Understanding the Impact of Different Modes of Information Provision on Preferences for a Newborn Bloodspot Screening Program in the United Kingdom
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PROVIDER: S-EPMC10913504 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
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Project description:Background: Understanding preferences for information provision in the context of health care service provision is challenging because of the number of potential attributes that may influence preferences. This study aimed to identify midwives' preferences for the process and outcomes of information provision in an expanded national newborn bloodspot screening program. Design: A sample of practicing midwives completed a hybrid-stated preference survey including a conjoint analysis (CA) and discrete choice experiment to quantify preferences for the types of, and way in which, information should be provided in a newborn bloodspot screening program. Six conjoint analysis questions captured the impact of different types of information on parents' ability to make a decision, and 10 discrete choice experiment questions identified preferences for four process attributes (including parents' ability to make a decision). Results: Midwives employed by the UK National Health Service (n = 134) completed the survey. All types of information content were perceived to improve parents' ability to make a decision except for the possibility of false-positive results. Late pregnancy was seen to be the best time to provide information, followed by day 3 postbirth. Information before 20 weeks of pregnancy was viewed as reducing parents' ability to make a decision. Midwives preferred information to be provided by an individual discussion and did not think parents should receive information on the Internet. Conclusion: A hybrid stated preference survey design identified that a wide variety of information should be provided to maximize parents' ability to make a decision ideally provided late in pregnancy or on day 3 postbirth.
| S-EPMC6125045 | biostudies-literature
Project description:BackgroundThe extent to which economic evaluations have included the healthcare resource and outcome-related implications of information provision in national newborn bloodspot screening programmes (NBSPs) is not currently known.ObjectivesTo identify if, and how, information provision has been incorporated into published economic evaluations of NBSPs.MethodsA systematic review of economic evaluations of NBSPs (up to November 2014) was conducted. Three electronic databases were searched (Ovid: Medline, Embase, CINAHL) using an electronic search strategy combining a published economic search filter with terms related to national NBSPs and screening-related technologies. These electronic searches were supplemented by searching the NHS Economic Evaluations Database (NHS EED) and hand-searching identified study reference lists. The results were tabulated and summarised as part of a narrative synthesis.ResultsA total of 27 economic evaluations [screening-related technologies (n = 11) and NBSPs (n = 16)] were identified. The majority of economic evaluations did not quantify the impact of information provision in terms of healthcare costs or outcomes. Five studies did include an estimate of the time cost associated with information provision. Four studies included a value to reflect the disutility associated with parental anxiety caused by false-positive results, which was used as a proxy for the impact of imperfect information.ConclusionA limited evidence base currently quantifies the impact of information provision on the healthcare costs and impact on the users of NBSPs; the parents of newborns. We suggest that economic evaluations of expanded NBSPs need to take account of information provision otherwise the impact on healthcare costs and the outcomes for newborns and their parents may be underestimated.
| S-EPMC4751163 | biostudies-literature
Project description:This study, conducted under the oversight of National Health Service Blood & Transplant, aimed to evaluate the current feasibility and implementation of both comprehensive and focused donor echocardiography in United Kingdom Intensive Care Units through a nationwide survey. Responses from 95 hospitals across all 4 UK nations showed each ICU had median 4 (IQR 2, 6) personal with 3 (IQR 2, 5) consultants and 1 (IQR 0, 2) registrar trained in focused echocardiography. A comprehensive echocardiogram can be acquired in 48% (n = 46) of hospitals within 6 h during regular working hours. This percentage drops to 11% (n = 10) outside of regular working hours, with 53% (n = 50) indicating this would require more than 24 h. In the case of focused echocardiogram acquisition, 60% (n = 57) of hospitals can obtain it within 6 h during normal working hours. This figure decreases to 20% (n = 19) outside of regular working hours, with 32% (n = 30) indicating that this would require more than 24 h to obtain. Overall, 98% of responding units (n = 93) have point-of-care ultrasound machines (median 2 (IQR 2, 3) machines per ICU) all equipped with echocardiographic capabilities. However, only 52% (n = 49) of respondents indicated have the ability for remote viewing of echocardiogram images.
