Cost of care of patients with cystic fibrosis in The Netherlands in 1990-1.

Abstract

Background -Research on the cost of care of patients with cystic fibrosis is scarce. The aim of this study was to estimate the costs using age-specific medical consumption from real patient data. Methods -The age-specific medical consumption ofpatients with cystic fibrosis in The Netherlands in 1991 was estimated from a survey of medical records and a patient questionnaire. A distinction was made between costs of hospital care, hospital and non-hospital medication, and home care. Costs per year were obtained by multiplying the yearly amount of care and the costs per unit. Results -On average the annual cost of a patient with cystic fibrosis in 1991 was £10 908 (hospital care 42%, medication 37%, home care 20%). The cost of care of cystic fibrosis in The Netherlands, with approximately 1000 patients, is estimated at £10-9 million per year, which is 0 07% of the total health care budget. The cost of care of a patient up to the age of 35 is estimated at £614 587. When year-to-year survival is taken into account and future costs are discounted to the year of birth with a yearly discount rate of 5%, the cost of care of a patient with cystic fibrosis is estimated at £164365 for 1991. This estimate will be used in a prospective evaluation of screening for cystic fibrosis carriers. Conclusions -The cost of care of patients with cystic fibrosis estimated by age-specific medical consumption of real patients is higher than that estimated by non-agespecific medical consumption and/or expert opinions.

Socio-economic burden of rare diseases: A systematic review of cost of illness evidence

“…Lifetime treatment costs are estimated to be lower in older studies, as prevention of progression (physiotherapy, high fat diet plus enzymes) and medications (IV therapy) were not yet universally applied. Over twenty years ago Wildhagen et al calculated Dutch lifetime costs per patient adjusting for survival and using a 5% discount rate to €287,591 (GBP 164,365 in 1991) (38), while later estimates in Germany based on extrapolation of childhood costs suggested €477,280 (€396,000 in 1997) (15) A c c e p t e d M a n u s c r i p t 13 between these estimates are primarily due to inclusion of only outpatient costs in Germany, while the American study incorporated direct costs including medication and inpatient care (though unclear whether outpatient costs were included).…”

The nonhospital costs of care of patients with CF in The Netherlands: results of a questionnaire

“…The results of this analysis have been used in the calculation of the total costs of the disease cystic fibrosis [10]. For this reason, the medical consumption per age category was determined and the nonhospital costs added.…”

Cost of Cystic Fibrosis: Analysis of Treatment Costs in a Specialized Center in Northern Italy

“…Several studies designed to assess the costs of illness in patients with CF were carried out more than two decades ago [13][14][15][16][17][18][19][20][21]. These studies were reviewed by Krauth et al [1] who highlighted the wide range of mean annual cost per patient (US $6,200-16,300, 1996 rate), mainly due to differences in the clinical conditions of the patients considered, healthcare systems involved, and in the completeness of healthcare services and resource consumed.…”

“…Most of these studies had major limitations, including the fact that only five were based on individual patient care data [14,16,[18][19][20], whereas three were only aggregated expert cost estimations.…”