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Societal costs and quality of life associated with arginase 1 deficiency in a European setting - a multinational, cross-sectional survey.
J Med Econ
September 2024
Immedica Pharma AB, Stockholm, Sweden.
Background And Aims: Arginase 1 deficiency (ARG1-D) is a ultrarare disease with manifestations that cause mobility and cognitive impairment that progress over time and may lead to early mortality. Diseases such as ARG1-D have a major impact also outside of the health care sector and the aim of this study was to estimate the current burden of disease associated with ARG1-D from a societal perspective.
Methods: The study was performed as a web-based survey of patients with ARG1-D and their caregivers in four European countries (France, Portugal, Spain, United Kingdom).
Severe refractory hypotension during induction of general anesthesia in patient after 48 hours of azilsartan discontinuation: A case report.
Medicine (Baltimore)
November 2023
Department of Anesthesiology and Pain Medicine, Presbyterian Medical Center, Jeonju, Jeollabuk-Do, Korea.
Article Synopsis
- Angiotensin II receptor blockers (ARBs) can cause severe hypotension during general anesthesia, even when discontinued 48 hours prior to surgery, leading to surgical delays.
- A 66-year-old patient experienced refractory hypotension during anesthesia for cranioplasty despite stopping azilsartan, requiring multiple interventions that ultimately postponed the surgery.
- For successful management, the patient's ARB was discontinued 96 hours before a second surgery, allowing for safe anesthesia and a successful operation without hypotension.
Factors affecting patient and public perceptions of the adoption of electronic health record sharing: A Hong Kong study.
Int J Med Inform
October 2023
Room 6346 6/F, Li Dak Sum Yip Yio Chin Building, School of Law, City University of Hong Kong, Tat Chee Avenue, Kowloon HKSAR, Hong Kong. Electronic address:
Background And Objectives: The disclosure of personal health information in electronic health records (eHR) highlights privacy and security concerns that are complicated by the digitization and interoperability of health records. Hong Kong's Electronic Health Record Sharing System (eHRSS), introduced in March 2016, enables eHR sharing among public and private health services upon the consent of patients. Based on a September 2021 survey, this study examined the specific context of Hong Kong, patient and public perceptions on the security and privacy of eHR sharing, correlation of trust with personal privacy and security concerns, and how perceptions affect health care-related decisions.
View Article and Find Full Text PDFWithdrawing biologics in non-systemic JIA: what matters to pediatric rheumatologists?
Pediatr Rheumatol Online J
July 2023
Department of Health Technology & Services Research, Faculty of Behavioural, Management and Social Sciences, Technical Medical Centre, University of Twente, P.O. Box 217, Enschede, AE, The Netherlands.
Objective: Approximately one third of children with JIA receive biologic therapy, but evidence on biologic therapy withdrawal is lacking. This study aims to increase our understanding of whether and when pediatric rheumatologists postpone a decision to withdraw biologic therapy in children with clinically inactive non-systemic JIA.
Methods: A survey containing questions about background characteristics, treatment patterns, minimum treatment time with biologic therapy, and 16 different patient vignettes, was distributed among 83 pediatric rheumatologists in Canada and the Netherlands.
Ethics of Treatment Decisions for Extremely Premature Newborns with Poor Prognoses: Comparison of Shared Decision Making in Norway and Japan.
Pediatr Rep
November 2022
Department of Biomedical Ethics, Faculty of Medicine, University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-0033, Japan.
Ethical debates about the life-prolonging treatment of extremely premature infants and infants with congenital abnormalities with poor prognoses have long been held. We will examine approaches in Norway and Japan as examples because Norway is a well-known welfare state. By comparing the traditional Norwegian approach, the newly proposed approach of postponed withholding (PPWH) and the Japanese approach, we will revisit shared decision making in neonatology in general, where patients (i.
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