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BACKGROUND: In 2017, Ireland pioneered a unique response to the worsening epidemiology of carbapenemase-producing Enterobacterales (CPE), declaring a national public health emergency. Subsequently, CPE mitigation guidelines and policies were implemented in acute hospitals, focused on patient screening and outbreak management, often by healthcare workers (HCWs) with limited background in infection prevention and control (IPC). CPE risks from sinks and drains remain inadequately controlled. AIMS: To compare CPE awareness, perceptions of the role of the environment in CPE transmission, and disposal practices of liquid waste from clinical handwashing sinks between IPC HCWs and non-IPC HCWs in Ireland. METHODS: Between December 2022 and March 2023, HCWs employed in acute hospitals in Ireland between 2017 and 2022 were invited to participate anonymously in a 30-question digital survey. FINDINGS: Responses (N=283) were received across several clinical disciplines. In total, 21.6% of respondents were working or had previously worked in IPC roles, 84.1% of whom reported no IPC-related learning needs. In comparison with non-IPC HCWs, more IPC HCWs perceived a risk of pathogen transmission from clean water plumbing (68.9% vs 39.2%; P<0.001) and waste/drainage plumbing (81.2% vs 43.7%; P<0.001). Among nursing and medical staff, only 5.6% of IPC HCWs used clinical handwashing sinks for disposal of liquid waste, compared with 60% of non-IPC HCWs (P<0.001). In comparison with non-IPC HCWs, a greater proportion of IPC HCWs reported that they had witnessed colleagues routinely discarding liquid waste (including nutritional products, antimicrobials and patient body fluids) via clinical handwashing sinks (88.9% vs 77.9%) CONCLUSIONS: Although there is general awareness of the role of the built environment in pathogen transmission, including CPE, familiarity with sink/water-related transmission is greater among IPC HCWs. There may be opportunities to improve disposal practices for liquid waste through education targeting non-IPC HCWs.
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Proteínas Bacterianas , Infección Hospitalaria , beta-Lactamasas , Humanos , Infección Hospitalaria/prevención & control , Estudios Transversales , Personal de Salud , Control de Infecciones , Políticas , AguaRESUMEN
Placenta accreta spectrum (PAS) refers to abnormal trophoblast invasion into the myometrium. The global prevalence of PAS is rising as the number of caesarean deliveries increases. PAS is associated with higher rates of maternal morbidity and mortality. Although mainstream management has been caesarean hysterectomy, uterine conservative techniques are also used, such as the extirpative technique, leaving the placenta in situ, the triple-P procedure, embolisation, uterine balloon tamponade and methotrexate medication. This case report describes an innovative yet simple and safe technique, namely partial myometrial resection of the focal adherent placenta. Unlike hysterectomy, this technique can preserve fertility. It was performed on an undiagnosed focal placental accreta during a caesarean section with a routine caesarean section theatre set-up and did not require obstetric follow-up after the patient was discharged. This procedure can be considered an option for managing focal placenta accreta.
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OBJECTIVES: Acute heart failure (AHF) hospitalisation is associated with 10% mortality. Outpatient based management (OPM) of AHF appeared effective in observational studies. We conducted a pilot randomised controlled trial (RCT) comparing OPM with standard inpatient care (IPM). METHODS: We randomised patients with AHF, considered to need IV diuretic treatment for ≥2 days, to IPM or OPM. We recorded all-cause mortality, and the number of days alive and out-of-hospital (DAOH). Quality of life, mental well-being and Hope scores were assessed. Mean NHS cost savings and 95% central range (CR) were calculated from bootstrap analysis. Follow-up: 60 days. RESULTS: Eleven patients were randomised to IPM and 13 to OPM. There was no statistically significant difference in all-cause mortality during the index episode (1/11 vs 0/13) and up to 60 days follow-up (2/11 vs 2/13) [p = .86]. The OPM group accrued more DAOH {47 [36,51] vs 59 [41,60], p = .13}. Two patients randomised to IPM (vs 6 OPM) were readmitted [p = .31]. Hope scores increased more with OPM within 30 days but dropped to lower levels than IPM by 60 days. More out-patients had increased total well-being scores by 60 days (p = .04). OPM was associated with mean cost savings of £2658 (95% CR 460-4857) per patient. CONCLUSIONS: Patients with acute HF randomised to OPM accrued more days alive out of hospital (albeit not statistically significantly in this small pilot study). OPM is favoured by patients and carers and is associated with improved mental well-being and cost savings.
