bluuebunny/crossref_metadata_2025 huggingface dataset:
BioERP: biomedical heterogeneous network-based self-supervised representation learning approach for entity relationship predictions
Authors: Wang Xiaoqi , Yang Yaning , Li Kenli , Li Wentao , Li Fei , Peng Shaoliang
Published: July 2021

Motivation

Predicting entity relationship can greatly benefit important biomedical problems. Recently, a large amount of biomedical heterogeneous networks (BioHNs) are generated and offer opportunities for developing network-based learning approaches to predict relationships among entities. However, current researches slightly explored BioHNs-based self-supervised representation learning methods, and are hard to simultaneously capturing local- and global-level association information among entities.

Results

In this study, we propose a BioHN-based self-supervised representation learning approach for entity relationship predictions, termed BioERP. A self-supervised meta path detection mechanism is proposed to train a deep Transformer encoder model that can capture the global structure and semantic feature in BioHNs. Meanwhile, a biomedical entity mask learning strategy is designed to reflect local associations of vertices. Finally, the representations from different task models are concatenated to generate two-level representation vectors for predicting relationships among entities. The results on eight datasets show BioERP outperforms 30 state-of-the-art methods. In particular, BioERP reveals great performance with results close to 1 in terms of AUC and AUPR on the drug–target interaction predictions. In summary, BioERP is a promising bio-entity relationship prediction approach.

Availability and implementation

Source code and data can be downloaded from https://github.com/pengsl-lab/BioERP.git.

Supplementary information

Supplementary data are available at Bioinformatics online.
Retrospective Cohort Study Comparing Infliximab-dyyb and Infliximab in Biologic-Naive Patients With Inflammatory Bowel Disease in the United States
Authors: Smith Joshua T , Velayos Fernando S , Niu Fang , Liu Vincent , Delate Thomas , Pola Suresh , Le Kim , Hui Rita L
Published: July 2021

Background

Real-world assessments of biosimilars are needed to understand their effectiveness and safety in practice settings that may differ from those seen in clinical trials or healthcare systems in different countries. To assess the effectiveness and safety of a biosimilar (infliximab-dyyb) and its reference product (infliximab) in patients with inflammatory bowel disease (IBD) in the United States.

Methods

We conducted a retrospective cohort study of biologic-naive patients with IBD who started treatment with infliximab-dyyb or infliximab. The study included 3206 patients identified through electronic health records in a US integrated healthcare delivery system. The effectiveness outcome was a composite of IBD-related surgery, IBD-related emergency room visit, and IBD-related hospitalization within 12 months of initiation. Safety outcomes included incidence of any or serious infection, cancer, acute liver dysfunction, and tuberculosis. We used a non-inferiority test with an upper-limit margin of 10% to analyze effectiveness. Doubly robust methods incorporating Cox proportional hazard regression with standardized inverse probability of treatment weighting were used to analyze both effectiveness and safety outcomes.

Results

The composite effectiveness outcome occurred in 107 of 870 patients (12.3%) in the infliximab-dyyb and 379 of 2336 patients (16.2%) in the infliximab groups. Infliximab-dyyb was non-inferior (P < .01) and was not different (hazard ratio [HR] 0.81; confidence interval [CI] 0.65–1.01; P = .06) to infliximab. Safety outcomes were not different between infliximab-dyyb and infliximab for any infections (HR 1.01; CI 0.86–1.17; P = .95), serious infections (HR 0.83; CI 0.54–1.26; P = .38), cancers (HR 0.83; CI 0.44–1.54; P = .55), and tuberculosis (HR 0.59; CI 0.10–3.55; P = .57).

Conclusions

Initiation of infliximab-dyyb was non-inferior to infliximab among biologic-naive patients with IBD in an US integrated healthcare delivery system.
Peritoneal dialysis improves quality-of-life in a left ventricular assist device destination therapy patient—a case report
Authors: Koppel Claire J , Jonker Jacqueline T , Michels Wieneke M , Beeres Saskia L M A
Published: July 2021

Background

Progressive renal insufficiency is frequent in heart failure patients with a left ventricular assist device (LVAD). The optimal strategy for long-term dialysis in LVAD patients and its effect on quality-of-life in these patients remain to be determined.

Case summary

Our 55-year-old patient with pre-existing renal insufficiency received an LVAD as destination therapy because of advanced ischaemic heart failure. Six years after implantation, he developed end-stage renal disease for which peritoneal dialysis (PD) was initiated. Left ventricular assist device flow alterations during ultrafiltration did not cause clinical or technical problems. The patient’s exercise capacity increased and quality-of-life improved. Over 7.5 years after LVAD implantation and 16 months after PD initiation, he died from encephalitis.

