Background MDT care in dedicated centres has been a contributor to improved Cystic Fibrosis (CF) survival and in UK and USA outcomes for patients in centres, and is collected by national CF registries. Routine national death data using ICD-10 codes will identify all CF deaths giving an indication of how many deaths occur in patients not receiving centre care. It might be suspected that the UK health service with universal access might have a different mix of patients in the CF registry than the US insurance based health system despite the US CF foundation's attempts to reduce barriers to care. This study compared registry and routine deaths in UK and USA.
Methods UK and US routine deaths for ICD-10 E84 are provided in 5 year age bands and the age of death was taken as the midpoint age in the band. Medians were calculated with STATA.
Results US routine data are not yet published for 2007 onwards. The Abstract P236 table 1 shows total deaths and median age at death derived from routine and registry data for USA and UK.
Discussion Both the US and UK have around 20% of CF deaths occurring outside centres though in 2009 in the UK this fell to 4%. In 3 out of the 5 years that allow comparison the median age at death was higher in UK registry data compared to the USA. Contrary to expectation the median age at death derived from routine data are higher than the age of death from registry data in all years where comparison is possible. Interestingly, in the US routine data the distribution were different to the UK with many more very old (over 70) patients. The increased age at death in routine data may in part reflect the imprecision related to the routine data only providing age at death in 5 year bands. The apparent higher proportion of very elderly in the US is intriguing and invites further study.