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Insuficiencia Cardíaca , Pacientes Ambulatorios , Humanos , Proyectos Piloto , Ahorro de Costo , Insuficiencia Cardíaca/terapia , HospitalizaciónRESUMEN
We present the case of a child given a CFSPID designation in early life who was later reclassified as having CF based on a combination of recurrent respiratory symptoms and CFTR functional testing, despite normal sweat chloride levels. Here we demonstrate the importance of monitoring these children, each time reviewing the diagnosis based on updated understanding of individual CFTR mutation phenotypes or clinical findings inconsistent with the designation. This case identifies situations in which the CFSPID designation should be challenged, and gives an approach for this when CF is suspected.
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Fibrosis Quística , Recién Nacido , Niño , Humanos , Fibrosis Quística/diagnóstico , Fibrosis Quística/genética , Regulador de Conductancia de Transmembrana de Fibrosis Quística/genética , Tamizaje Neonatal , Fenotipo , MutaciónRESUMEN
BACKGROUND: Studies have shown that nutritional products are discarded via handwash sinks by healthcare workers, and this practice may promote bacterial growth, including growth of pathogens such as carbapenemase-producing Enterobacterales (CPE). Outbreaks and acquisition of CPE in nosocomial settings are associated with negative outcomes for patients and hospitals. OBJECTIVES: To investigate the potential growth-promoting effect of nutritional support drinks (NSDs) and enteral tube-feed products (ETFPs) on CPE. METHODS: Six different CPE strains were grown in five different diluted NSDs, five different diluted ETFPs, Mueller-Hinton broth (MHB) and M9 minimal salts media to simulate discarding a small volume of nutritional product in a u-bend, already containing liquid. CPE were enumerated at 0 h, 6 h and 24 h, and compared using two-way analysis of variance and Dunett test, with confidence levels at 95%. Spearman's r was used to measure the strength of correlation between component concentrations in nutritional products and CPE growth. RESULTS: All NSDs and ETFPs promoted CPE growth that exceeded both M9 (negative growth control) and MHB (positive growth control). In several cases, growth in NSDs/ETFPs was significantly greater compared with growth in MHB. CONCLUSION: Nutritional products support CPE growth under in-vitro conditions. The propensity of CPE to survive in drain pipework suggests that inappropriate product disposal may further nourish established CPE in these environmental reservoirs. The growth observed in diluted NSDs and ETFPs shows that modifiable practices should be optimized to mitigate the potential risk of CPE transmission from these reservoirs.
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Infecciones por Enterobacteriaceae , Gammaproteobacteria , Humanos , Nutrición Enteral , beta-Lactamasas/análisis , Proteínas Bacterianas/análisis , Hospitales , Infecciones por Enterobacteriaceae/microbiologíaRESUMEN
PURPOSE: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. METHODS: Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology. RESULTS: Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all p ≤ 0.05 after the program and maintained at 3-month follow-up). The ENVISAGE-Families program was relevant to parents' needs for: information, connection, support, wellbeing, and preparing for the future. Participants experienced opportunities to reflect on and/or validate their perspectives of disability and development, and how these perspectives related to themselves, their children and family, and their service providers. CONCLUSIONS: ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.Implications for rehabilitationENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher "early intervention and orientation" program for caregivers raising a child with neurodevelopmental disabilities (NDDs).ENVISAGE-Families empowered parents' strengths-based approaches to their child, family, disability, and parenting.ENVISAGE-Families increased caregivers' confidence in parenting children with NDD's and provided them tools to support connection, collaboration, and wellbeing.Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.
