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1.
PLOS Digit Health ; 3(8): e0000538, 2024 Aug.
Article in English | MEDLINE | ID: mdl-39137171

ABSTRACT

BACKGROUND AND OBJECTIVES: A key step in electrocardiogram (ECG) analysis is the detection of QRS complexes, particularly for arrhythmia detection. Telehealth ECGs present a new challenge for automated analysis as they are noisier than traditional clinical ECGs. The aim of this study was to identify the best-performing open-source QRS detector for use with telehealth ECGs. METHODS: The performance of 18 open-source QRS detectors was assessed on six datasets. These included four datasets of ECGs collected under supervision, and two datasets of telehealth ECGs collected without clinical supervision. The telehealth ECGs, consisting of single-lead ECGs recorded between the hands, included a novel dataset of 479 ECGs collected in the SAFER study of screening for atrial fibrillation (AF). Performance was assessed against manual annotations. RESULTS: A total of 12 QRS detectors performed well on ECGs collected under clinical supervision (F1 score ≥0.96). However, fewer performed well on telehealth ECGs: five performed well on the TELE ECG Database; six performed well on high-quality SAFER data; and performance was poorer on low-quality SAFER data (three QRS detectors achieved F1 of 0.78-0.84). The presence of AF had little impact on performance. CONCLUSIONS: The Neurokit and University of New South Wales QRS detectors performed best in this study. These performed sufficiently well on high-quality telehealth ECGs, but not on low-quality ECGs. This demonstrates the need to handle low-quality ECGs appropriately to ensure only ECGs which can be accurately analysed are used for clinical decision making.

2.
Health Qual Life Outcomes ; 22(1): 54, 2024 Jul 11.
Article in English | MEDLINE | ID: mdl-38992661

ABSTRACT

BACKGROUND: Individuals with transfusion-dependent ß-thalassemia (TDT) experience symptoms and functional impacts that reduce their health-related quality of life. However, EQ-5D-derived health utility index scores in TDT often indicate good HRQoL, suggesting the EQ-5D may not adequately capture the impact of TDT. This study explored the disease and treatment burden of TDT and examined the appropriateness of the EQ-5D-5L descriptive system (DS) in measuring HRQoL in TDT. METHODS: Adults with TDT in the United Kingdom, United States, and France completed a background questionnaire and EQ-5D-5L DS, followed by 60-minute semi-structured interviews on symptoms and HRQoL impacts of TDT (concept elicitation) and appropriateness of EQ-5D-5L DS (cognitive debrief). Transcribed interviews were analyzed using thematic and content analyses. The relationship between TDT symptoms and impacts were summarized in a conceptual model. EQ-5D-5L DS was mapped to concepts identified in the qualitative data to assess its capture of HRQoL concepts. Participants' EQ-5D-5L DS scores were compared to their qualitative descriptions for each dimension to assess their concordance. RESULTS: Thirty participants in the United States (n = 14 [46.7%]), United Kingdom. (n = 12 [40.0%]), and France (n = 4 [13.3%]) completed the study (73.3% female; mean age = 28.4 years [standard deviation (SD) = 5.1]; mean annual red blood cell transfusion [RBCT] frequency = 18.4 [SD = 7.6]). Participants reported TDT symptoms and impacts on HRQoL, all fluctuating across the RBCT cycle. EQ-5D-5L DS did not fully capture 11 of 16 (68.8%) HRQoL concepts reported. Most participants (n = 20/27 [74.1%]) reported that EQ-5D-5L DS did not capture important aspects of living with TDT, and 42.9% (n = 12/28) reported negative/neutral overall impressions of EQ-5D-5L DS. The highest degree of discordance between participants' qualitative data and EQ-5D-5L DS dimension scores was observed with mobility (42.3%) and self-care (34.6%), where the qualitative descriptions relating to these dimensions were worse than their quantitative scores. CONCLUSION: Current findings suggest that EQ-5D-5L DS lacks content validity and the derived health utility index score may not fully represent the burden of disease in TDT.


