus influenzae and intermittently colonized Pseudomonas aeruginosa (PA) infection should be eradicated when present in the lower respiratory tract whether there are clinical symptoms or not. (S. aureus infection is still the most frequently isolated pathogen in CF children but due to efficient antibiotic treatment it is not considered to be a problem among Danish CF patients).
. Chronic PA infection, defined as persistent presence of PA for at least 6 consecutive months, or less when combined with the presence of 2 or more precipitating antibodies against PA, is treated with antibiotics (IV courses) regularly 4 times/year whether there are clinical symptoms or not, plus daily antibiotic inhalations.
. All patients are offered daily Pulmozyme inhalation.
Milestones in Danish CF Treatment
In 1976, a Danish survey showed that a CF patient had 50% chance of surviving 5 years with chronic PA infection. In consequence, the treatment regime against chronic PA infection was changed radically by Dr. Flensborg and elective IV antibiotic courses were introduced, regardless of clinical symptoms when the level of precipitating antibodies against PA reached 2 or higher or the presence of PA for at least 6 consecutive months. As a result of the new treatment regime, the survival among PA chronically infected CF patients increased tremendously over the years. In 1987 daily antibiotic inhalations were added to the treatment.
In the first years with intensive anti-PA IV treatment the risk of cross-infection was high because the wards with inpatients receiving IV treatment were near the outpatient clinic visited by all CF patients who were also not segregated according to presence or absence of PA in their sputum. In 1981, the Copenhagen CF Centre was reconstructed, separating the wards and the outpatient clinic. Segregation (cohort isolation) was introduced, segregating PA patients from non-PA patients in the wards, in the outpatient clinic, and during social events. However, an epidemic spread of a multiresistant PA strain in 1983 led to further segregation of patients infected with PA sensitive strain from patients with multiresistant strain.
After the introduction of cohort isolation in 1981 the incidence and the prevalence of both intermittent PA colonization and of chronic PA infection decreased significantly.
Cross-infection
Today, the Copenhagen CF Centre segregates patients based on identification of the following bacteria from the lower airways:
1) No PA
2) Intermittent PA infection
3) Chronic infection with antibiotic sensitive PA strain
4) Chronic infection with multiply resistant PA strains
5) Intermittent or chronic infection with organisms belonging to the Burkholderia cepacia complex (each patients with B. cepacia complex forms a unique cohort)
6) Achromobacter xylosoxidans infection
The principles of cross infection and segregation are also strictly practised at social events arranged by the Danish CF Association. The overall aim of cohort isolation is not to expose any patient to bacteria which can turn into a chronic infection among CF patients and thereby increase the patients' need for treatment and a possible reduction of the life expectancy. This policy is well accepted and understood by both CF patients and families, even though the segregation policy may restrict patients in their social activity with other CF patients. (Please see article "Prevention of Cross-Infections in CF" by Claus Moser and Niels Høiby in Issue 7, Volume 1-2006).
The Danish CF Association (CFDK)
CFDK was founded in 1967 by a group of parents, grandparents and medical doctors. The first chairman of the association was the founder of the Copenhagen CF Centre Dr. EW Flensborg. Since 2004, Bjarne Hansen, a top executive from the business community is the chairman of the association. The Board of Directors consists of patients, parents and medical doctors. Administration and patient advocacy is carried out by 3 staff members. CFDK's mission and objectives are the well-known issues: to support the patients, to support the research and to disseminate knowledge of CF.
Racing cyclists in CF shirts exhibiting the words "cystic fibrosis" is a helpful tool to disseminate information on CF and to attract media, in particular when one of the cyclists is a PWCF - here the Dane Henrik Gade (CF, 15 yrs), who raced against Richard Virengue in 116 km RITTER Classic Cycle Race 2005.