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Cuidadores , Padres , Femenino , Niño , Humanos , Madres , Responsabilidad Parental , Intervención Educativa PrecozRESUMEN
INTRODUCTION: Recent evidence suggests that acute emergency management of mandible fractures does not improve surgical outcomes yet is associated with increased financial burden. Current NHS policy advocating for increased adoption of day-case and semi-elective surgical procedures to reduce bed strain must be balanced with providing timely, effective treatment. Our research aims to determine patient groups currently managed via semi-elective admission and whether this can be extended to other groups to provide safe and effective management of mandible fractures. METHODS: A multi-national trainee-led audit of mandibular fractures across 49 units was completed by the Maxillofacial Trainee Research Collaborative (MTReC). Each unit prospectively collected data on fractures on admission and at follow-up. Data collected included patient demographics, behaviour, health, injury, timing to intervention and surgical complications. RESULTS: Data were collected on 947 mandibular fractures. Of the surgically managed patients, 649 (90%) were managed via acute emergency admission at the time of presentation, while 68 (10%) were managed semi-electively. Patient demographics, injury pattern and mechanism appeared to significantly affect timing of management, whereas patient behaviour, health status, timing of injury and presentation did not. Semi-elective management was associated with a significantly shorter inpatient duration (0.9 versus 1.9 days, p=0.000) with no differences in readmission, antibiotic usage or surgical complications (p=1.000, RR 1.030). CONCLUSION: Our study demonstrates the efficacy of planned admissions and semi-elective management of mandibular fractures. Simple mandibular fractures in compliant patients are suitable for semi-elective treatment. Holistic patient assessment and tailored surgical planning is crucial in determining admission modality to effectively manage mandibular trauma.
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Fracturas Mandibulares , Humanos , Fracturas Mandibulares/cirugía , Fijación Interna de Fracturas/métodos , Antibacterianos , Resultado del Tratamiento , Mandíbula , Estudios RetrospectivosRESUMEN
INTRODUCTION: Chronic inflammation can remain many years after the completion of cancer treatment and is associated with cancer recurrence. The purpose of this study was to examine how a 16-week therapeutic yoga program (TYP) modulates the cytokine profile in heterogeneous cancer survivors. METHODS: Eligible participants were 18 years of age or older and clinically diagnosed with cancer. Consenting participants were asked to attend three, 75-min sessions weekly of TYP with meditation. Seventeen patients provided blood samples at baseline and end of study. Eight cytokines (interferon (IFN)-γ; interleukin (IL)-1b, IL-1ra, IL-4, IL-6, IL-8, IL-10; and tumor necrosis factor (TNF)-α), three receptors (sIL-6R, sTNFRI, sTNFRII), and C-reactive protein (CRP) were quantified. RESULTS: Patients were 59.6 ± 7.3 years old; over half (56%) were overweight or obese BMI ≥ 25 kg/m2); majority were female (71%) and breast cancer survivors (65%), of which 44% were Hispanic. Marked reductions were observed in all cytokines except IL-4, with significant reductions (p < 0.05) found in IL-1b (- 13%) and IL-1ra (- 13%). No significant changes were observed in soluble cytokine receptors or CRP. CONCLUSIONS: TYP led to significant reduction in circulating cytokines associated with chronic inflammation in a heterogeneous sample of cancer survivors.
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Supervivientes de Cáncer , Meditación , Yoga , Humanos , Femenino , Masculino , Adolescente , Adulto , Persona de Mediana Edad , Anciano , Citocinas , Proteína Antagonista del Receptor de Interleucina 1 , Interleucina-4 , Recurrencia Local de Neoplasia , Factor de Necrosis Tumoral alfa , Proteína C-Reactiva/metabolismo , InflamaciónRESUMEN
Gaucher disease (GD) is an autosomal recessive lysosomal storage disorder due to the deficient activity of the acid beta-glucosidase (GCase) enzyme, resulting in the progressive lysosomal accumulation of glucosylceramide (GlcCer) and its deacylated derivate, glucosylsphingosine (GlcSph). GCase is encoded by the GBA1 gene, located on chromosome 1q21 16 kb upstream from a highly homologous pseudogene. To date, more than 400 GBA1 pathogenic variants have been reported, many of them derived from recombination events between the gene and the pseudogene. In the last years, the increased access to new technologies has led to an exponential growth in the number of diagnostic laboratories offering GD testing. However, both biochemical and genetic diagnosis of GD are challenging and to date no specific evidence-based guidelines for the laboratory diagnosis of GD have been published. The objective of the guidelines presented here is to provide evidence-based recommendations for the technical implementation and interpretation of biochemical and genetic testing for the diagnosis of GD to ensure a timely and accurate diagnosis for patients with GD worldwide. The guidelines have been developed by members of the Diagnostic Working group of the International Working Group of Gaucher Disease (IWGGD), a non-profit network established to promote clinical and basic research into GD for the ultimate purpose of improving the lives of patients with this disease. One of the goals of the IWGGD is to support equitable access to diagnosis of GD and to standardize procedures to ensure an accurate diagnosis. Therefore, a guideline development group consisting of biochemists and geneticists working in the field of GD diagnosis was established and a list of topics to be discussed was selected. In these guidelines, twenty recommendations are provided based on information gathered through a systematic review of the literature and two different diagnostic algorithms are presented, considering the geographical differences in the access to diagnostic services. Besides, several gaps in the current diagnostic workflow were identified and actions to fulfill them were taken within the IWGGD. We believe that the implementation of recommendations provided in these guidelines will promote an equitable, timely and accurate diagnosis for patients with GD worldwide.