Subject(s)
Quality of Life , beta-Thalassemia , Humans , Female , Male , Quality of Life/psychology , Adult , beta-Thalassemia/psychology , beta-Thalassemia/therapy , Surveys and Questionnaires , United Kingdom , United States , France , Middle Aged , Blood Transfusion/psychology , Interviews as Topic , Young Adult , Qualitative Research
3.
J Clin Epidemiol ; 174: 111470, 2024 Jul 20.
Article in English | MEDLINE | ID: mdl-39038745

ABSTRACT

BACKGROUND: Inconsistent reporting of patient characteristics in clinical research hampers reproducibility and limits analysis opportunities. This paper proposes condition-specific 'Core Descriptor Sets' comprising key factors like demographics, disease severity, comorbidities, and prognosis to standardize Table 1 reporting. METHODS: Development entails stakeholder involvement, systematic identification of descriptors, value rating, and consensus-building using multiple Delphi rounds. Final agreement comes at an expert meeting. CONCLUSION: Benefits include easier cross-study comparison, for example, through individual patient meta-analysis, facilitated by comparison of consistently reported individual data rather than group-level analysis. This may also support routine data analyses, subgroup and risk identification, and reduced research waste. Core Descriptor Sets describe cohorts thoroughly while minimizing research burden. They are intended to enable improved clinical characterization, personalization, reproducibility, data sharing, and knowledge building.

4.
Europace ; 26(7)2024 Jul 02.
Article in English | MEDLINE | ID: mdl-38941497

ABSTRACT

AIMS: Single-lead electrocardiograms (ECGs) can be recorded using widely available devices such as smartwatches and handheld ECG recorders. Such devices have been approved for atrial fibrillation (AF) detection. However, little evidence exists on the reliability of single-lead ECG interpretation. We aimed to assess the level of agreement on detection of AF by independent cardiologists interpreting single-lead ECGs and to identify factors influencing agreement. METHODS AND RESULTS: In a population-based AF screening study, adults aged ≥65 years old recorded four single-lead ECGs per day for 1-4 weeks using a handheld ECG recorder. Electrocardiograms showing signs of possible AF were identified by a nurse, aided by an automated algorithm. These were reviewed by two independent cardiologists who assigned participant- and ECG-level diagnoses. Inter-rater reliability of AF diagnosis was calculated using linear weighted Cohen's kappa (κw). Out of 2141 participants and 162 515 ECGs, only 1843 ECGs from 185 participants were reviewed by both cardiologists. Agreement was moderate: κw = 0.48 (95% confidence interval, 0.37-0.58) at participant level and κw = 0.58 (0.53-0.62) at ECG level. At participant level, agreement was associated with the number of adequate-quality ECGs recorded, with higher agreement in participants who recorded at least 67 adequate-quality ECGs. At ECG level, agreement was associated with ECG quality and whether ECGs exhibited algorithm-identified possible AF. CONCLUSION: Inter-rater reliability of AF diagnosis from single-lead ECGs was found to be moderate in older adults. Strategies to improve reliability might include participant and cardiologist training and designing AF detection programmes to obtain sufficient ECGs for reliable diagnoses.


Subject(s)
Algorithms , Atrial Fibrillation , Electrocardiography , Feasibility Studies , Observer Variation , Humans , Atrial Fibrillation/diagnosis , Atrial Fibrillation/physiopathology , Aged , Reproducibility of Results , Female , Male , Electrocardiography/instrumentation , Electrocardiography/methods , Predictive Value of Tests , Aged, 80 and over , Signal Processing, Computer-Assisted , Heart Rate
5.
Orphanet J Rare Dis ; 19(1): 203, 2024 May 18.
Article in English | MEDLINE | ID: mdl-38760658

