Psychological reactions to predictive genetic testing for Huntington's disease: A qualitative study.

There is a lack of qualitative research investigating the experience of individuals at risk for Huntington's disease (HD) during the period prior to undergoing predictive testing, as well as their reaction to the test result. This secondary analysis study aimed to explore the experiences during the predictive testing process of individuals who had been or who were at risk for HD. For the primary study, in-depth semi-structured interviews were conducted, and data were analyzed using inductive thematic analysis. We employed the explorative qualitative design for this study, which involved 33 individuals who had been or who were at risk for HD. Results indicate that many had been anticipating the onset of the disease even before they knew their mutation status. Their choice of whether to get tested or not was influenced by personal, social, and practical factors. Whether the test result was positive or negative, coping with the test result was reported to be difficult. Participants with a mutation-negative result felt a need for more follow-up consultations than what they had received. Findings indicate that the decision to undergo predictive testing for HD was not only a personal choice, but was also influenced by both proximal and distant factors. Similar to individuals who tested positive for the mutation, individuals who tested negative for the mutation may need comprehensive follow-up to adapt to the reality of the test result.

[High-risk pregnancy, costs and DRG reimbursement]. / Risikofødende, kostnader og DRG-refusjon.

BACKGROUND: The aim of this study was to measure actual costs of delivery of women with high-risk pregnancies in Norway. We calculated the cost difference between Caesarean section delivery and vaginal delivery and compared costs and the reimbursement received by hospitals. The present Norwegian financial system for hospitals has two components: a government reimbursement based on diagnosis-related groups (DRG) covering, in principle, half of hospital costs, and a basic budget received as a block grant. MATERIAL AND METHOD: The study included 75 high-risk pregnant women. We used a prospective, individual bottom-up method based on: 1) hospital stay and the resources required, 2) operating theatre costs, 3) other major procedures, and 4) material and medication costs. Overhead costs (basic and general costs) were added on the basis on five key variables: 1) number of admittances (length of stay), 2) number of discharges, 3) number of employees, 4) floor space, and 5) number of PCs. The total cost for each patient was compared with the reimbursement received. RESULTS: We found that the reimbursement did not cover actual costs. Calculations were made for Caesarean and vaginal deliveries respectively: Mean cost of a Caesarean delivery was NOK 96,556, compared to a DRG reimbursement of NOK 47,137; mean cost of a vaginal delivery was NOK 62,136, with a DRG reimbursement of NOK 27,146.