Discussion

Despite initial improvement, renal function often gradually decreases after LVAD implantation. Data on long-term renal replacement therapy in LVAD patients are limited. Haemodialysis is most commonly applied. Conceptually, however, PD has advantages over haemodialysis including less bloodstream infections, less haemodynamic shifts, and the comfort of the ambulant setting. This case illustrates that PD in an LVAD patient is feasible and improves quality-of-life. Key factors contributing to successful PD in LVAD patients may be a good right ventricular function and close cardiology–nephrology collaboration.
A case report of an interrupted inferior vena cava and azygos continuation: implications for preoperative screening in minimally invasive cardiac surgery
Authors: Knol Wiebe G , Oei Frans B , Budde Ricardo P J , ter Horst Maarten
Published: July 2021

Background

Femoral cannulation is commonly used in minimally invasive cardiac surgery to establish extracorporeal circulation. We present a case with a finding that should be evaluated when screening candidates for minimally invasive cardiac surgery.

Case summary

A 57-year-old male patient was scheduled for minimally invasive repair of the mitral and tricuspid valve and a MAZE procedure. During surgery there was difficulty advancing the venous cannula inserted in the right femoral vein. On transoesophageal echocardiography a guidewire advanced from the femoral vein was observed entering the right atrium from the superior vena cava. Despite inserting a second venous cannula in the jugular vein, venous drainage was insufficient for minimal invasive surgery. The approach was converted to a median sternotomy with bicaval cannulation. Re-examination of the preoperative computed tomography (CT) scan showed an interrupted inferior vena cava (IVC) with azygos continuation.

Discussion

In patients with major venous malformations such as the interrupted IVC with azygos continuation a full sternotomy is the preferred approach. The venous system should be evaluated when screening candidates for minimally invasive mitral valve surgery with preoperative CT. Additional cues to suspect interruption of the IVC are polysplenia and a broad superior mediastinal projection on the chest radiograph, mimicking a right paratracheal mass.
Double-blind randomized proof-of-concept trial of canakinumab in patients with COVID-19 associated cardiac injury and heightened inflammation
Authors: Cremer Paul C , Sheng Calvin C , Sahoo Debasis , Dugar Siddharth , Prada Robier Aguillon , Wang Tom Kai Ming , Hassan Ossama K Abou , Hernandez-Montfort Jamie , Wolinsky David A , Culver Daniel A , Rajendram Prabalini , Duggal Abhijit , Brennan Danielle M , Wolski Katherine E , Lincoff A Michael , Nissen Steven E , Menon Venu
Published: July 2021

Aims

In coronavirus disease 2019 (COVID-19), myocardial injury is associated with systemic inflammation and higher mortality. Our aim was to perform a proof of concept trial with canakinumab, a monoclonal antibody to interleukin-1β, in patients with COVID-19, myocardial injury, and heightened inflammation.

Methods and results

This trial required hospitalization due to COVID-19, elevated troponin, and a C-reactive protein concentration more than 50 mg/L. The primary endpoint was time to clinical improvement at Day 14, defined as either an improvement of two points on a seven-category ordinal scale or discharge from the hospital. The secondary endpoint was mortality at Day 28. Forty-five patients were randomly assigned to canakinumab 600 mg (n = 15), canakinumab 300 mg (n = 14), or placebo (n = 16). There was no difference in time to clinical improvement compared to placebo [recovery rate ratio (RRR) for canakinumab 600 mg 1.15, 95% confidence interval (CI) 0.46–2.91; RRR for canakinumab 300 mg 0.61, 95% CI 0.23–1.64]. At Day 28, 3 (18.8%) of 15 patients had died in the placebo group, compared with 3 (21.4%) of 14 patients with 300 mg canakinumab, and 1 (6.7%) of 15 patients with 600 mg canakinumab. There were no treatment-related deaths, and adverse events were similar between groups.

Conclusion

There was no difference in time to clinical improvement at Day 14 in patients treated with canakinumab, and no safety concerns were identified. Future studies could focus on high dose canakinumab in the treatment arm and assess efficacy outcomes at Day 28.
Content of Heart failure education by Health-care professionals in Noorder-Kempen, Belgium and Maastricht, the Netherlands: the INTERACT-in-HF study
Authors: Baldewijns K , Brunner-La-Rocca HP , Bektas S , Rhode C , De Maesschalck L , Deville A , Boyne JJJ
Published: July 2021

Funding Acknowledgements

INTERREG NWE IVb

Background

According to ESC-guidelines non-pharmacological interventions such as patient-education on lifestyle and self-care support are important to maintain quality of life (QOL) and to prevent (re)hospitalisation in Heart-Failure (HF). Additionally, these guidelines state that HF treatment should be organised in multidisciplinary programs. However, at this moment it remains unclear what kind of information and self-care support is provided by which health care (HC) professional in the regions Noorder-Kempen and Maastricht.

Purpose

The aim of this study is to describe which part of patient-education and self-care support is provided by different HC-providers in both regions

Methods

Semi-structured interviews with Cardiologists (CA), General Practitioners (GP’s) and Heart Failure Nurse (HFN) took place, followed by qualitative content analysis with a five-step approach, resulting in 2 main and 9 sub-themes.

Results

GP’s in both region express they spend very little time on life-style adjustments, symptom monitoring and self-care support.  GP’s in Noorder-Kempen spend most consultation time on physical follow-up and pharmacological treatment of HF-patients, leaving no or little time for non-pharmacological interventions. GP’s in Maastricht notice that non-pharmacological treatment is someone else"s responsibility e.g. practice nurses, HFN, CA.

