Socioeconomic inequalities in pregnancy outcome associated with Down syndrome: a population-based study.

OBJECTIVE: To investigate socioeconomic inequalities in outcome of pregnancy associated with Down syndrome (DS) compared with other congenital anomalies screened for during pregnancy. DESIGN AND SETTING: Retrospective population-based registry study (East Midlands & South Yorkshire in England). PARTICIPANTS: All registered cases of DS and nine selected congenital anomalies with poor prognostic outcome (the UK Fetal Anomaly Screening Programme (FASP)9) with an end of pregnancy date between 1 January 1998 and 31 December 2007. MAIN OUTCOME MEASURES: Poisson regression models were used to explore outcome measures, including socioeconomic variation in rates of anomaly; antenatal detection; pregnancy outcome; live birth incidence and neonatal mortality. Deprivation was measured using the Index of Multiple Deprivation 2004 at super output area level. RESULTS: There were 1151 cases of DS and 1572 cases of the nine severe anomalies combined. The overall rate of antenatal detection was 57% for DS, which decreased with increasing deprivation (rate ratio comparing the most deprived tenth with the least deprived: 0.76 (0.60 to 0.97)). Antenatal detection rates were considerably higher for FASP9 anomalies (86%), with no evidence of a trend with deprivation (0.99 95% CI (0.84 to 1.17)). The termination of pregnancy rate following antenatal diagnosis was higher for DS (86%) than the FASP9 anomalies (70%). Both groups showed wide socioeconomic variation in the termination of pregnancy rate (rate ratio: DS: 0.76 (0.58 to 0.99); FASP9 anomalies: 0.80 (0.65 to 0.97)). Consequently, socioeconomic inequalities in live birth and neonatal mortality rates associated with these anomalies arise that were not observed in utero. CONCLUSIONS: Socioeconomic inequalities exist in the antenatal detection of DS, and subsequent termination rates are much higher for DS than other anomalies. Termination rates for all anomalies are lower in more deprived areas leading to wide socioeconomic inequalities in live born infants with a congenital anomaly, particularly DS, and subsequent neonatal mortality

Supermarket/Hypermarket Opportunistic Screening for Atrial Fibrillation (SHOPS-AF) using sensors embedded in the handles of supermarket trolleys: A feasibility study

BackgroundAtrial fibrillation (AF) increases the risk of death, stroke, heart failure, cognitive decline, and healthcare costs but is often asymptomatic and undiagnosed. There is currently no national screening programme for AF. The advent of validated hand-held devices allows AF to be detected in non-healthcare settings, enabling screening to be undertaken within the community. Method and ResultsIn this novel observational study, we embedded a MyDiagnostick single lead ECG sensor into the handles of shopping trolleys in four supermarkets in the Northwest of England: 2155 participants were recruited. Of these, 231 participants either activated the sensor or had an irregular pulse, suggesting AF. Some participants agreed to use the sensor but refused to provide their contact details, or consent to pulse assessment. In addition, some data were missing, resulting in 203 participants being included in the final analyses. Fifty-nine participants (mean age 73.6 years, 43% female) were confirmed or suspected of having AF; 20 were known to have AF and 39 were previously undiagnosed. There was no evidence of AF in 115 participants and the remaining 46 recordings were non-diagnostic, mainly due to artefact. Men and older participants were significantly more likely to have newly diagnosed AF. Due to the number of non-diagnostic ECGs (n=46), we completed three levels of analyses, excluding all non-diagnostic ECGs, assuming all non-diagnostic ECGs were masking AF, and assuming all non-diagnostic ECGs were not AF. Based on the results of the three analyses, the sensor's sensitivity (95% CI) ranged from 0.70 - 0.93; specificity from 0.15 - 0.97; positive predictive values (PPV) and negative predictive values (NPV) ranged from 0.24 - 0.56 and 0.55-1.00, respectively. These values should be interpreted with caution, as the ideal reference standard on 1934 participants was imperfect. ConclusionThe study demonstrates that the public will engage with AF screening undertaken as part of their daily routines using hand-held devices. Sensors can play a key role in identifying asymptomatic patients in this way, but the technology must be further developed to reduce the quantity of non-diagnostic ECGs

“Being Guided”: What Oncofertility Patients’ Decisions Can Teach Us About the Efficacy of Autonomy, Agency, and Decision-Making Theory in the Contemporary Critical Encounter

