HLSs (n = 557) invited to participate in a survey on late effects in 1994 were divided into three groups: participants without CF (n = 329), participants with CF (n = 113), non-participants (n = 98). Controls matched for gender and age were drawn from the general population (five per HLSs, n = 2785). Observation time was calculated from 1st January 1994 until date of death or cut-off at 1st January 2007. Kaplan–Meier plots were used for univariate analyses and Cox models for multiple covariates.
Compared to controls HLSs had nearly five times higher mortality (HR = 4.93; 95 % confidence interval [CI]: 3.91–6.21) and the mortality rate of HLSs was higher than the rate of their controls for the entire observation period. Mortality was increased in all groups: participants with CF: HR = 4.85 (95 % CI: 3.02–7.77), participants without CF: HR = 4.35 (95 % CI: 3.16–6.00), non-participants: HR = 9.45 (95 % CI: 5.44–16.41).
Compared to the controls HLSs had over six times increased mortality of cancer (HR: 6.6, 95 % CI: 4.7–9.2) and almost five times increased mortality of cardiovascular diseases (HR: 4.9, 95 % CI: 3.1–7.9).
HLSs had almost five-time increased mortality compared to controls. CF was not associated with increased mortality rate. The high mortality among the non-participating HLSs indicates that serious health problems are underestimated in this group. This has implications for the interpretation of surveys in cancer survivors.