| S-EPMC11549723 | biostudies-literature
Project description:ObjectiveThere are no specific data available regarding paediatric endoscopy provision in the UK and anecdotal experiences suggest that such provision varies widely between the units. The aim of our study was to identify the current provision of paediatric endoscopy services in the UK, the number of endoscopies performed in each unit, the number of operators performing these endoscopies and whether endoscopies were performed under sedation or general anaesthesia.Methods and resultsAn email questionnaire was sent to all 31 units in the UK performing paediatric endoscopies and responses were received from 25 centres (81%). The median number of total endoscopies (upper and lower) per unit each year was 332 (range 64-2040). The median number of gastrosopy per consultant in each centre was 101 (range 20-288) and median number of colonoscopies performed per consultant per year was 49 (range 10-215). 18 of the 25 centres performed all endoscopies under general anaesthesia with 7 centres using sedation as well as general anaesthesia. Percutaneous endoscopic gastrostomy insertion (PEG) was performed in 24 out of 25 centres with the service undertaken by paediatric surgeons in 11 centres. 11 centres provided formal out of hours endoscopy services.ConclusionThere is wide variation in paediatric endoscopy provision and the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) endoscopy working group is collaborating with the Joint Advisory Group (JAG) to provide specific standards for paediatric endoscopy services in the UK.
| S-EPMC5369830 | biostudies-literature
Project description:Newborn bloodspot screening (NBS) aims to detect treatable disorders in newborns to offer early interventions. According to the official Dutch national NBS guidance, parents in the Netherlands should be informed about NBS during pregnancy by maternity care providers (MCPs), providing two leaflets and oral information. This study investigated what, how, and when information about NBS is given during pregnancy according to Dutch MCPs. An online questionnaire was completed by 279 MCPs; 237 (84.9%) provided information to parents themselves, although 4.6% of them only did so postnatally, and 240 (86.0%) considered this the task of the MCP. Among the 237 MCPs, information was provided by personal conversation (59.9%) and by giving at least one leaflet (83.1%), while 25.7% only gave leaflets. Being a first pregnancy (45.1%) and parents' literacy (38.8%) influenced how MCPs provided information. Information was mostly provided at 34-37 weeks gestation (68.8%). Conversations mostly included giving information on when NBS will be performed (97.2%), the purpose of NBS (93.7%), how the test will be performed (92.3%), and participation being voluntary (80.3%). The results suggest that while most Dutch MCPs consider it their task to provide NBS information, its timing, method, and completeness do not always follow the established guidelines.
| S-EPMC11755565 | biostudies-literature
Project description:Over the last four decades, the UK has made large investments in healthcare information technology. The authors conducted interviews and reviewed published and unpublished documents to describe national-scale clinical information exchange in England, how it was achieved, and the problems experienced that the USA might avoid. Clinical information exchange in the UK was accomplished by establishing a foundation of policy, infrastructure, and systems of care, by creating and acquiring clinical computing applications and with strong use of financial and clinical incentives. Many software and hardware vendors played a part in this effort; they participated in a national framework created by the NHS in which standards for exchange are specified and their applications designed to make clinical information exchange part of normal practice. Great potential exists for cost reduction, increased safety, and greater patient involvement as a result of clinical information exchange.