In 1998, "Code of Conduct" regarding donations was introduced by the Danish CF Association (www.cff.dk - Code of Conduct). Besides fundraising, patient camps, continued patient advocacy, guidance, and family courses and information. The agenda includes:
. Lobbying for continued optimal CF care and social welfare
. Quality control of CF care
. Maintaining positive media coverage
. Fund-raising, participation with local chapters, and recruiting new members to take action
. Identifying and making a continuous assessment of the patient group's problems, needs, wishes
. Supporting the need for biotech research and development
. Addressing ethical issues such as carrier screening
">http://www.cfww.org/pub/edition_8/English/11.asp
</a>
January 1, 2006 there were 434 CF-patients in Denmark. The incidence is 12-15 CF children per year. All are in centralized care at two CF-centres; 287 at the Copenhagen CF Centre at Rigshospitalet (Copenhagen University Hospital) and 147 at the Aarhus CF centre at the Aarhus University Hospital.
The Copenhagen Centre was established as early as 1968 by Dr. E.W. Flensborg. When he retired in 1982, his position at the Copenhagen Centre was taken over by Dr. Christian Koch, who passed away in 2004 and was followed by Dr Tania Pressler. Professor Niels Hoiby is chairman of the Department of Clinical Microbiology at the Copenhagen Centre. The Aarhus Centre was established in 1990, professor P. O. Schiötz being the chairman of the centre.
For over 30 years, the Copenhagen Centre has had a leading international role in CF care. The overall perspective in the care has been that bacterial lung infections are the most important factors responsible for the progression of the lung infections among CF-patients. Consequently, microbiology and infection control have been cornerstones in the "Copenhagen CF treatment" approach.
All patients at the Copenhagen CF Centre are seen for monthly controls which include clinical observation, lung function test, height, weight, microbiological examinations of sputum etc. Bacterial infections of the lower respiratory tract are diagnosed by microscopy and culture of secretions from the respiratory tract.
The Copenhagen principles for treatment of bacteria in CF are:
. Positive bacteria cultures are treated with antibiotics whether there are clinical symptoms or not.
. Bacteria such as Staphylococcus aureus, Haemophilus influenzae and intermittently colonized Pseudomonas aeruginosa (PA) infection should be eradicated when present in the lower respiratory tract whether there are clinical symptoms or not. (S. aureus infection is still the most frequently isolated pathogen in CF children but due to efficient antibiotic treatment it is not considered to be a problem among Danish CF patients).
. Chronic PA infection, defined as persistent presence of PA for at least 6 consecutive months, or less when combined with the presence of 2 or more precipitating antibodies against PA, is treated with antibiotics (IV courses) regularly 4 times/year whether there are clinical symptoms or not, plus daily antibiotic inhalations.
. All patients are offered daily Pulmozyme inhalation.
Milestones in Danish CF Treatment
In 1976, a Danish survey showed that a CF patient had 50% chance of surviving 5 years with chronic PA infection. In consequence, the treatment regime against chronic PA infection was changed radically by Dr. Flensborg and elective IV antibiotic courses were introduced, regardless of clinical symptoms when the level of precipitating antibodies against PA reached 2 or higher or the presence of PA for at least 6 consecutive months. As a result of the new treatment regime, the survival among PA chronically infected CF patients increased tremendously over the years. In 1987 daily antibiotic inhalations were added to the treatment.
In the first years with intensive anti-PA IV treatment the risk of cross-infection was high because the wards with inpatients receiving IV treatment were near the outpatient clinic visited by all CF patients who were also not segregated according to presence or absence of PA in their sputum. In 1981, the Copenhagen CF Centre was reconstructed, separating the wards and the outpatient clinic. Segregation (cohort isolation) was introduced, segregating PA patients from non-PA patients in the wards, in the outpatient clinic, and during social events. However, an epidemic spread of a multiresistant PA strain in 1983 led to further segregation of patients infected with PA sensitive strain from patients with multiresistant strain.
