Still diagnosed late as 30 per cent of children with cystic fibrosis.

– there has been an increase of 13% of people older than fourteen years suffering from cystic fibrosis, in the last 10 years. CF patients average survival is growing

– currently in school-age children have to spend more than one hour of a day in application of treatments

-increasing the visibility of the CF has favored the social integration

-A communication perceived as positive for the patient with your health care provider promotes adherence to treatment and reduces the anxiety and uncertainty

-the average age of patients needing a transplant is 22-year-old

– the study has been conducted with the participation of 556 people, between the months of January to may of 2011

Spain, March 2012.- the present year SEPAR 2012 of the respiratory minority diseases intends to make participants especially to all the associations of patients. In this sense, it presents results from research on the situation psychosocial of people with cystic fibrosis in Spain by the Spanish Federation of Cystic Fibrosis, Member of the Executive Committee of the year 2012 SEPAR.

In 1999, the first study carried out by the Federation. Past 11 years has carried out new research in order to compare, analyze and determine the achievements that have been made in the evolution of the disease throughout this period. Cystic Fibrosis (CF) is a chronic and hereditary disease that affects areas of the body that produce secretions causing infections and inflammations that destroy, mainly areas of the lung, liver, pancreas, and reproductive system.

One of the findings of the previous investigation was that CF has ceased to be a pediatric disease. With the temporal perspective of these ten years, we can say that there has been an increase of 13 per cent of persons over 14 years of suffering from the illness. The average CF patient survival is growing. Increasingly diagnosed more new cases of cystic fibrosis in adults who were previously not recognized as such, and older than 15 years are served mostly in units of adults. Another significant outcome is the decline by 6% in the number of babies with CF.

However, 30% of children are diagnosed even belatedly between 2 and 14 years old, what should now not happen. This fact obliged to work to increase the information between pediatricians and to facilitate access by children, with compatible symptoms, CF units; in such a way that with the generalization of the implantation of neonatal screening in Spain, early diagnosis and proper and early care children soon you can decrease the percentage of late detection.

This strategy of dissemination of the CF, begins to show conclusive results, that the majority of people with this disease are diagnosed before the year, which means that compared with 10 years ago, parents do not have to seek a diagnosis as symptoms continue moving, with the consequent decline in nutritional and respiratory, besides the emotional distress caused by the uncertainty.

The study assesses the social situation of patients at different stages of his life. A child with cystic fibrosis in the process of socialization in the school stage, meets a number of factors that can lead to a latent complex. School-age children have to spend more than one hour of treatments per day. This procedure involves a higher fatigue, both externally and professional levels, the children who do not suffer this disease.

Other side, the recommendations of health personnel and the fruit of the efforts of the agents involved in raising awareness of the importance of children with CF living as children of the same age, has led to an increase in children from 0 to 6 years attending non-compulsory child educationmade a turn has generated further increase in people with this disease that they are enrolled in College, very important thing for the future labour integration, the State of health and the improvement of quality of life. With these data, the study reiterates that there is a positive increase in people with cystic fibrosis in adulthood, with regard to data of previous years.

Within the school noteworthy work by the standardization and dissemination of the disease. In 1999, 56.7% of teachers were informed by the parents about the ailment, in 2011 has been an increase of 14.5% of teachers informed about students who suffer from cystic fibrosis. Just as happens in the students, ten years ago only 15.2% of classmates knew about the disease; Nowadays it is 36% about those who have knowledge of the same.

Advances in this field are reflected in various occasions. More comfortable treatments, less need for entering the hospital and a more normal footing of the disease are causes that have managed to improve the quality of life for them. For example, in 1999, 40 per cent of patients missing more than 3 weeks to class; While in 2011 only 23.3% more than 3 weeks.

In the field of the employment situation, the study highlights that 21.1% of patients are working, 77.9% which does not currently work. Comparing these data with figures drawn in the 1999 study, the percentage of people with CF working it was half that now. Despite these increases, there is a 27.1% over the age of 15 interviewees that neither study nor work, establishing a clear relationship between the degree of impairment and the activities of people with CF. More than 62 per cent of those who neither study nor work, feels that his degree of illness is serious. In aspects work should be noted that there is difference in the certificate of disability concessions both then and now, still and being a progressive, degenerative and multisystem disease.

Existing treatments are one of the areas developed in the study. There is a significant increase of 7.6 per cent in the realization of physical therapy, and given that the percentage of prescription is similar (89.5%) the best option for the future would be to supplement them as its proximity is quite acceptable. In the same way, there is a significant increase in the number of transplants carried out in the past 10 years. The average age of transplanted patients are age 22. The more transplanted organ remains the lungs, at the same time, that have already begun also cardiopulmonary transplantation.

Loosely, there is progress and a few very significant progress in this area; communication and spread of the disease to be one of the key basis for their knowledge, research and treatment.

Throughout the study shows that in the last 10 years has increased the visibility of CF in different areas of the daily lives of people with CF. This has led to school adaptation, the labour integration, sharing of family responsibilities, adherence to treatment, relationships.

The vast majority of patients appreciate communication with doctors as very positive. This increases the compliance with medical recommendations; seeking help in the workforce when arise them questions or concerns and that diminishes the sense of uncertainty and threat characteristic in different stages of the disease.

Research shows that associations have a key role in emotional support to families with members affected by the disease. They are perceived as the main support in processes such as the transplant with 53% in front of the extensive family and economic aid of autonomous communities.