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Enfermedad de Gaucher , Humanos , Técnicas de Laboratorio Clínico , Enfermedad de Gaucher/diagnóstico , Enfermedad de Gaucher/genética , Enfermedad de Gaucher/patología , Glucosilceramidasa/genética , Glucosilceramidas , Atención Dirigida al PacienteRESUMEN
INTRODUCTION: The overnight change in hospital practice and service delivery during the COVID-19 pandemic raises the question whether undergraduate radiography students received an adequate clinical experience. Many students had their clinical placements cancelled, deferred or replaced with simulated learning. As a way of dealing with the pandemic some hospitals were dedicated to COVID-19 patients only resulting in many elective procedures being cancelled. Many patients also chose to stay away from the hospital out of fear of infection or the desire to reduce the burden on staff. This resulted in a limited range of examinations and clinical experience for those students who were able to complete their clinical placement. AIM: This study aims to investigate the impact of COVID-19 on the education and training of radiography students internationally in the United Kingdom Devolved Nations (UKDN) and the United Arab Emirates (UAE), to determine any possible impact on their future careers. METHOD: Ethical permission was sought and granted from the Research Ethics Committees (ID: 21-04-12-02 and ID:21/0032). An online survey was developed using Google Forms and link was shared with students via email. RESULTS: 262 students participated in the study [UAE (n = 60, 23%) and UKDN (n = 202, 77%)]. 72% stated that their clinical skills have improved and 82% were confident in the choice of radiography as a career. Participants from UAE displayed a higher tendency towards anxiety (p = 0.009). Students who were on clinical placements during the COVID-19 pandemic and worked with COVID-19 positive patients displayed less ongoing concern relating to COVID-19 (p = 0.004). 78% of the participants did not require wellbeing advice or request any type of wellbeing support from the higher education institutions (HEIs). Nevertheless, the study found that wellbeing of students was found to be negatively affected during the pandemic. CONCLUSION: Completing clinical placement during the COVID-19 pandemic allowed the continuation of education as students were allowed to improve their skills, confidence and resilience in coping with uncertainties and challenges. Undergraduate students should not be excluded from the clinical department during subsequent waves of COVID-19 or future pandemics to ensure continued workforce planning is possible. IMPLICATIONS FOR PRACTICE: HEIs should find solutions to compensate students for the loss of practical experience and skills due to the decreased number of patients in some areas of radiography practice. Providing academic and career counselling can assist students achieve their professional objectives and decrease the risk of attrition and problems upon qualification.
