TY - JOUR T1 - Preventable deaths and better outcomes in CF: Need for organising care at European standards in developing countries JF - European Respiratory Journal JO - Eur Respir J VL - 38 IS - Suppl 55 SP - p4296 AU - Laura-Larisa Dracea AU - Liviu Pop Y1 - 2011/09/01 UR - http://erj.ersjournals.com/content/38/Suppl_55/p4296.abstract N2 - Advances in research and treatment changed the outlook for CF patients in developed countries.Aim: Evaluation of actual standards of CF care and identification of opportunities for changing the outcome of romanian CF patients.Methods: Analysis of clinical outcomes of CF patients (0-17 years) followed up in a Regional Center over 12 years (1998-2011) correlated with standards of care and level of funding.Results: 45 children with CF followed up over the study period, 90% diagnosed before the age of 1 year (10/45 with meconium ileus, all underwent surgery and had complications). Mean age at diagnosis was 1.3 years, 36/45 were genotyped with 66% prevalence of del F508. 15 deaths were encountered, 67% before 2004 when the Ministry of Health provided funding. 66% of deaths before the age of 3 years, were influenced by poor socio-economic status, undernutrition and reduced level of understanding the nature of the disease. 65% of patients developed premature severe lung disease related to poor nutrition and early aquisition of P aeruginosa. CF related conditions as ABPA, CFRLD, diabetes in 6/45 patients represented risk factors for poorer outcomes. In 55% of patients malnutrition was correlated with poverty.The level of funding represented only 50% of the needs and the lack of a staffed CF unit was a major barrier to proper care of patients.Conclusions: Clinical outcomes were adversely impacted by lack of funding and complexity of factors that caracterise transition to European standards in a developing country. Development of programes aimed to increase knowledge and motivation for being involved in CF care are needed in order to offer better outlooks for CF patients. ER -