WS11.6 Unmet needs in end of life care for the adult cystic fibrosis patient: A review of expectations, challenges, and current practice

Objectives: People with CF are increasingly surviving into adulthood, yet there is little research on the employment consequences of having CF. We investigated, for the first time in a UK-wide cohort, longitudinal employment status, and its association with deprivation, disease severity, and time in hospital. Methods: Longitudinal registry study of adults with CF in the UK aged 20 to 40 (3458 people with 15,572 observations between 1996 and 2010). Mixed effects models were used to assess the association between small area deprivation and employment status, adjusting for clinically important covariates. Results: Around 50% of adults were in employment. People in the most deprived quintile were less likely to be in full time employment (log-odds −2.66 95%CI −3.1 to −2.26, compared to the least). Poor lung function is approximately twice as harmful to employment chances in people living in the most deprived areas, compared to the least. Men with higher %FEV1 and BMI were more likely to be in employment, whereas time in hospital was associated with decreased employment chances. Genotype and use of home IV therapy were not associated with employment status. Conclusion: Deprivation is a more important predictor of employment chances than disease severity and time in hospital. Furthermore, deprivation amplifies the harmful effects of disease severity on employment: the employment chances of people with poor lung function from disadvantaged areas are damaged to a greater extent than for their counterparts living in the least disadvantaged circumstances. We acknowledge the support of the MRC and the UK Cystic Fibrosis Trust. WS11.6 Unmet needs in end of life care for the adult cystic fibrosis patient: A review of expectations, challenges, and current practice B.J. Quinn1, L.-C. Wann1, P. Maniscalco1, R.I. Cohen1. 1North Shore-LIJ School of Medicine at Hofstra University, New Hyde Park, United States