ABSTRACT

BACKGROUND: Activated phosphoinositide 3-kinase delta syndrome (APDS) is an ultra-rare primary immunodeficiency, with only 256 cases reported globally. This study aimed to explore the disease burden of APDS from the perspective of individuals with APDS and their caregivers. METHODS: Qualitative interviews were conducted with healthcare providers (HCPs), individuals with APDS and caregivers, to explore the symptoms and health-related quality of life (HRQoL) impact of APDS. Some individuals and caregivers also completed a narrative account exercise. All interviews were audio recorded and transcribed. Data were analysed using thematic analysis and saturation was recorded. RESULTS: Semi-structured qualitative interviews were conducted with healthcare providers (HCPs), individuals with APDS and caregivers. Individuals and caregivers had the option of completing a narrative account exercise. Six HCPs participated in an interview. Seven participants completed the narrative account exercise (N = 5 caregivers and N = 2 individuals with APDS) and 12 took part in an interview (N = 4 caregivers and N = 8 individuals with APDS). Themes identified from HCPs interviews included symptoms, clinical manifestations, HRQoL impacts and treatments/management of APDS. The narrative account exercise identified similar themes, but with the addition to the journey to diagnosis. These themes were explored during the individual/caregiver interviews. Reported clinical manifestations and symptoms of APDS included susceptibility to infections, lymphoproliferation, gastrointestinal (GI) disorders, fatigue, bodily pain, and breathing difficulties. HRQoL impacts of living with APDS included negative impacts to daily activities, including work, education and social and leisure activities, physical functioning, as well as emotional well-being, such as concern for the future, and interpersonal relationships. Impacts to caregiver HRQoL included negative impacts to physical health, work, emotional well-being, interpersonal relationships and family life and holidays. The management of APDS included the use of healthcare services and medications including immunoglobulin replacement therapy (IRT), rapamycin, prophylactic antibiotics, leniolisib, as well as medical procedures due to complications. CONCLUSIONS: APDS has a high disease burden and there is an unmet need for licensed, more targeted treatments which modify disease progression. This study was the first to describe the day-to-day experience and HRQoL impact of APDS from the perspective of individuals living with the condition, caregivers and treating physicians.


Subject(s)
Primary Immunodeficiency Diseases , Quality of Life , Humans , Female , Male , Adult , Caregivers/psychology , Qualitative Research , Cost of Illness , Class I Phosphatidylinositol 3-Kinases/genetics , Middle Aged , Adolescent , Health Personnel/psychology , Young Adult , Genetic Diseases, X-Linked/psychology , Child
6.
BMJ Open ; 14(4): e082047, 2024 Apr 25.
Article in English | MEDLINE | ID: mdl-38670614

ABSTRACT

INTRODUCTION: There is a lack of evidence that the benefits of screening for atrial fibrillation (AF) outweigh the harms. Following the completion of the Screening for Atrial Fibrillation with ECG to Reduce stroke (SAFER) pilot trial, the aim of the main SAFER trial is to establish whether population screening for AF reduces incidence of stroke risk. METHODS AND ANALYSIS: Approximately 82 000 people aged 70 years and over and not on oral anticoagulation are being recruited from general practices in England. Patients on the palliative care register or residents in a nursing home are excluded. Eligible people are identified using electronic patient records from general practices and sent an invitation and consent form to participate by post. Consenting participants are randomised at a ratio of 2:1 (control:intervention) with clustering by household. Those randomised to the intervention arm are sent an information leaflet inviting them to participate in screening, which involves use of a handheld single-lead ECG four times a day for 3 weeks. ECG traces identified by an algorithm as possible AF are reviewed by cardiologists. Participants with AF are seen by a general practitioner for consideration of anticoagulation. The primary outcome is stroke. Major secondary outcomes are: death, major bleeding and cardiovascular events. Follow-up will be via electronic health records for an average of 4 years. The primary analysis will be by intention-to-treat using time-to-event modelling. Results from this trial will be combined with follow-up data from the cluster-randomised pilot trial by fixed-effects meta-analysis. ETHICS AND DISSEMINATION: The London-Central National Health Service Research Ethics Committee (19/LO/1597) provided ethical approval. Dissemination will include public-friendly summaries, reports and engagement with the UK National Screening Committee. TRIAL REGISTRATION NUMBER: ISRCTN72104369.


