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It is not dangerous for patients with cystic fibrosis to interact at patient schools, says new research from Aarhus University Hospital and Aarhus University. This research challenges international guidelines recommending strict separation of CF patients due to risk of bacterial transmission.

It is well documented that contact with others in the same situation increases the quality of life of children and adolescents with cystic fibrosis (CF). It is important for children with CF to exchange experiences about their disease with each other, and to realise that they are not alone fighting the disease and the time-consuming treatments.

Patient associations worldwide have striven to offer holidays, skiing trips and summer schools for children and adolescents with CF. Due to fear of cross-infections, most of these arrangements have now been terminated. The consequence is that patients with CF are separated from each other – also when admitted to the hospital.

CF schools at Aarhus University Hospital

The CF Centre at Aarhus University Hospital has a long tradition for arranging so-called ”CF schools”/educational programmes for children and adolescents. Recent concerns about the safety of social arrangements for patients with CF have been discussed and considered. Only a few treatment centres in the world have similar offers, and parents and health care staff have worried about possible risks. On the other hand, the positive experiences for children and adolescents with CF are undeniable.

On this basis the researchers decided to investigate patients with CF participating in CF schools at Aarhus University Hospital. The results showed that there was no increased risk of  transmission of bacteria for patients attending CF schools.

The results are significant and important for children and adolescents with CF and their parents when considering participation in a CF school programme.

The CF Centre at Aarhus University Hospital will continue to offer CF school programmes to children and adolescents with CF.

Facts

About the study

- The Department of Clinical Microbiology at Aarhus University Hospital has compared bacteria from children and adolescents cultured one year before and one year after participation in CF school programmes. The study only covers contacts where precautions have been taken concerning risk of transmission of bacteria.

- In the period from 2009 to 2011 there were seven CF school programmes at Aarhus University Hospital. The three most common bacteria in children and adolescents with CF are Pseudomonas aeruginosa, Staphylococcus aureus and Haemophilus influenzae. A total of 984 bacteria sampled from 46 patients have been investigated.

- All of the 24 patients with P. aeruginosa infection had unique strains that were not detected in others. Analysis of S. aureus from 43 patients and H. influenzae from 32 patients showed three possible cases of infection with S. aureus and three possible cases of infection with H. influenzae between patients who had participated in the same CF school programme. Patients who had not participated in the same school programme  or who had never participated in any CF school programmes also frequently had the same bacteria strain. Statistical assessment showed that participation in a CF school programme was not associated with an increased risk of sharing the same strain of S. aureus or H. influenzae.

About cystic fibrosis

- Approximately 450 Danes live with CF.

- The disease is hereditary and primarily affects the lungs. Today the average life expectancy for Danish patients with CF is around 40 years.

- Recurrent bacterial infections weaken the lungs, which are finally destroyed.

- Patients with CF are susceptible to lung infections with unusual bacteria and can infect each other.

About the CF school at Aarhus University Hospital

-  CF school programmes at Aarhus University Hospital are divided into age groups and participants meet 1-6 times over three to ten months. At the school, participants are told about body functions, medicine, supplementary food and prevention of infections. The programmes also include physical activities such as gymnastics and swimming and joint cooking activities. In groups participants exchange experiences, thoughts and dreams about the future. All CF school programmes are monitored by health care staff and always include instructions in proper hand hygiene and cough etiquette.

About the article 

The results of the study are published as a scientific article in the July issue of

 Journal of Cystic Fibrosis with the title: "Lack of evidence of increased risk of bacterial transmission during cystic fibrosis educational programmes", see link

http://www.ncbi.nlm.nih.gov/pubmed/26003901

Further information:

Hanne Olesen, MD, Consultant, Department of Paediatrics, Head of CF Centre, Aarhus University Hospital, email: hannoles@rm.dk; Tel.: +45 7845 1533