All interviewed HC-professionals  inform patients considering their diagnosis. GP’s and CA in both regions educate patients considering pharmacological treatment and implanted devices. Moreover GP’s and CA in Noorder-Kempen emphasize the importance of compliance to therapy.  HFN in both regions offer comprehensive advice regarding lifestyle adjustments. HFN in Maastricht explicitly mention self-care support as an important part of their interventions.

Conclusion

Little regional differences could be found in the non-pharmacological interventions offered by the different HC professions involved in HF-management, however each profession has its own focus. GP’s and CA mainly focus on pharmacological and device therapy and therefore educate patients considering these aspects of HF-treatment. HFN mainly focus on lifestyle adjustments and self-care support.
Stem cell therapy in patients with nonischemic heart failure
Authors: Tomsic Z , Androcec V
Published: July 2021

Funding Acknowledgements

None

Background

Advanced chronic heart failure, characterized by a functional NYHA class III/IV, low LVEF, elevated B-type natriuretic peptides and other criteria’s is a big epidemiological problem, and its prevalence is increasing every year. There are many treatment options for patients with chronic and advanced heart failure. Treatment options include optimal medical therapy, treatment with cardiac resynchronization devices, left ventricular assist devices, heart transplantation and from 2006 treatment with CD 34 + stem cells.

Method

Patient inclusion criteria for stem cell therapy include dilated cardiomyopathy with no valve disease, hypertension or substance abuse, with optimal medical management for 6 months and a decreased left ventricular ejection fraction of <40%. Patients are treated with autologous pluripotent CD 34+ cells, which are mobilized in the blood stream with a bone marrow stimulant Filgrastim, administered subcutaneously for 5 days. The patients are educated by the nurses to do administer the injections at home, and have a contact number of our department in case of side effects. On the day of the procedure, stem cells are collected using the apheresis technique and then delivered transendocardialy in the catheterisation laboratory using the system for electromechanical mapping. If no complications develop, the patients can go home the next day.

Results

During follow-up visits patients treated with stem cells have an increased left ventricular ejection fraction, lower levels of NT-proBNP, increased distance of 6-minute walk test and increased survival compared with the control group. They also report better physical performance. 

Conclusion

 Stem cell therapy is thus a viable option and could become a mainstream therapy for the treatment of advanced heart failure in the future.
Implementation of shared decision-making for aortic stenosis: Development of a patient decision aid
Authors: Lauck S , Borregaard B , Lewis K , De Souza I
Published: July 2021

Funding Acknowledgements

Type of funding sources: None.

Background

 People living with aortic stenosis (AS) experience poor quality of life (QOL), repeat hospitalizations, and a poor prognosis in the absence of valve replacement. There is increasing equipoise in the evidence supporting the use of surgical aortic valve replacement (SAVR) and transcatheter aortic valve implantation (TAVI) in patients likely to derive survival and QOL benefit. A transition to a palliative approach may be a better option in the setting of excessive frailty and comorbid burden. Shared decision-making (SDM) is a bidirectional exchange between patients and health care providers that enables an information exchange about the best available evidence and decisions that consider patients" priorities. The goal is to inform and empower patients to participate in choosing the right decision. Patient decision aids (PDAs) are designed to support the process of SDM and help guide these conversation. To date, Canadians living with AS have not had access to a validated PDA. 

Study Design

  We will report on the design of the SharEd DEcision-MaKing for AS (SEEK-AS) study that aims to refine and comprehensively evaluate a set of PDAs and to build capacity for SDM through a unique partnership of patient and clinical knowledge users, multidisciplinary health care providers and researchers, and policy-makers. We will summarize the pilot work completed to obtain a debrief of patient resources used in all Canadian provinces, the draft development of a PDA in concert with a health policy initiative, and the design of an electronic platform to individualize risk in real time during a consultation. We will outline the components of SEEK-AS and the use of a cross-provincial comparative case study design to investigate how to establish an effective and sustainable approach for the implementation of the PDAs using the Knowledge-to-Action conceptual framework. 

Implications

 There is a pressing need for the development of evidence-based tools to strengthen the integration of patients" perspectives in the treatment of complex valvular heart disease given the rapid pace of change in technology, indications and practice. The study of the implementation of innovative strategies to achieve this goal is essential to accelerate the pace of change in clinical care.
Learning Health Care Network Heart Failure: towards a better Heart Failure care in Belgium
Authors: Baldewijns K , Smeets M , Vandenhoudt H
Published: July 2021

Funding Acknowledgements

Type of funding sources: Foundation. Main funding source(s): Koning Boudewijn Stichting, Fonds Dr. Daniel De Konick

Background

The best HF-care is provided in a seamless system that includes both community- and hospital care to avoid hospital readmission. Essential elements to included in such a system are a.o. discharge planning, follow-up, multidisciplinary patient education, teamwork incl. shared professional education, medication optimisation and implementation of care pathways across settings. 

Purpose

To facilitate seamless HF-care in Belgium trough capacity building in primary care and improved communication between primary and specialist care.