Subject(s)
Atrial Fibrillation , Mass Screening , Stroke , Humans , Atrial Fibrillation/diagnosis , Atrial Fibrillation/complications , Aged , Stroke/prevention & control , Mass Screening/methods , Electrocardiography , England/epidemiology , Female , Male , Randomized Controlled Trials as Topic , Aged, 80 and over , Anticoagulants/therapeutic use
8.
BMC Public Health ; 24(1): 890, 2024 Mar 25.
Article in English | MEDLINE | ID: mdl-38528500

ABSTRACT

BACKGROUND: The early years is a critical stage to establish optimal nutrition and movement behaviours. Community playgroups are a relaxed environment for parents with a focus on social connection and supporting parents in their role as 'First Teachers'. Playgroups are therefore an opportunistic setting to promote health behaviours in the early years. To support parents with young children around healthy lifestyle behaviours, the Healthy Conversations @ Playgroup program was delivered in urban and regional areas, across three Australian jurisdictions between 2021-2023. OBJECTIVE: This qualitative evaluation aimed to understand how the Healthy Conversations @ Playgroup program was experienced by parents, playgroup coordinators and peer facilitators. DESIGN: Semi-structured virtual interviews and focus groups were conducted with parents, playgroup coordinators (i.e., person responsible for coordinating the playgroup) and peer facilitators (i.e., trained facilitator for the program) that participated in the Healthy Conversations @ Playgroup study. Transcripts were analysed following a thematic analysis approach. RESULTS: Twenty-eight playgroup parents, coordinators or peer facilitators participated in one of 8 focus groups or 5 interviews. Four themes were developed: Program strengths and challenges; Setting strengths and challenges; Factors that impact program delivery; Participant's suggestions for future program delivery. CONCLUSIONS: The Healthy Conversations @ Playgroup program was valued by parents, providing validation and normalisation of parenting practices, and fostering a shared experience of parenting. Playgroups are a convenient setting for families to attend. The dynamic and distracting nature of the playgroup setting were carefully considered when designing the program. Strategies to further enhance program engagement could include use of coordinator or parent champions, tailored delivery, and extending the reach to other family members. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12621000055808, registered 22 January 2021, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380890.


Subject(s)
Health Promotion , Parents , Child, Preschool , Humans , Australia , Health Behavior , Parenting , Qualitative Research , Clinical Trials as Topic
9.
BMJ Open ; 14(3): e081980, 2024 Mar 01.
Article in English | MEDLINE | ID: mdl-38431303

ABSTRACT

OBJECTIVE: The 'To Dip or Not to Dip' (TDONTD) intervention aims to reduce antibiotic prescribing for urinary tract infection (UTI) by reducing low-value dipstick testing. The aims of this study were to use a qualitative approach to (1) evaluate potential influences on the delivery of the TDONTD intervention in Australian residential aged care homes (RACHs) by identifying perceived barriers and enablers to delivery and acceptance; and (2) propose intervention strategies to address barriers and enhance enablers. DESIGN: A qualitative before-after process evaluation of a multisite implementation study using interviews with nurse and pharmacist implementers. SETTING: This study was conducted in 12 Australian RACHs. PARTICIPANTS: Participants included 17 on-site nurse champions and 4 pharmacists (existing contracted providers). INTERVENTION: Resources from England's TDONTD intervention were adapted for an Australian context. Key resources delivered were case-based education, staff training video, clinical pathway and an audit tool. RESULTS: Key barriers to TDONTD were beliefs about nursing capabilities in diagnosing infection, beliefs about consequences (fear of missing infection) and social influences (pressure from family, doctors and hospitals). Key enablers were perceived increased nurse and carer knowledge (around UTI and asymptomatic bacteriuria), resources from a credible source, empowerment of nurse champions to apply knowledge and skills in delivering operational change initiatives, pharmacist-delivered education and organisational policy or process change. Of TDONTD's key components, the clinical pathway substituted dipstick testing in diagnosing UTI, delivery of case-based education was enhanced by their attendance and support of the intervention and the antibiotic audit tool generated feedback that champions shared with staff. CONCLUSIONS: Our study confirms the core components of TDONTD and strategies to enhance delivery and overcome barriers. To further reduce barriers to TDONTD, broader advocacy work is required to raise awareness of dipstick testing as a low-value test in older persons and by linking it to healthcare professionals and consumer education.