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COVID-19 , COVID-19/epidemiología , Humanos , Pandemias , Radiografía , Estudiantes , Emiratos Árabes Unidos/epidemiología , Reino UnidoRESUMEN
INTRODUCTION: The impact on the clinical training and education of healthcare students by COVID-19 has been documented. However, the thoughts and experiences of clinical tutors (CTs) about radiography students attending for clinical training and education during this now elongated period beyond first recognition of the virus has not been explored. This paper will discuss data collected from CTs in the UK Devolved Nations (UKDN) and the United Arab Emirates (UAE) who were compared because of their similarities in delivery based on individual 'rules of engagement' devised by their various health departments. AIM: The purpose of this study was to examine the clinical tutors' thoughts and experiences of supervising radiography students attending clinical placement during the COVID-19 pandemic. METHODS: The UK Devolved Nations (UKDN) and the United Arab Emirates (UAE) were selected for comparison on an international level as they are geographically distinct with a comparable population and education accredited/acknowledged by the Society and College of Radiographers (SCoR). Data was collected data from CTs across the UKDN and the UAE. The study used an online questionnaire (Google Forms) with closed questions in four themes including: students' experiences, impact on students' clinical placement, attitude of the clinical staff and the potential effects of COVID-19 on future graduates' skills and competencies. Further data was gathered on the experience of CTs mentoring students during the COVID-19 pandemic. RESULTS: Data were collected from 59 CTs (81%, n = 48) from UKDN and (19%, n = 11) UAE. Twenty-seven (46%) respondents reported that COVID-19 had a negative impact on clinical practical experience. However, 32 (54%) identified that COVID-19 had no impact on student supervision/feedback or on clinical achievements. Eleven (19%) respondents thought that students should not have been on clinical placement during the pandemic but a further 51% (n = 30) were happy with the students on placement and expressed willingness to delegate work to students. Interestingly, 58% (n = 34) of CTs suggested that future graduates may need a longer preceptorship after they graduate due to receiving decreased clinical experience during the pandemic. Overall, 78% (n = 46) of respondents thought that students improved their clinical confidence by working directly with COVID-19 positive patients. CONCLUSION: The current study has identified conflicting opinions across CTs in different clinical departments. Whilst some felt that students should not be in the hospital during the pandemic, others reported that working directly with COVID-19 patients had a positive impact on students as it improved their clinical confidence. Despite the challenges presented by COVID-19, CTs were able to provide direct clinical supervision and feedback to students on clinical placement throughout the pandemic. Nevertheless, future graduates may need a longer preceptorship period due to decreased clinical experience during the pandemic. IMPLICATIONS FOR PRACTICE: Clinical placements should continue during subsequent COVID-19 waves of infection or future pandemics to ensure development of skills in resilience and adaptability. Underdeveloped skills due to a decreased range of examinations can be rectified when any wave of the infection subsides by providing tailored training based on individual student's needs.
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COVID-19 , Estudiantes de Medicina , COVID-19/epidemiología , Retroalimentación , Humanos , Pandemias , PreceptoríaRESUMEN
INTRODUCTION: The first degree apprenticeship programme in diagnostic radiography was launched in March 2020. This route into radiography runs in parallel with 'conventional' pre-registration programmes where students apply to a higher education institution (HEI) and undertake discrete clinical placements. The aim of this study was to explore the perspectives of pre-registration students on the diagnostic radiographer degree apprenticeship route. METHODS: A qualitative approach (online questionnaire) gathered attitudes and opinions of pre-registration students from a single HEI, regarding the degree apprenticeship programme. Participants were pre-registration medical imaging students from all stages of the programme (n = 204). Braun and Clarks's thematic analysis was employed for data analysis. RESULTS: A response rate of 21% (n = 44) was recorded. Four themes emerged from data analysis: (1) misunderstandings surrounding the degree apprenticeship, (2) financial implications and (3) practical experience associated with both degree courses and (4) the experience the pre-registration degree has to offer. CONCLUSION: There was an apparent lack of understanding regarding the degree apprenticeship leading students to misinterpret aspects of the course. Additionally, students highlighted the earning aspect of the apprenticeship to be an advantage in comparison to student debts associated with the traditional pre-registration programmes. Furthermore, students emphasised the advantage of the clinical focus practice associated with the degree apprenticeship. Nevertheless, students who have selected the HEI route still value what the traditional pre-registration degree offers. IMPLICATIONS FOR PRACTICE: As degree apprenticeship programmes become widely available, a greater awareness should, therefore, follow. In the interim, there is scope for HEIs to seek to raise awareness of degree apprenticeship provision. HEIs should seek to allay any concerns and highlight the benefits of having this alternative route into the profession.
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Estudiantes de Medicina , Humanos , Radiografía , Encuestas y Cuestionarios , UniversidadesRESUMEN
The aim of this systematic review is to evaluate the accuracy of waferless osteotomy procedures in orthognathic surgery with a secondary aim to determine the cost-effectiveness of the procedure. A literature search was conducted on the databases PubMed and Scopus, with PRISMA guidelines followed. An initial yield of 4149 articles were identified, ten of which met the desired inclusion criteria. The total sample of patients undergoing waferless osteotomies included in this review was 142 patients. Nine of the studies used surgical cutting guides along with customised surgical plates to eliminate the surgical wafer and one study used pre-bent locking plates instead of customised plates. The eligible articles determined their surgical accuracy by comparing the positions of bony or dental landmarks on the pre-operative and post-operative images. The articles all reported acceptable accuracy within previously established clinical parameters. The majority of authors concluded that it is an accurate surgical approach and can be cost effective which is often a barrier to novel techniques however there were studies that contrasted the view of the cost efficacy. Due to the lack of published randomised controlled trials, current evidence is not strong enough to recommend the use of surgical cutting guides and customised/pre-bent plates for orthognathic surgery.
