ECFS best practice guidelines: the 2018 revision

Developments in managing CF continue to drive dramatic improvements in survival. As newborn screening rolls-out across Europe, CF centres are increasingly caring for cohorts of patients who have minimal lung disease on diagnosis. With the introduction of mutation-specific therapies and the prospect of truly personalised medicine, patients have the potential to enjoy good quality of life in adulthood with ever-increasing life expectancy. The landmark Standards of Care published in 2005 set out what high quality CF care is and how it can be delivered throughout Europe. This underwent a fundamental re-write in 2014, resulting in three documents; center framework, quality management and best practice guidelines. This document is a revision of the latter, updating standards for best practice in key aspects of CF care, in the context of a fast-moving and dynamic field. In continuing to give a broad overview of the standards expected for newborn screening, diagnosis, preventative treatment of lung disease, nutrition, complications, transplant/end of life care and psychological support, this consensus on best practice is expected to prove useful to clinical teams both in countries where CF care is developing and those with established CF centres. The document is an ECFS product and endorsed by the CF Network in ERN LUNG and CF Europe

Psychosocial aspects of chronic disease cystic fibrosis - coping

The Diploma Thesis is dealing with the role of coping strategies in a chronic disease with a special interest in a cystic fibrosis (CF) disorder. In the Introduction section the biology nature of the CF, its psychology impact, as well as, techniques of coping in the respect to chronic disease, mainly to CF, are presented. Moreover, the possibility of a psychology intervention is discussed. Experimental section is devoted to the research performed with the group of 104 individuals of which 63 were parents of CF patients and 41 were adult CF patients. In order to examine coping strategies used in the selected CF groups Cystic Fibrosis Coping Scale Questionary was applied. Obtained data were statistically interpreted using a SPSS software. Results of paired Student's t-test show partial significant differences in coping strategies between groups of adults CF patients and parents of CF patients, groups of men and women, and in group of parents of CF patients classified according to their age. However, in the group of parents no statistically significant differences in relation to the age of their sick children were found