| S-EPMC3005869 | biostudies-other
Project description: Not available
| S-EPMC8211351 | biostudies-literature
Project description:IntroductionThe goal of newborn bloodspot screening (NBS) is the early detection of treatable disorders in newborns to offer early intervention. Worldwide, the number of conditions screened for is expanding, which might affect public acceptance. In the Netherlands, participation is high (>99%), but little is known about how parents perceive NBS. This study assessed parents' views on accepting, declining and expanding NBS.MethodsA total of 804 of 6051 (13%) invited parents who participated in NBS in the Netherlands during the last two weeks of December 2019, and 48 of 1162 (4%) invited parents who declined participation in NBS in 2019 and 2020, completed a questionnaire.ResultsThe most important reason for parents to participate in NBS was to prevent health complaints, whereas the most important reason to decline NBS was parents' viewpoint on life and the belief that the heel prick would be painful for the child. Compared to NBS participants, respondents who declined NBS were more actively religious, considered alternative medicine or lifestyle more important, were less inclined to vaccinate their child for infectious diseases, and reported more doubt about NBS participation (all differences p < .001). Informed choice was lower among respondents who declined NBS (44%) compared to participants in NBS (83%, p < .001), mostly due to insufficient knowledge. Of the NBS participants, 95% were positive about NBS expansion. Most NBS participants agreed to include conditions that could unintentionally reveal a diagnosis in the mother instead of the child (86%) or a condition that may not cause symptoms until later in the child's life (84%).ConclusionMost participants made an informed decision to participate in NBS and are positive about screening for more conditions. Insights into parents' views on (non-)participation and expansion of NBS can help to ensure that NBS suits the population needs while safeguarding ethical principles for screening.
| S-EPMC9387838 | biostudies-literature
Project description:ObjectivesSupervised exercise programmes (SEPs) are a vital treatment for people with intermittent claudication, leading improvements in walking distance and quality of life and are recommended in multiple national and international guidelines. We aimed to evaluate the use and structure of SEPs in the United Kingdom (UK).DesignWe conducted an anonymous online survey using the Jisc platform comprising of 40 questions. The survey was designed to address key areas such as access, provision, uptake and delivery of SEPs in the United Kingdom. Ethical approval was obtained from Coventry University (P108729).MethodsThe list of trusts providing vascular services was obtained from the National Vascular Registry (NVR) report. The survey was disseminated via social media, The Vascular Society of Great Britain and Ireland and the Society for Vascular Technology. Data were exported to a Microsoft Excel document and analysed using simple descriptive statistics.ResultsOf 93 vascular units identified, we received response from 48. Of these, 23 had access to an exercise programme (48%). The majority of SEPs were exclusively for PAD patients (77%), with 21% using integrated services. 67% of respondents were providing a circuit-based programme, and 5 out of 23 were meeting the dose recommendations in the UK National Institute for Health and Care Excellence (NICE) guidelines. Respondents felt that programmes were moderately to extremely important to patients, slightly to very important to clinicians and not at all important to slightly important to commissioning/funding bodies.ConclusionSEPs are a well-established first-line treatment for patients with IC and they are recommended by NICE guidelines. Despite this, many patients still do not have access to an exercise programme, and clinicians do not feel that they have support from commissioning/funding bodies to develop them. There is an urgent need for funding, development and delivery of SEPs in the United Kingdom.
| S-EPMC9485155 | biostudies-literature
Project description:IntroductionAlcohol beverages in many countries are required to display health information and warnings on all product packaging, given the individual and societal harm caused by alcohol. It is unclear whether consumers purchasing alcohol online are able to easily view such information. This study examines the presence, type and location of mandatory and voluntary health information and warnings consumers are exposed to when entering online alcohol retail shopping environments in the United Kingdom (UK) and New Zealand (NZ).MethodsUsing an observational study design, 1407 randomly sampled alcoholic beverages from 14 online alcohol retailers (7 per country) were reviewed to ascertain the visual presence or absence of mandatory and voluntary health information and warnings.ResultsUK online alcohol retailers were more compliant than NZ retailers in showing mandatory health information (e.g., alcohol by volume percentage was visible on 92% of alcoholic beverages sold online in the UK, compared to 31% in NZ, p < 0.001). A similar pattern was noted for voluntary health warnings. Online retailers in both countries had a low proportion of alcohol products with the viewable mandatory information, and voluntary health warnings were rarely present and/or viewable.Discussion and conclusionsMandatory health information and warnings for alcoholic beverages are not fully adhered to within the UK and NZ online retail environments, impacting the ability of consumers to make informed purchase decisions. In both countries, alcohol policy needs to stipulate that mandatory health information and warnings should be clearly viewable on the product page and product imagery of online alcohol retailers.
| S-EPMC10099350 | biostudies-literature