Methods

HeartsConnect, a Learning Health care Network Heart Failure (LHCN-HF) was established and unites eight regional integrated care projects in Flanders, the Flemish speaking region of Belgium. This LHCN-HF organizes regular symposia on relevant topics for their members. Furthermore, materials to facilitate professional and patient education are being developed. To scale-up integrated care the LHCN-HF works together with several stakeholders. In addition, the process and results of the participating projects will be evaluated.

Results

Four symposia have taken place since the start of the LHCN. The discussed topics were project evaluation and data collection, the roles in a multidisciplinary team, data sharing and best practises. Narrated PowerPoints considering HF-management for GP’s, pharmacists and physiotherapists are being developed in collaboration with their professional associations. To scale-up integrated HF-care, the LHCN-HF works in close collaboration with the Belgian Working Group on Heart Failure and the Flemish Hospital Network. Together with national organizations the LHCN strives for the recognition of HF-nurses, standardized discharge planning, reimbursement of NT-pro-BNP and HF-education and the training of primary care nurses (PCN) in terms of HF-education, aligned with the existing initiatives of HF-nurse education.

Conclusion 

At this moment a seamless system of HF-care is not yet in place in Belgium. However, the LHCN-HF together with several HF-stakeholders aims to bridge existing gaps between primary- and specialist HF-care.
Development and effectiveness of advance care planning protocol for heart failure outpatients
Authors: Higashitsuji AH , Okada SO , Fujisawa YF , Sano MS , Taguchi NT , Majima TM , Kobayashi YK
Published: July 2021

Funding Acknowledgements

Type of funding sources: None.

Background/Introduction

Heart failure has a poor prognosis, and the number of patients continues to increase. Moreover, since it is a disease that causes various sufferings, substantial end-of-life care is needed. Advanced care planning (ACP) is a part of end-of-life care for patients with heart failure. ACP provides patient decision-making opportunities, documenting end-of-life preferences, and increasing end-of-life conversation. However, the ACP intervention for patients with heart failure is not integrated, and studies are insufficient. In addition, Japan follows a non-Western culture, in which participation in the medical decision-making is reluctant and considered to be less prepared for ACP. Clarifying the effects of systematic ACP on patients with heart failure in Japan can be used to determine effective interventions in Japan and may provide effective ACP intervention for patients who have no preparedness worldwide.

Purpose

This study aimed to identify the effect of protocol-based intervention on the outcomes of ACP in Japanese outpatients with heart failure.

Methods

This is a single-center retrospective observational study. Data on patient attributes, conversation records, and document information from medical records of patients who have undergone intervention using the predeveloped ACP protocol were collected. Numerical data were statistically analyzed. ACP results were evaluated by performing deductive content analysis on the basis of existing frameworks. A subgroup analysis was performed on differences in ACP outcomes based on patient attributes.

Results

Data were collected from 13 patients who underwent ACP intervention. The median age was 69 years. Moreover, 76% were male, 84% were married, 76% were living with family, and 46% were receiving home-visit nursing care. New York Heart Association functional classification II was the most common in the severity classification of heart failure, and ischemic cardiomyopathy was the most common etiology. Documenting patient’s wishes, recording patient’s wishes in medical record, and identifying what brings value to patient"s life were achieved in 76% of the participants. Deciding surrogate decision makers, discussing values and care preferences with the surrogate, and discussing values and care preferences with health care professionals were achieved in 69% of the participants. Differences in patient attributes, such as age and presence or absence of home-visit nursing, did not affect ACP outcomes.

Conclusion

Protocol-based ACP allows patients with heart failure to determine surrogate decision makers and discuss care preferences with healthcare professionals, identify what they value, and record their wishes. The protocol-based ACP had a positive impact on ACP outcomes, without being restricted by patient attributes.
The psychological and behavioural factors associated with laypeople initiating CPR for out-of-hospital cardiac arrest: a systematic review
Authors: Farquharson B , Dixon D , Williams B
Published: July 2021

Funding Acknowledgements

Type of funding sources: Public grant(s) – National budget only. Main funding source(s): Chief Scientist Office, Scottish Government

OnBehalf

BICeP Study Group

Background

Prompt, effective CPR greatly increases the chances of survival in out-of-hospital cardiac arrest. However, it is often not provided, even by people who have previously undertaken training. Psychological and behavioural factors are likely to be important in relation to CPR initiation by lay-people but have not yet been systematically identified.

Objective

To identify the psychological and behavioural factors associated with CPR initiation amongst lay-people. 

Methods  

Data sources

Cochrane Library, MEDLINE, EMBASE, CINAHL, PsycInfo and Google Scholar. 

Study eligibility criteria

Primary studies reporting psychological or behavioural factors and data on CPR initiation involving lay-people published (inception to 15th January 2020).

Study appraisal and synthesis methods

Potential studies were screened and quality assessed independently by two reviewers. Study characteristics, psychological and behavioural factors associated with CPR initiation were extracted from included studies, categorised by study type and synthesised narratively. 

