Formulation of the Comfort Women Discourse in International Society

Cystic fibrosis (CF) causes a relatively high medical consumption. A large part of the treatment takes place at home. Because data regarding nonhospital care are lacking, we wished to determine the costs of care of patients with CF outside the hospital. A questionnaire was sent to 73 patients with CF from two Dutch hospitals (response rate 64%, 14 children and 33 adults). Average consumption and average costs per patient per year were calculated for children and adults for six categories: non-hospital medical care; domestic help; diet; travelling because of CF; medication; and devices and special facilities at home, work or school. The average non-hospital costs of care amounted to £4,641 per child per year (range £712-13,269) and £10,242 per adult (range £1,653-26,571). Nonhospital medical care for children and adults accounted for, respectively, 8 and 5% of these costs, domestic help for 15 and 9%, diet for 10 and 7%, travelling because of CF for 4 and 8%, medication for 63 and 67%, and devices and special facilities at home, work or school for 1 and 4%. Nonhospital costs of care of cystic fibrosis are very high and amount to 50% of the total (medical and nonmedical) lifetime costs of cystic fibrosis

Pregnancy as Foreground in Cystic Fibrosis Carrier Testing Decisions in Primary Care

Cystic fibrosis carrier testing (CFCT) is among the first of the DNA tests offered prenatally in primary care settings. This paper from a descriptive qualitative study describes the influence of pregnancy in CFCT decisions by women receiving community-based prenatal care. Twenty-seven women receiving prenatal care in Midwestern U.S. primary care clinics completed semistructured interviews. Audiotaped interviews were analyzed using content analysis. Participants described decision-making influences and strategies from the perspective of “being pregnant.” Patterns of attitudes and beliefs include (1) dealing with emotions, (2) pregnancy is natural, and (3) thinking about the baby. Strategies in the decision-making process included (1) reducing stress, (2) choosing what is relevant, (3) doing everything right, (4) wanting to be prepared, (5) delaying information, and (6) trusting God. While other factors were mentioned by some women, major themes reflect the influence of currently being pregnant on the decision-making process. These findings suggest that pregnancy is a powerful influence on the decision-making process and may not be the optimal time to make fully informed decisions regarding genetic carrier testing. Further understanding of factors influencing the genetic testing decision-making process is needed. Offering CFCT prior to conception is advocated

Comparison of single-entry and double-entry two-step couple screening for cystic fibrosis carriers

Both single-entry two-step (SETS) couple screening and double-entry two-step (DETS) couple screening have been recommended as methods to screen for cystic fibrosis gene carriers. In this paper we compare the expected results from both types of screening. In general, DETS results in a higher detection rate of couples in which both partners are carriers, but also in a higher proportion of couples with only one identified carrier who have a significant remaining risk in their offspring

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

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 of patients 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 pound 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 pound 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 pound 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 pound 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-age-specific medical consumption and/or expert opinions