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Procedimientos Quirúrgicos Ortognáticos , Osteotomía , Cirugía Asistida por Computador , Análisis Costo-Beneficio , Humanos , Maxilar/cirugía , Procedimientos Quirúrgicos Ortognáticos/economía , Procedimientos Quirúrgicos Ortognáticos/métodos , Osteotomía/economía , Osteotomía/métodos , Cirugía Asistida por Computador/métodosRESUMEN
We examined PrEP use, condomless anal sex (CAS), and PrEP adherence among men who have sex with men (MSM) attending sexual health clinics in Wales, UK. In addition, we explored the association between the introduction of measures to control transmission of SARS-CoV-2 on these outcomes. We conducted an ecological momentary assessment study of individuals in receipt of PrEP in Wales. Participants used an electronic medication cap to record PrEP use and completed weekly sexual behaviour surveys. We defined adherence to daily PrEP as the percentage of CAS episodes covered by daily PrEP (preceded by ≥ 3 days of PrEP and followed by ≥ 2 days). Sixty participants were recruited between September 2019 and January 2020. PrEP use data prior to the introduction of control measures were available over 5785 person-days (88%) and following their introduction 7537 person-days (80%). Data on CAS episodes were available for 5559 (85%) and 7354 (78%) person-days prior to and following control measures respectively. Prior to the introduction of control measures, PrEP was taken on 3791/5785 (66%) days, there were CAS episodes on 506/5559 (9%) days, and 207/406 (51%) of CAS episodes were covered by an adequate amount of daily PrEP. The introduction of pandemic-related control measures was associated with a reduction in PrEP use (OR 0.44, 95%CI 0.20-0.95), CAS (OR 0.35, 95%CI 0.17-0.69), and PrEP adherence (RR = 0.55, 95%CI 0.34-0.89) and this may have implications for the health and wellbeing of PrEP users and, in addition to disruption across sexual health services, may contribute to wider threats across the HIV prevention cascade.
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Fármacos Anti-VIH , COVID-19 , Infecciones por VIH , Profilaxis Pre-Exposición , Minorías Sexuales y de Género , Fármacos Anti-VIH/uso terapéutico , COVID-19/epidemiología , COVID-19/prevención & control , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/epidemiología , Infecciones por VIH/prevención & control , Homosexualidad Masculina , Humanos , Masculino , Cumplimiento de la Medicación , Pandemias/prevención & control , SARS-CoV-2 , Conducta Sexual , Gales/epidemiologíaRESUMEN
BACKGROUND: CF is traditionally assessed in clinic. It is unclear if home monitoring of young people with CF is feasible or acceptable. The COVID-19 pandemic has made home monitoring more of a necessity. We report the results of CLIMB-CF, exploring home monitoring's feasibility and potential obstacles. METHODS: We designed a mobile app and enrolled participants with CF aged 2-17 years and their parents for six months. They were asked to complete a variety of measures either daily or twice a week. During the study, participants and their parents completed questionnaires exploring depression, anxiety and quality of life. At the end of the study parents and participants completed acceptability questionnaires. RESULTS: 148 participants were recruited, 4 withdrew prior to starting the study. 82 participants were female with median (IQR) age 7.9 (5.2-12 years). Median data completeness was 40.1% (13.6-69.9%) for the whole cohort; when assessed by age participants aged ≥ 12 years contributed significantly less (15.6% [9.8-30%]). Data completeness decreased over time. There was no significant difference between parental depression and anxiety scores at the start and the end of the study nor in CFQ-R respiratory domain scores for participants ≥ 14 years. The majority of participants did not feel the introduction of home monitoring impacted their daily lives. CONCLUSIONS: Most participants felt home monitoring did not negatively impact their lives and it did not increase depression, anxiety or decrease quality of life. However, uptake was variable, and not well sustained. The teenage years pose a particular challenge and further work is required.
