Telehealth and inherited cardiac conditions: nursing during the COVID-19 pandemic

Abstract Aims Rate adaptation of the action potential ensures spatial heterogeneities in conduction across the myocardium are minimized at different heart rates providing a protective mechanism against ventricular fibrillation (VF) and sudden cardiac death (SCD), which can be quantified by the ventricular conduction stability (V-CoS) test previously described. We tested the hypothesis that patients with a history of aborted SCD due to an underlying channelopathy or cardiomyopathy have a reduced capacity to maintain uniform activation following exercise. Methods and results Sixty individuals, with (n = 28) and without (n = 32) previous aborted-SCD event underwent electro-cardiographic imaging recordings following exercise treadmill test. These included 25 Brugada syndrome, 13 hypertrophic cardiomyopathy, 12 idiopathic VF, and 10 healthy controls. Data were inputted into the V-CoS programme to calculate a V-CoS score that indicate the percentage of ventricle that showed no significant change in ventricular activation, with a lower score indicating the development of greater conduction heterogeneity. The SCD group, compared to those without, had a lower median (interquartile range) V-CoS score at peak exertion [92.8% (89.8–96.3%) vs. 97.3% (94.9–99.1%); P < 0.01] and 2 min into recovery [95.2% (91.1–97.2%) vs. 98.9% (96.9–99.5%); P < 0.01]. No significant difference was observable later into recovery at 5 or 10 min. Using the lowest median V-CoS scores obtained during the entire recovery period post-exertion, SCD survivors had a significantly lower score than those without for each of the different underlying aetiologies. Conclusion Data from this pilot study demonstrate the potential use of this technique in risk stratification for the inherited cardiac conditions.

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Evaluating the role of Cardiac Genetics Nurses in inherited cardiac conditions services using a Maturity Matrix

European Journal of Cardiovascular Nursing ◽

10.1177/1474515113502748 ◽

2013 ◽

Vol 13 (5) ◽

pp. 418-428 ◽

Cited By ~ 8

Author(s):

Maggie Kirk ◽

Amy Simpson ◽

Mark Llewellyn ◽

Emma Tonkin ◽

David Cohen ◽

...

Keyword(s):

Inherited Cardiac Conditions

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Patient & public involvement for inherited cardiac conditions

European Journal of Cardiovascular Nursing ◽

10.1093/eurjcn/zvab060.086 ◽

2021 ◽

Vol 20 (Supplement_1) ◽

Author(s):

T Bueser ◽

C Patch ◽

E Rowland ◽

L Coles ◽

A Metcalfe

Keyword(s):

Feasibility Study ◽

Health Research ◽

Public Involvement ◽

Phase 1 ◽

Psychoeducational Intervention ◽

Research Centre ◽

Study Patient ◽

Carrier Status ◽

Intervention Model ◽

Inherited Cardiac Conditions

Abstract 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.

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Catheter and Device Management of Inherited Cardiac Conditions

Heart Lung and Circulation ◽

10.1016/j.hlc.2019.12.009 ◽

2020 ◽

Vol 29 (4) ◽

pp. 594-606 ◽

Cited By ~ 1

Author(s):

Richard Bennett ◽

Timothy Campbell ◽

Saurabh Kumar

Keyword(s):

Device Management ◽

Inherited Cardiac Conditions

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A tailored approach to informing relatives at risk of inherited cardiac conditions: results of a randomised controlled trial

European Journal of Human Genetics ◽

10.1038/s41431-021-00993-9 ◽

2021 ◽

Author(s):

Lieke M. van den Heuvel ◽

Yvonne M. Hoedemaekers ◽

Annette F. Baas ◽

Marieke J. H. Baars ◽

J. Peter van Tintelen ◽

...

Keyword(s):

At Risk ◽

Randomised Controlled Trial ◽

Controlled Trial ◽

Tailored Approach ◽

Inherited Cardiac Conditions ◽

Randomised Controlled

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Congenital heart disease and inherited cardiac conditions

Oxford Handbook of Cardiac Nursing ◽

10.1093/med/9780198832447.003.0014 ◽

2020 ◽

pp. 309-332

Keyword(s):

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Smooth Transition ◽

Cardiac Structure ◽

Inherited Disorders ◽

Adult Services ◽

Wide Range ◽

Inherited Cardiac Conditions ◽

First Time

‘Congenital heart disease’ is a term used to cover a wide range of cardiac conditions that result from an abnormality of cardiac structure or function present at birth. The majority of children with congenital heart disease are managed in specialist paediatric centres. Not all will require further treatment as they grow older, but if they do the importance of a smooth transition to adult services is important. Some patients will be cared for in specialist units that cater for adults with congenital heart disease (ACHD), whereas others may not. Most cardiac nurses working in the cardiac arena can be expected to care for adult patients with congenital heart disease at some time in their career. They might also care for patients who present for the first time in adulthood with inherited disorders that have significant cardiovascular problems. The focus of this chapter is to highlight some of the issues that ACHD patients might present with in cardiac areas that do not specialize in ACHD.

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