Results

Ninety studies (132,429 participants) comprising various designs, populations and of mostly weak quality were identified. The strongest and most ecologically valid studies identified factors associated with CPR initiation: the overwhelming emotion of the situation, perceptions of capability, uncertainty about when CPR is appropriate, feeling unprepared  and fear of doing harm. Current evidence is limited by a preponderance of atheoretical cross-sectional surveys using unvalidated measures with relatively little formal testing of posited ‘predictors’.

Conclusions

We will present the psychological and behavioural factors that are likely useful foci for future interventions aiming to increase CPR initiation. The literature in this area would benefit from more robust study designs which make greater use of theory.
Co-design of cardiac rehabilitation delivery in the aftermath of COVID-19, putting the patient view back in the picture
Authors: Caughers G , Bradley J , Donnelly P , Fitzsimons D
Published: July 2021

Funding Acknowledgements

Type of funding sources: Other. Main funding source(s): Research and Development PhD Fellowship

Background

Poor uptake and adherence to Cardiac Rehabilitation (CR) is a longstanding problem exacerbated by the Covid-19 pandemic. Since lockdown, several alternative formats have been utilised to adapt to social distancing requirements, but evaluation of these is needed1.

Purpose

This study uses Experience Based Co-Design to identify novel approaches to delivering CR in a post COVID-19 era.

Methods

Using a co-design approach 58 participants were recruited, these included staff, patients who attended, dropped out or did not attend CR. Interviews and focus groups were recorded, transcribed, and analysed using template analysis. The results will be depicted through video at a co-design workshop where innovative approaches will be discussed and prioritised by the study participants.

Results

The main themes developed from interview and focus group include 1. Staff & hospital treatment, 2. Patient characteristics, 3. Emotional state, 4. What Cardiac Rehabilitation is, 5. Time, location and delivery, 6. Self-Care and finally, 7. Technology. These themes are conveyed through a 15-minute trigger video along with quotations to stimulate discussion. Anticipated outcome will be 4-5 approaches which can be adapted for implementation.

Conclusion

The forthcoming co-design workshop will present findings to patients and staff in a virtual setting allowing valuable co-ownership of the outcomes. This presentation will describe an innovative process that has redesigned CR using the perspective of all stakeholders and sought to maximise choice and flexibility for a post-COVID climate.
The impact of the cardiac rehabilitation program in patients with mid-range heart failure (40-50%) in improving cardio respiratory predictors
Authors: Rodrigues HR , Ferreira V , Alves L , Sousa D , Pinto J , Pinto A , Rio P , Ferreira R
Published: July 2021

Funding Acknowledgements

Type of funding sources: Public hospital(s). Main funding source(s): Centro Hospitalar Universitário Lisboa Central

Methods

We studied 30 patients (P) with ejection fraction (EF) 40-50%, in a number of 198 P that participated in cardiac rehabilitation program (CRP). Of these P, 24 (80%) male and 6 (20%) female, 20 P were diagnosed myocardial infarction with ST-segment elevation, 2 P myocardial infarction non ST and 8 P with myocardial hypertrophy non ischemic. Of these P 30% were diabetics, 56% hypertension, 70% dyslipidemia, 36% smokers previous to CRP and body mass index 26,3 medium.

All P were submitted to previous echocardiogram, cardiopulmonary exercise testing (CET) and a rehabilitation program minimum 4 sessions and maximum 52 sessions. At the end of the total sessions the echocardiogram and CET were repeated.

Results

Of the 30 P that participated in CRP only 20 completed the program, while the other 10 P dropped out because of social and economic problems. Of the P that completed the CRP, 70% got better on EF, 80% improved VE/VCO2 slope < 33 therefore are classified VC-II in ventilatory classification (VC), 5% VE/VCO2 slope > 40  VC-III classification, and 15% maintained the initial classification.  50% of the P increased at least one level metabolic equivalent of task (MET) from the first CET. Only 3 of the 20 patients came, once, to the hospital after the CRP with heart failure, and one died but did not fulfill the program.

Conclusion

Patients with mid-range heart failure submitted to a CRP can improve cardiorespiratory predictors, leading to a better quality of life. However, it is important to find solutions to minimize the causes that make patients to give up CRP.
Patient & public involvement for inherited cardiac conditions
Authors: Bueser T , Patch C , Rowland E , Coles L , Metcalfe A
Published: July 2021

Funding Acknowledgements

National Institute for Health Research

OnBehalf

King"s Health Partners Patient & Public Involvement for Inherited Cardiac Conditions (PPIICC) group

Background

Inherited Cardiac Conditions (ICCs) affect up to 1:200 of the population and is the leading cause of sudden death in the under 40s. Research into developing interventions to support patients as they adjust to their diagnosis and genetic carrier status is underway; an example of which is the Psychoeducational Intervention Supporting patients with an ICC (PISICC) study. To ensure the appropriateness, acceptability and applicability of the intervention, patients and the public were involved in the development of PISICC intervention.

Purpose

To ensure the relevance and improve the quality of the PISICC study, Patient & Public Involvement for Inherited Cardiac Conditions  (PPIICC) group was organised to guide the research project as this progressed through the three phases of the Medical Research Council framework for developing complex interventions.