After the introduction of cohort isolation in 1981 the incidence and the prevalence of both intermittent PA colonization and of chronic PA infection decreased significantly.
Cross-infection
Today, the Copenhagen CF Centre segregates patients based on identification of the following bacteria from the lower airways:
1) No PA
2) Intermittent PA infection
3) Chronic infection with antibiotic sensitive PA strain
4) Chronic infection with multiply resistant PA strains
5) Intermittent or chronic infection with organisms belonging to the Burkholderia cepacia complex (each patients with B. cepacia complex forms a unique cohort)
6) Achromobacter xylosoxidans infection
The principles of cross infection and segregation are also strictly practised at social events arranged by the Danish CF Association. The overall aim of cohort isolation is not to expose any patient to bacteria which can turn into a chronic infection among CF patients and thereby increase the patients' need for treatment and a possible reduction of the life expectancy. This policy is well accepted and understood by both CF patients and families, even though the segregation policy may restrict patients in their social activity with other CF patients. (Please see article "Prevention of Cross-Infections in CF" by Claus Moser and Niels Høiby in Issue 7, Volume 1-2006).
The Danish CF Association (CFDK)
CFDK was founded in 1967 by a group of parents, grandparents and medical doctors. The first chairman of the association was the founder of the Copenhagen CF Centre Dr. EW Flensborg. Since 2004, Bjarne Hansen, a top executive from the business community is the chairman of the association. The Board of Directors consists of patients, parents and medical doctors. Administration and patient advocacy is carried out by 3 staff members. CFDK's mission and objectives are the well-known issues: to support the patients, to support the research and to disseminate knowledge of CF.
Racing cyclists in CF shirts exhibiting the words "cystic fibrosis" is a helpful tool to disseminate information on CF and to attract media, in particular when one of the cyclists is a PWCF - here the Dane Henrik Gade (CF, 15 yrs), who raced against Richard Virengue in 116 km RITTER Classic Cycle Race 2005.
In 1998, "Code of Conduct" regarding donations was introduced by the Danish CF Association (www.cff.dk - Code of Conduct). Besides fundraising, patient camps, continued patient advocacy, guidance, and family courses and information. The agenda includes:
. Lobbying for continued optimal CF care and social welfare
. Quality control of CF care
. Maintaining positive media coverage
. Fund-raising, participation with local chapters, and recruiting new members to take action
. Identifying and making a continuous assessment of the patient group's problems, needs, wishes
. Supporting the need for biotech research and development
. Addressing ethical issues such as carrier screening
To anticipate the question I know I'll get about resistance:
Yes, their resistance rates are higher.
But the vast majority of CF patients don't die because they ran out of antibiotic options. They die because they lose lung function due to chronic infections. Treating with antibiotics so often treats the main cause of death of CF patients.
Yes, their resistance rates are higher.
But the vast majority of CF patients don't die because they ran out of antibiotic options. They die because they lose lung function due to chronic infections. Treating with antibiotics so often treats the main cause of death of CF patients.
To anticipate the question I know I'll get about resistance:
Yes, their resistance rates are higher.
But the vast majority of CF patients don't die because they ran out of antibiotic options. They die because they lose lung function due to chronic infections. Treating with antibiotics so often treats the main cause of death of CF patients.
Yes, their resistance rates are higher.
But the vast majority of CF patients don't die because they ran out of antibiotic options. They die because they lose lung function due to chronic infections. Treating with antibiotics so often treats the main cause of death of CF patients.
To anticipate the question I know I'll get about resistance:
Yes, their resistance rates are higher.
But the vast majority of CF patients don't die because they ran out of antibiotic options. They die because they lose lung function due to chronic infections. Treating with antibiotics so often treats the main cause of death of CF patients.
Yes, their resistance rates are higher.
But the vast majority of CF patients don't die because they ran out of antibiotic options. They die because they lose lung function due to chronic infections. Treating with antibiotics so often treats the main cause of death of CF patients.