The Life With Cystic Fibrosis: Socioeconomic Impact of the Disease on Patients and Their Caregivers in the Czech Republic

OBJECTIVES:

Cystic fibrosis (CF) is a rare genetic disease with a chronic, progressive, and multisystemic nature that negatively affects patients and caregivers. Our study explored its socioeconomic burden.

METHODS:

A cross-sectional questionnaire-based study was performed among the Czech CF patient organization members. We collected demographic, clinical, and healthcare resource use data, out-of-pocket and social transfer costs, and responses to validated specific questionnaires: CFQ-R, WPAI (Work productivity and activity impairment), EQ-5D, and the Zarit burden interview (ZBI; range min-max:0-88) (caregiver burden). Productivity loss/costs were assessed using a human capital approach with patient assumed life expectancy of 45 years (accounting for premature death/lost productivity), caregiver retirement age equal to 64 years, and discounted by 3%.

RESULTS:

257 patients completed the questionnaires (37% of the Czech CF population). The mean age was 17 years; most were females (59%), and the mean FEV1 was 81.4%(SD:25.4%). 107 patients had caregiver(s) with a mean age of 39 years. The study revealed a significant time burden for caregivers (an extra 4.6 hours/day). ZBI scores were equal to 25.4, comparable with advanced cancer, dementia, or Duchenne muscular dystrophy.

Total out-of-pocket family costs related to CF were €278/month, mainly related to medicines(€105), foods(€73), and transport(€59). A significant proportion of patients received a disability pension (25%) or other social security benefits (18%). The proportion of unemployed caregivers was 10-times higher than the general population (31% vs. 3.2%). The work impairment of employed patients and caregivers was 25% and 15%, respectively, with the majority being presenteeism. Total lifetime discounted productivity costs extrapolated to the whole Czech cohort (n=687) and their caregivers were €155,181,286 (€225,883/patient).

CONCLUSIONS:

Our study revealed a significant societal burden imposed on CF patients and their caregivers. We, therefore, believe that these high societal costs should not be omitted while assessing innovative, effective CF treatments.