Methods

Utilising INVOLVE guidelines, the PPIICC group was initiated by the researcher by inviting patients and families attending a local ICC clinic, members of the patient support group, Cardiomyopathy UK; and members of the existing PPI group of the local biomedical research centre. Ground rules, terms of engagement and provisions for meetings such as rooms, reimbursements for transport costs, childcare and compensation for time was established. The PPIICC group met up to three times per year within a three-year period with electronic exchanges in between. Members gave individual feedback to draft study materials and their views shaped the final versions. A modified Delphi study was used for the development of the PISICC intervention model. Figure 1 illustrates the activities undertaken by the group.

Results

The involvement of the PPIICC group throughout the development of the PISICC intervention model has contributed to the successful recruitment of 32 participants and completion of the qualitative study in Phase 1. In Phase 2 the group had a crucial role in ensuring that the education component of the PISICC intervention included  advice on medication and physical activity; and for the group component of the intervention to include a mixed age group to enable sharing of varied experiences. In planning for Phase 3, the PPIICC group helped ensure that the trial processes for the planned feasibility study were not burdensome to participants which supported its full ethical approval by the UK Health Research Authority.

Conclusions

Patients and their families played an important role in designing the PISICC study. So far, their involvement has resulted in reaching recruitment targets for Phase 1 of the study, the development of a patient-informed psychoeducational intervention model and feasibility study protocol.
Caring for patients with a congenital heart defect: a national survey of the educational needs of nurses
Authors: Griffiths L , Seaton S , Lotto R
Published: July 2021

Funding Acknowledgements

Type of funding sources: None.

Background

Around 1 in every 130 babies are born with a structural heart defect. Over the past half century, advances in treatment have resulted in increasing numbers surviving with complex disease. Currently,  around 90%  survive into adult life. In order for these patients to receive a high standard of care throughout their lifespan,  it is imperative that nurses are educated appropriately. This is supported by the NHS England Standards (2016), which provides recommendations on minimum staffing levels, but also demands that staff are competent to deliver that care.  Aims: The aim of this study was to explore the educational needs of nurses who may encounter this group of patients. Methods:  A national online survey was undertaken between 4/06/2020 to 06/07/2020.  Results:  A total of 513 individual survey responses were received from both paediatric and adult nurses and AHPs (representative of an all age service), working in all levels of care. Regardless of where the nurse worked, band 5 nurses reported a higher level of anxiety about caring for patients with congenital heart disease (CHD) in comparison to the whole cohort (18% versus 12%). In the previous two years, 30% of the band 5 staff had received no training.  Of the band 5s who had received no training, 71% were based in non-CHD settings. Both band 5 nurses and staff of all grades working in non-CHD centres identified managing emergencies (band 5: 77% and non-CHD: 76%), caring for a patient with CHD (band 5: 71% and non-CHD: 72%) and a simple understanding of CHD (band 5: 61% and non-CHD: 67%) as priority topics. Whilst the majority of band 5, and non-CHD centre nurses who had received recent education had undergone a local study day (band 5: 33% and non-CHD: 34%) or self-directed learning (band 5: 38% and non-CHD: 31%), formal or accredited courses were rated most desirable (band 5: 93 and non-CHD: 84%).  Conclusion Whilst education within specialist level 1 and 2 centres appears to be well developed and embedded, junior nurses (band 5) and particularly those working in non-cardiac units, appear to be being left behind. Easy access information pertaining to emergency care, alongside simple descriptions of care requirements would benefit those nurses who rarely encounter CHD patients. Digital and other innovative approaches may work well as memory aids and provide a solution alongside formal training. Consideration to including fundamentals of care within the nursing curriculum would potentially provide a base from which nurses can develop. Preferences for accredited, formal study sessions support the need for further development of post graduate education.
Evaluation and Cardiac Rehabilitation on a patient with a congenital heart disease
Authors: Felix A
Published: July 2021

Funding Acknowledgements

Type of funding sources: None.

Introduction

Severe congenital heart disease (CHD) requiring surgical intervention occurs in 6 of 1000 live-born infants. Substantial improvements in surgical treatment and perioperative care have led to excellent long-term cardiac outcomes for most of these patients and, consequentially, to a significant increase in survival rates.

Formal evaluations of preschool, school-aged children and adolescents born with complex CHD demonstrate a pattern of neurodevelopmental sequelae, which may appear alone, or in combination.

Purpose

F. is a 21 years-old patient with repaired complex transposition of the great arteries with ventricular septal defect, who have already undergone three surgeries: a) an initial palliative surgery (pulmonary artery banding and ductus arteriosus ligation) at the neonatal period; b) a corrective surgery (arterial switch and VSD closure) at the end of the first year of life and c) Pulmonary artery plasty for residual pulmonary stenosis at the age of 16 years-old. Now, he was admitted to our department for urgent wide-complex tachycardia treatment.  His initial assessment documented a subjectively impaired motor development, and subsequently, a formal assessment was performed.