Subject(s)
Health Personnel , Homes for the Aged , Aged , Humans , Aged, 80 and over , Australia , Qualitative Research , Anti-Bacterial Agents/therapeutic use
10.
iScience ; 27(4): 109357, 2024 Apr 19.
Article in English | MEDLINE | ID: mdl-38510139

ABSTRACT

Facioscapulohumeral dystrophy (FSHD) is linked to contraction of D4Z4 repeats on chromosome 4q with SMCHD1 mutations acting as a disease modifier. D4Z4 heterochromatin disruption and abnormal upregulation of the transcription factor DUX4, encoded in the D4Z4 repeat, are the hallmarks of FSHD. However, defining the precise effect of D4Z4 contraction has been difficult because D4Z4 repeats are primate-specific and DUX4 expression is very rare in highly heterogeneous patient myocytes. We generated isogenic mutant cell lines harboring D4Z4 and/or SMCHD1 mutations in a healthy human skeletal myoblast line. We found that the mutations affect D4Z4 heterochromatin differently, and that SMCHD1 mutation or disruption of DNA methylation stabilizes otherwise variegated DUX4 target activation in D4Z4 contraction mutant cells, demonstrating the critical role of modifiers. Our study revealed amplification of the DUX4 signal through downstream targets, H3.X/Y and LEUTX. Our results provide important insights into how rare DUX4 expression leads to FSHD pathogenesis.

11.
Br J Community Nurs ; 29(Sup3): S5-S6, 2024 Mar 01.
Article in English | MEDLINE | ID: mdl-38478423
12.
Europace ; 26(3)2024 Mar 01.
Article in English | MEDLINE | ID: mdl-38411621

ABSTRACT

AIMS: There are few data on the feasibility of population screening for paroxysmal atrial fibrillation (AF) using hand-held electrocardiogram (ECG) devices outside a specialist setting or in people over the age of 75. We investigated the feasibility of screening when conducted without face-to-face contact ('remote') or via in-person appointments in primary care and explored impact of age on screening outcomes. METHODS AND RESULTS: People aged ≥65 years from 13 general practices in England participated in screening during 2019-20. This involved attending a practice nurse appointment (10 practices) or receiving an ECG device by post (three practices). Participants were asked to use a hand-held ECG for 1-4 weeks. Screening outcomes included uptake, quality of ECGs, AF detection rates, and uptake of anticoagulation if AF was detected. Screening was carried out by 2141 (87.5%) of people invited to practice nurse-led screening and by 288 (90.0%) invited to remote screening. At least 56 interpretable ECGs were provided by 98.0% of participants who participated for 3 weeks, with no significant differences by setting or age, except people aged 85 or over (91.1%). Overall, 2.6% (64/2429) screened participants had AF, with detection rising with age (9.2% in people aged 85 or over). A total of 53/64 (82.8%) people with AF commenced anticoagulation. Uptake of anticoagulation did not vary by age. CONCLUSION: Population screening for paroxysmal AF is feasible in general practice and without face-to-face contact for all ages over 64 years, including people aged 85 and over.


Subject(s)
Atrial Fibrillation , Humans , Feasibility Studies , Mass Screening/methods , Electrocardiography/methods , Anticoagulants/therapeutic use
13.
Colorectal Dis ; 26(3): 428-438, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38296841

ABSTRACT

AIM: The heterogeneity in data quality presented in studies regarding Crohn's anal fistula (CAF) limit extrapolation into clinical practice. The ENiGMA collaborators established a core descriptor set to standardize reporting of CAF. The aim of this work was to quantify the use of these descriptors in recent literature. METHOD: We completed a systematic review of PubMed and the Cochrane Library, extracting publications from the past 10 years specific to the clinical interventions and outcomes of CAF, and reported in line with PRISMA guidance. Each article was assessed for inclusion of ENiGMA descriptors. The median number of descriptors per publication was evaluated along with the overall frequency of each individual descriptor. Use of ENiGMA descriptors was compared between medical and procedural publications. RESULTS: Ninety publications were included. The median number of descriptors was 15 of 37; 16 descriptors were used in over half of the publications while 17 were used in fewer than a third. Descriptors were more frequently used in procedural (n = 16) than medical publications (n = 14) (p = 0.031). In procedural publications, eight descriptors were more frequently used including Faecal incontinence, Number of previous fistula interventions, Presence and severity of anorectal stenosis and Current proctitis. Medical publications were more likely to include Previous response to biological therapy and Duration and type of current course of biological therapy. CONCLUSION: With many descriptors being used infrequently and variations between medical and procedural literature, the colorectal community should assess the need for all 37 descriptors.