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an informed, autonomous decision to be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters

Student perspectives on service user and carer involvement in professional programmes: reflections on a collaborative project

Service user and carer participation at all levels of the student journey in professional programmes, including admissions, curriculum development, teaching, assessment and research, can introduce students to a range of diverse voices and perspectives. It can develop an awareness of the lived experience of those they will be working with by helping students to engage with, and be part of a wider community whilst, enriching their learning and preparing them for professional practice (Newman et al, 2021). A service user and carer perspective built into student’s learning can help to shape and enhance the student learning community, support the development of the learning curriculum and support students feel more connected to their courses. This can also help create and develop a student professional identity in different ways for students as future qualified professionals. Much in the same way as service user involvement in design of services is essential to ensuring services are fit for purpose, engagement and inclusion of students in the development and delivery of their curriculum is crucial to support their leaning and help them to feel connected and to their programmes. This collaborative project within the Faculty of Health, provides the opportunity to create a cross school learning community, with students coming together across professional disciplines to engage with their peers to find out the student perspective on service user and carer involvement in their programmes of study. This student led presentation will provide a reflection on the engagement and participatory strategies taken by the project students to access other student voices, and will highlight the findings to date

Facilitators and barriers of physical activity participation in children with a single ventricle physiology: a mixed-methods study.

BackgroundThe present study focuses on assessing the physical activity level of children with Fontan circulation for Hypoplastic Left Heart Syndrome and identifying potential barriers and facilitators toward their participation in physical activity.Patients and methodsSeven children aged 5-16 years (mean (SD) 8.8 (3.7) years) with a Fontan procedure for hypoplastic left heart syndrome, their parents (n = 7), and siblings (n = 1) were recruited. Data were collected using a mixed-methods approach: (i) children wore an activity monitor for 7 days to record physical activity, with sedentary time and level of activity calculated from accelerometer data; (ii) children completed a bespoke questionnaire recording limitations in physical activity; (iii) parents completed a semi-structured interview discussing perceptions about their child's physical activity participation. Qualitative data were analysed using thematic analysis.ResultsActivity monitors data recorded highly active children with a mean (SD) of 153(36) minutes/day spent in moderate-to-vigorous physical activity. Time spent in sedentary behaviour was also high (57.5% of total accelerometer wearing-time). Four key themes relating to parental perceptions of physical activity were identified: (i) A new lease of life -post-Fontan; (ii) Setting limits - managing limitations; (iii) The wider world - how others set limits; and (iv) "I fear the future" - parental concerns.ConclusionFollowing completion of the Fontan circulation, children engaged in higher levels of physical activity in comparison to the national average. However, more than half their time was spent in sedentary behaviour. Fears and anxiety from parents and teachers may act as a barrier toward physical activity participation

Caring For Patients With Congenital Heart Disease – A Nationwide Survey Of Nurses’ Educational Needs

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Congenital Heart Disease

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Clinicians’ perspectives of parental decision-making following diagnosis of a severe congenital anomaly: a qualitative study

Objective: To explore clinicians’ perspectives on supporting parents’ decision-making following diagnosis of a severe congenital anomaly, and how this is shaped by current policy. Methods: This paper reports data collated as part of a larger project examining parents’ decision-making following antenatal diagnosis. The focus of this paper is the data arising from semi-structured interviews conducted with 18 clinicians, with findings further supported by data generated from consultations between clinicians and parents. All interviews and consultations were audio-recorded and transcribed verbatim, with analysis based on the constant comparative approach. Results: Three key themes emerged which together shape the practice of clinicians working in this area. First, the law governing termination of pregnancy (TOP) and how clinicians believe this influences the context in which decisions about whether to terminate or continue an affected pregnancy are made. Second, approaches to the management of cases seen as particularly challenging. Third, how clinicians understand their role when working with parents. These themes combine to create a strong desire on the part of clinicians for parents to engage in a particular ‘rational’ form of decision-making and to be able to demonstrate the enactment of this. This is seen as important in order to ensure the ‘right’ decision has been reached and, particularly when the decision is to terminate, will withstand possible scrutiny. Conclusions: The policy context in which these decisions are made strongly shapes how clinicians practise and what they want to see from the parents with whom they work. The ways in which they seek to overcome the difficulties in interpreting the law may result in variations in the offer of late TOP, both between and within units. This may inadvertently affect the options available to women least able to engage in this idealised form of decision-making