Methods

The Bruininks-Oseretsky Test of Motor Proficiency, second edition (BOT-2) is an individually administrated test that resorts to a series of engaging, goal-directed activities to measure a wide array of motor skills in individuals ages 4 through 21. The BOT-2 uses a subtest and composite structure that highlights motor performance in the broad functional areas of stability, mobility, strength, coordination, and object manipulation.

Results

Patient"s performance in the four main motor skill areas will be report, namely: Fine Manual Control, Manual Coordination, Body Coordination, and Strength and Agility. Because Fabio completed all four parts of the BOT-2, a comprehensive score from all four areas, the Total Motor Composite, will also be reported. Fabio"s scores were compared to the ones of a control group of age and gender-matched individuals.

This Patient started sessions of Cardiac Rehabilitation. The rehabilitation sessions are conducting for 1 hour three times a week for 1 year. This program still in progress, but we speculate that the will improve his motor abilities and developmental skills.

Conclusion

The risk of a poor developmental outcome varies according to the specific cardiac effect. In addition, there is significant interindividual variation in developmental outcome even among children with the same cardiac defect. Other factors may contribute to neurologic dysfunctions. These factors can be divided into three main categories and time-frames: prenatal, perioperative and post-discharge.
Awareness on the coronary heart disease patient - a case series
Authors: Teixeira Rodrigues D , Ferreira G
Published: July 2021

Funding Acknowledgements

Type of funding sources: None.

Background

Each year cardiovascular disease (CVD) causes 3.9 million deaths in Europe, accounting for 45% of all deaths. CVD are especially relevant not only due to the high mortality rate related to them, but also due to the disability associated with them. In Portugal, one of the specific skills of the medical-surgical nurse is to take care of the person and family / caregivers experiencing complex medical processes (such as acute coronary syndrome - ACS), resulting from chronic disease (such as coronary heart disease - CHD). The medium-range theory of transitions, by Meleis and collaborators, helps to frame the theoretical aspects in nursing practice. Nursing approaches to the person with CHD, are often focused on transmitting knowledge and teaching abilities, regardless of the perception the person may have of the need to pursue changes in his/her life.

Purpose

This study aimed at gathering information on how a person perceives, has knowledge, and recognises an acute coronary event as a moment of transition. It is intended to evaluate the level of awareness the person has of his/her situation in this health-illness transition, as to incorporate an approach based upon the transition’s theory.

Methods

The study was conducted on a Cardiology ward and Intensive Care Unit of a tertiary hospital in Northern Portugal, on the second half of September 2020. All patients admitted with an ACS were eligible. A qualitative research framework was adopted, using the semi-structured interview. When phrasing some questions, the phenomenological approach was adopted.

Results

Four patients were included. Their interviews showed a wide variability of knowledge about the motive for admission or what caused it; there was an uneven perception of the severity of the event; in general, they did not recognize the need to make changes in their lives or externalized the responsibilities for it. This study was limited by a reduced number of interviews conducted, limiting the generalization of the findings and conclusions, though it was not the purpose of this exercise. Also, the interviews were performed in different moments after admission, so some of the patients had already been approached by the nursing staff in moments of health education, which may lead to information bias.

Conclusions

The traditional health education approach based on teaching the patients a set number of items needed to achieve a healthier lifestyle after an ACS, seem to produce very variable effects on how the person recognizes, perceives, and knows about his/her condition. The transition theory framework may be useful to engage patients in the process and, considering the reduced length of stay in the hospital, it is necessary the transition of care to the community. Awareness is a central concept in the patient"s adaptive process and, therefore, a major theme for nursing practice. Considering the apparent scarcity of evidence about it, it reveals to be an area of future investment.
The frailty and falling in related with functional performance, balance and physical activity in elderly during Covid-19 pandemics
Authors: Utku G , Akinci B , Yilmaz E , Erdinc E , Atmaca I , Gurlek E , Ozdincler A
Published: July 2021

Funding Acknowledgements

Type of funding sources: None.

Background

Falls and frailty are main causes of morbidity and frequenty associated with functional performance, balance and physical activity. The restrictions imposed by the COVID-19 pandemic force the elderly to spend most of their time at home which may cause further functional problems. Therefore, identifying the risk factors during the pandemic can help to prevent the elderly from frailty and falls. Aim: Our aims are to investigate the clinical frailty profile and falls in relation to functional performance, balance, fear of falling and physical activity and to compare these parameters of the elderly with and without falling history during the COVID-19 pandemics. Method: Thirty-three participants aged 65-85 (mean = 71.33 ± 5.35/years, 20 women, 13 men) who have never had COVID-19 were included in the study. The participants were invited to an online video-conference based assessment. The number of falls during the last year were asked. Clinical frailty severity was assessed with Clinical Frailty Scale. The fear of falling were assessed using Falls Efficacy Scale (FES). The functional performance of the participants were tested with 30 seconds Sit-to-Stand test. The balance and mobility was evaluated with Timed-Up and Go test in a 3 meter corridor. The physical activity level of the participants were questioned using International Physical Activity Questionnaire-Short Form (IPAQ-SF) and vigorous level of physical activity (VPA), moderate level of physical activity (MPA) and walking were also calculated. Results: The mean scores of the outcomes among participants were shown in Table 1. Clinical frailty was significantly higher in women compared to men (p = 0.08). Clinical frailty score, fear of falling and sit to stand performance were significantly worse in fallers. There were negative weak to moderate correlations between frailty and sit to stand performance (p = 0.001) and MPA (p = 0,016). The clinical frailty was also positively correlated with FES (p < 0.001). FES showed positive correlation with Time-Up and Go performance (p = 0.001) and negative correlation with sit to stand performance (p < 0.001) and MPA (p = 0,036). Conclusion: Our results demonstrated that; clinical frailty, fear of falling and sit to stand performance were associated with the fall history in elderly. In addition, clinical frailty score were higher in women. Our results indicate that, people who have fall history may tend to be frailer and may have lower functional performance, balance and physical activity. The encouragement of the elderly to increased physical activity and exercise program may decrease the frailty score and falling risk especially in elderly women during COVID-19 pandemics.
Co-designing digital cardiac rehabilitation with patients living in rural and remote australia - the country heart attack prevention project
Authors: Nesbitt KATIE , Beleigoli A , Du H , Clark RA , Tirimacco R
Published: July 2021