Subject(s)
Crohn Disease , Rectal Fistula , Humans , Crohn Disease/therapy , Fecal Incontinence
14.
Sci Med Footb ; 8(2): 126-137, 2024 May.
Article in English | MEDLINE | ID: mdl-36803421

ABSTRACT

OBJECTIVES: The purpose of this prospective cohort study was to assess the associations between lower limb injuries in female team-sport athletes and a number of factors. The potential risk factors explored included (1) lower limb strength, (2) history of life-event stress, (3) family history of ACL injuries, (4) menstrual history, and (5) history of oral contraception use. METHODS: One hundred and thirty-five female athletes aged between 14 and 31 years (mean: 18.8 ± 3.6 years) from rugby union (n = 47), soccer (n = 72), and netball (n = 16) volunteered to participate in this study. Demographics, history of life-event stress, injury history and baseline data were obtained prior to the competitive season. The following strength measures were collected: isometric hip adductor and abductor strength, eccentric knee flexor strength and single leg jumping kinetics. Athletes were then followed for 12 months, and all lower limb injuries sustained were recorded. RESULTS: One hundred and nine athletes provided one-year follow-up injury data, of whom, 44 suffered at least one lower limb injury. All athletes who reported high scores for negative life-event stress sustained lower limb injuries. Non-contact lower limb injury was positively associated with weak hip adductor strength (OR: 0.88; 95%CI: 0.78-0.98; p = 0.017), and between-limb adductor (OR: 5.65; 95%CI: 1.61-19.7.; p = 0.007) and abductor (OR: 1.95; 95%CI: 1.03-3.71; p = 0.039) strength asymmetries. CONCLUSION: History of life event stress, hip adductor strength, and between-limb adductor and abductor strength asymmetries offer potential novel avenues for investigating injury risk factors in female athletes.


Subject(s)
Knee Joint , Leg Injuries , Humans , Female , Adolescent , Young Adult , Adult , Prospective Studies , Knee , Risk Factors , Leg Injuries/epidemiology , Athletes
15.
BMC Health Serv Res ; 23(1): 1194, 2023 Nov 02.
Article in English | MEDLINE | ID: mdl-37919707

ABSTRACT

OBJECTIVES: To assess the relative productivity of primary medical services in England and the impact of the COVID-19 pandemic on productivity levels. SETTING: Primary medical services for 59 million patients (98% of the population in England), in 101 clinical commissioning groups (CCGs), across two time periods: period 1, pre-pandemic, April to December 2019 and period 2, pandemic, April to December 2020. METHODS: We use data envelopment analysis (DEA) to assess relative productivity with four input measures (the number of full-time equivalent general practitioners, nurses, other direct patient contact staff and administrators), and five output measures (face-to-face appointments, remote consultations, home visits, referrals to secondary care and prescriptions). Our units of analysis were CCGs. DEA assigns an efficiency score to a CCG, taking a value between 0 and 100%, by benchmarking it against the most productive CCGs. We use Tobit regression to examine the association between productivity and other factors. RESULTS: The mean bias-corrected efficiency score of primary medical services in CCGs was 92.9% (interquartile range 92.0% to 95.7%) in period 1, falling to 90.6% (interquartile range 86.8% to 95.2%) in period 2. In period 1, CCGs with a higher proportion of registered patients aged over 65 years, higher levels of deprivation, lower levels of disease prevalence, higher nurse to GP ratios and higher GP to other direct patient contact staff ratios, achieved statistically significantly higher general practice efficiency scores (p < 0.05). In period 2, only the ratio of GP to other direct patient contact staff was associated with efficiency scores (p > 0.05). CONCLUSIONS: Our analysis indicates only modest geographic variation in productivity of primary medical services when measured at the level of clinical commissioning groups and a small reduction in productivity during the pandemic. Further work to establish relative productivity of individual GP practices is warranted once sufficient data on appointment rates by GP practice is available.