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Fibrosis Quística/terapia , Aplicaciones Móviles , Monitoreo Fisiológico/métodos , Monitoreo Fisiológico/psicología , Calidad de Vida , Adolescente , Ansiedad , COVID-19/epidemiología , Niño , Preescolar , Depresión , Estudios de Factibilidad , Femenino , Humanos , Masculino , Pandemias , SARS-CoV-2RESUMEN
BACKGROUND: Routinely recorded data held in electronic health records can be used to inform the conduct of randomised controlled trials (RCTs). However, limitations with access and accuracy have been identified. OBJECTIVE: Using epilepsy as an exemplar condition, we assessed the attributes and agreement of routinely recorded data compared to data collected using case report forms in a UK RCT assessing antiepileptic drug treatments for individuals newly diagnosed with epilepsy. METHODS: The case study RCT is the Standard and New Antiepileptic Drugs II (SANAD II) trial, a pragmatic, UK multicentre RCT assessing the clinical and cost-effectiveness of antiepileptic drugs as treatments for epilepsy. Ninety-eight of 470 eligible participants provided consent for access to routinely recorded secondary care data that were retrieved from NHS Digital Hospital Episode Statistics (N=71) and primary and secondary care data from The Secure Anonymised Information Linkage Databank (N=27). We assessed data items relevant to the identification of individuals eligible for inclusion in SANAD II, baseline and follow-up visits. The attributes of routinely recorded data were assessed including the degree of missing data. The agreement between routinely recorded data and data collected on case report forms in SANAD II was assessed using calculation of Cohen's kappa for categorical data and construction of Bland-Altman plots for continuous data. RESULTS: There was a significant degree of missing data in the routine record for 15 of the 20 variables assessed, including all clinical variables. Agreement was poor for the majority of comparisons, including the assessments of seizure occurrence and adverse events. For example, only 23/62 (37%) participants had a date of first-ever seizure identified in routine datasets. Agreement was satisfactory for the date of prescription of antiepileptic drugs and episodes of healthcare resource use. CONCLUSIONS: There are currently significant limitations preventing the use of routinely recorded data for participant identification and assessment of clinical outcomes in epilepsy, and potentially other chronic conditions. Further research is urgently required to assess the attributes, agreement, additional benefits, cost-effectiveness and 'optimal mix' of routinely recorded data compared to data collected using standard methods such as case report forms at clinic visits for people with epilepsy. TRIAL REGISTRATION: Standard and New Antiepileptic Drugs II (SANAD II (EudraCT No: 2012-001884-64, registered 05/09/2012; ISRCTN Number: ISRCTN30294119 , registered 03/07/2012)).
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Anticonvulsivantes , Epilepsia , Anticonvulsivantes/efectos adversos , Registros Electrónicos de Salud , Epilepsia/diagnóstico , Epilepsia/tratamiento farmacológico , Humanos , Convulsiones/diagnóstico , Convulsiones/tratamiento farmacológico , Reino UnidoRESUMEN
BACKGROUND AND PURPOSE: Lumbar punctures may be performed by many different types of health care providers. We evaluated the percentages of lumbar punctures performed by radiologists-versus-nonradiologist providers, including changes with time and discrepancies between specialties. MATERIALS AND METHODS: Lumbar puncture procedure claims were identified in a 5% sample of Medicare beneficiaries from 2004 to 2017 and classified by provider specialty, site of service, day of week, and patient complexity. Compound annual growth rates for 2004 versus 2017 were calculated; t test and χ2 statistical analyses were performed. RESULTS: Lumbar puncture use increased from 163.3 to 203.4 procedures per 100,000 Medicare beneficiaries from 2004 to 2017 (overall rate, 190.3). Concurrently, the percentage of lumbar punctures performed by radiologists increased from 37.1% to 54.0%, while proportions performed by other major physician specialty groups either declined (eg, neurologists from 23.5% to 10.0%) or were largely unchanged. While radiologists saw the largest absolute increase in the percentage of procedures, the largest relative increase occurred for nonphysician providers (4.2% in 2004 to 7.5% in 2017; +78.6%). In 2017, radiologists performed most procedures on weekdays (56.2%) and a plurality on weekends (38.2%). Comorbidity was slightly higher in patients undergoing lumbar puncture by radiologists (P < .001). CONCLUSIONS: Radiologists now perform most lumbar puncture procedures for Medicare beneficiaries in both the inpatient and outpatient settings. The continuing shift in lumbar puncture responsibility from other specialists to radiologists has implications for clinical workflows, cost, radiation exposure, and postgraduate training.