Funding Acknowledgements

Type of funding sources: Private grant(s) and/or Sponsorship. Main funding source(s): Co-sponsored National health Medical Partnership Grant

OnBehalf

the country heart attack prevention project

Background/significance. Cardiac rehabilitation (CR) significantly reduces death, reoccurring cardiac events, hospital admissions while improving quality of life. However, it is still poorly attended with participation rates worldwide between 20-50%, worsened for rural and remote patients by the tyranny of distance, work responsibilities and transportation. Web-based CR can provide an alternative, patient centred, flexible delivery option. Co-design with consumers and clinicians is recommended to tailor web-based CR to their needs and preferences as a means of increasing attendance.

Purpose. The objective of this study is to describe how patient-generated data through workshops on desired content and features informs technology and implementation specifications for the patient portal of a CR website.

Methods. UX Design theoretical framework, using a co-design workshop, with thematic analysis, a survey, and the System Usability Scale was used to report outcomes.

Results. Based on the feedback from participants in rural and remote SA, desired content and features were updated for improving user experience. We recruited 27 participants across 4 regional Local health Networks in SA. The median age of participants was 71.0 (IQR 58-78), 14 (51.9%) were female and 27 (100%) had completed a cardiac rehabilitation program. More than half used a smart phone (16; 59.3%) and Facebook (21; 77.8%). Overall usability remains low based on a mean SUS score of 63.4 (SD 21.1), however there was a tendency to usability improving over time.

Conclusion. The co-design process has contributed to the development of the CR website, improving desired content and features. Improved usability scores can be achieved through further incorporating consumer feedback into the development of the CR website.
Developing an implantable cardioverter defibrillator patient education program: preliminary findings of a knowledge translation project
Authors: Forman J , Murtagh E , Cheung J , Macleod S , Chakrabarti S , Lauck S
Published: July 2021

Funding Acknowledgements

Type of funding sources: None.

Background

The implantable cardioverter defibrillator (ICD) provides effective prevention of sudden cardiac death in select populations. Its impact on quality of life (QOL) is associated with mixed results because of treatment delivery, risks and potential complications. Studies have shown comprehensive education before implantation contributes to informed decision-making and improved QOL. Providing peer support and opportunity to obtain real-life experiences from individuals living with an ICD is pivotal to effective education. Joint leadership with patients is an effective strategy to meet these goals as part of a patient and family-centred approach to care.

Purpose

Our objective was to adapt this knowledge and design an education program co-led by clinicians and patient partners to provide information, support treatment decision, and facilitate patients’ adaptation to living well with an ICD.

Methods

Patient partners with previously implanted ICDs were recruited from a regional network matching volunteers with healthcare providers seeking to engage patients and families in quality care processes. A monthly 1-hour, in-person group education session was developed by the Heart Rhythm Program team. Potential and newly implanted patients from two tertiary sites were invited to attend sessions combining education led by the clinical team and facilitated discussion with the patient co-leads. Participants completed an evaluation questionnaire inclusive of open-ended and Likert scale questions developed by the team. Sessions were halted for three months at the onset of the Covid-19 pandemic but resumed solely using a video conferencing platform.

Results

Since implementation in November 2018, there have been 62 in-person attendees and 34 using a virtual videoconferencing platform (female 31%, median age 62 years). All participants who attended in-person reported finding the session helpful with positive comments regarding the ability to have specific questions addressed in an informal, non-stressful environment. Virtual attendees did not complete written evaluations but positive feedback was received regarding session content and satisfaction in the ability to participate virtually. The involvement and contributions of the patient partners were consistently described as the most valuable component. Findings were used in an iterative fashion to inform session format and content.

Conclusion

In the era of patient-centred care and shared decision-making, it is imperative to integrate effective strategies that forefront patient voices and leadership. Transitioning to a virtual method of delivery was highly successful and demonstrated the importance of continuing this knowledge translation project providing practice-ready recommendations to healthcare providers to help address the needs of patients living with an ICD.