Subject(s)
COVID-19 , Remote Consultation , Humans , Aged , Pandemics , Primary Health Care , State Medicine , COVID-19/epidemiology , England/epidemiology
16.
Orphanet J Rare Dis ; 18(1): 316, 2023 Oct 11.
Article in English | MEDLINE | ID: mdl-37817256

ABSTRACT

BACKGROUND: Familial chylomicronemia syndrome (FCS) is a rare, hereditary, metabolic disorder. FCS causes high levels of triglycerides in the blood, which can lead to abdominal pain, xanthomas, and acute pancreatitis (AP). Volanesorsen, along with adherence to a very low-fat diet is used to reduce triglyceride levels in individuals with FCS. We aimed to understand the symptoms of FCS and their impact on health-related quality of life (HRQoL). METHODS: Interviews were conducted with individuals with genetically confirmed FCS in the UK and Spain, some of whom had been treated with volanesorsen. Interview guides were developed with input from a patient advocacy group to explore the symptoms, impacts and management of FCS. Interviews were conducted by telephone and were recorded and transcribed. Data were analyzed using thematic analysis and saturation was recorded. RESULTS: Seventeen interviews were conducted with individuals with FCS (aged 27-68 years), thirteen of whom were currently/previously treated with volanesorsen. Episodes of AP were the most impactful reported symptom, resulting in severe abdominal pain, nausea, vomiting, fever, bloating and appetite loss. Other symptoms and functional issues included abdominal pain, gastrointestinal symptoms, impaired cognitive function and fatigue. These had an impact on work, social activities, relationships and psychological wellbeing. These symptoms and impacts were illustrated in a conceptual model, including management strategies. The challenges of managing a low-fat diet and experience with volanesorsen were discussed. CONCLUSION: Individuals with FCS experience a range of interrelated symptoms and functional limitations which impact their broader HRQoL. Treatments which alleviate symptoms and reduce the incidence of AP episodes have the potential to improve the HRQoL of these individuals.


Subject(s)
Hyperlipoproteinemia Type I , Pancreatitis , Humans , Quality of Life , Acute Disease , Pancreatitis/etiology , Abdominal Pain/complications , Patient Outcome Assessment
17.
PLoS One ; 18(8): e0288469, 2023.
Article in English | MEDLINE | ID: mdl-37535633

ABSTRACT

The objective of this study is to investigate the application of machine learning techniques to the large-scale human expert evaluation of the impact of academic research. Using publicly available impact case study data from the UK's Research Excellence Framework (2014), we trained five machine learning models on a range of qualitative and quantitative features, including institution, discipline, narrative style (explicit and implicit), and bibliometric and policy indicators. Our work makes two key contributions. Based on the accuracy metric in predicting high- and low-scoring impact case studies, it shows that machine learning models are able to process information to make decisions that resemble those of expert evaluators. It also provides insights into the characteristics of impact case studies that would be favoured if a machine learning approach was applied for their automated assessment. The results of the experiments showed strong influence of institutional context, selected metrics of narrative style, as well as the uptake of research by policy and academic audiences. Overall, the study demonstrates promise for a shift from descriptive to predictive analysis, but suggests caution around the use of machine learning for the assessment of impact case studies.


Subject(s)
Health Facilities , Machine Learning , Humans , Narration
18.
Glob Health Med ; 5(3): 178-183, 2023 Jun 30.
Article in English | MEDLINE | ID: mdl-37397944

ABSTRACT

Similar to other countries, coronavirus disease (COVID-19) pandemic significantly impacted not only the ability of midwives to deliver high quality maternal care, but also their ability to access professional development opportunities, including in-service training in Cambodia. In response, we developed a Cambodian version of Safe Delivery App (SDA), aligned to Cambodia's clinical guidelines. The SDA is a free digital job aid and learning platform for skilled birth attendants developed by Maternity Foundation that works offline and is used in more than 40 countries after adapting to the country context. In the year and a half since its launch in June 2021, SDA has become established in Cambodia, with more than 3,000 people, accounting for nearly half the number of midwives in Cambodia, downloading and using it on their devices, and 285 people having completed its self-learning modules. The review of the introduction process revealed that publicity on the professional association's social networking sites, in-person in-depth hands-on training, and troubleshooting in a managed social networking group were useful in promoting the use of the application, and that the Continuing Professional Development Program accreditation has been a strong motivator for completing the self-study program. On the other hand, the COVID-19 pandemic has led to increased use of digital tools, but it is important to prevent the expansion of the digital divide when implementing new digital tools, including SDA.

19.
Sci Rep ; 13(1): 11703, 2023 07 20.
Article in English | MEDLINE | ID: mdl-37474512

ABSTRACT

Biocompatibility and the ability to mediate the appropriate flux of ions, urea, and uremic toxins between blood and dialysate components are key parameters for membranes used in dialysis. Oxone-mediated TEMPO-oxidized cellulose nanomaterials have been demonstrated to be excellent additives in the production and tunability of ultrafiltration and dialysis membranes. In the present study, nanocellulose ionic liquid membranes (NC-ILMs) were tested in vitro and ex vivo. An increase in flux of up to two orders of magnitude was observed with increased rejection (about 99.6%) of key proteins compared to that of polysulfone (PSf) and other commercial membranes. NC-ILMs have a sharper molecular weight cut-off than other phase inversion polymeric membranes, allowing for high throughput of urea and a uremic toxin surrogate and limited passage of proteins in dialysis applications. Superior anti-fouling properties were also observed for the NC-ILMs, including a > 5-h operation time with no systemic anticoagulation in blood samples. Finally, NC-ILMs were found to be biocompatible in rat ultrafiltration and dialysis experiments, indicating their potential clinical utility in dialysis and other blood filtration applications. These superior properties may allow for a new class of membranes for use in a wide variety of industrial applications, including the treatment of patients suffering from renal disease.


Subject(s)
Renal Dialysis , Toxins, Biological , Rats , Animals , Ultrafiltration , Dialysis Solutions , Proteins , Membranes, Artificial , Urea
20.
Int J Pharm Pract ; 31(4): 380-386, 2023 Jun 30.
Article in English | MEDLINE | ID: mdl-37186026

ABSTRACT

OBJECTIVES: New Zealand pharmacists have been providing immunisation services since 2011. Literature from other developed countries reports the positive experience of people with community pharmacy immunisation services resulting in expansion of the scope of pharmacy practice. However, there is a dearth of such data in a New Zealand context. Therefore, we aimed to understand patients' experiences with pharmacy immunisation services in New Zealand. METHODS: A self-administered questionnaire developed after considering the aims and objectives of the study, and previously published literature was delivered to 14 pharmacies covering a range of socio-economic areas across New Zealand. The survey assessed patients' experiences in a community pharmacy setting and measured their satisfaction using a 5-point Likert scale. KEY FINDINGS: Out of the 364 survey participants, 60.7% were female, 76.9% were of European ethnicity and 43.4% belonged to the age group of 45-64 years. Convenience (65.4%) and accessibility (44.8%) were cited as the most common reasons for choosing a community pharmacy to receive vaccinations. Over 90% of the respondents reported that they were satisfied with the pharmacy immunisation services, were vaccinated professionally, would choose a community pharmacy again next time for vaccination and would like to see pharmacists administering other vaccines. CONCLUSIONS: The pharmacy immunisation services were highly valued by patients because of the associated convenience and professionalism demonstrated by the pharmacists. A possible expansion of pharmacist-administered vaccination services to a wider range of vaccines will not only improve access to immunisation but will also potentially escalate immunisation rates.


Subject(s)
Community Pharmacy Services , Influenza Vaccines , Pharmacies , Pharmacy , Humans , Female , Middle Aged , Male , Vaccination/methods , Pharmacists
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