scholarly journals Using co-design to develop an online intervention for families after a sudden cardiac death in the young

2021 ◽  
Vol 20 (Supplement_1) ◽  
Author(s):  
L Yeates ◽  
K Gardner ◽  
J Do ◽  
L Van Den Heuvel ◽  
G Fleming ◽  
...  
Keyword(s):  
Sudden Cardiac Death ◽  
Focus Groups ◽  
Family Relationships ◽  
Cardiac Death ◽  
Heart Diseases ◽  
Family Members ◽  
Psychological Needs ◽  
User Preference ◽  
Online Support ◽  
Support Intervention

Abstract Funding Acknowledgements Type of funding sources: Foundation. Main funding source(s): National Heart Foundation of Australia / NHMRC Co-funded Post Graduate Scholarship Introduction Sudden cardiac death (SCD) is a devastating complication of many genetic heart diseases. The psychological impact on surviving family members is significant and lifelong. Previous needs analysis found medical and psychological needs are of high importance but remain unmet in some cases. Co-design is an increasingly popular research method for the development of interventions and services that include users as contributing members of the research team. Previous research has shown co-design leads to innovative ideas that better address user needs. Purpose To use co-design to develop an online support intervention for families after SCD. Methods Semi-structured moderated online focus groups were held with key stakeholders, including family members who had experienced young SCD, healthcare professionals and researchers. Guided discussions were used to co-design an online support intervention. Thematic analysis of discussions and iterative feedback on draft materials guided content development. Results Four focus groups were held (average 11 participants per group). Stakeholder involvement facilitated development of high-level ideas and priority issues. Key benefits included creative content and materials developed based on user preference for stories, narratives and information reflecting everyday experience of families navigating the legal and medical processes surrounding SCD, normalising and supporting grief responses in the context of family relationships, and fostering hope. Conclusion Co-design supported creative presentation, tailoring of information and development of psychosocial interventions to meet the needs of SCD families. Further work is needed to pilot and trial the intervention, prior to it becoming a key resource in the care of these families.

scholarly journals Co-designing an online COmmunity suPporting familiEs after Sudden Cardiac Death (COPE-SCD) in the young

2021 ◽  
Author(s):  
Laura Yeates ◽  
Karen Gardner ◽  
Judy Do ◽  
Lieke van den Heuvel ◽  
Gabrielle Fleming ◽  
...  
Keyword(s):  
Sudden Cardiac Death ◽  
Focus Groups ◽  
Family Relationships ◽  
Cardiac Death ◽  
Healthcare Professionals ◽  
User Preference ◽  
Online Support ◽  
Digital Information ◽  
Support Intervention ◽  
Grief Responses

Objective: To co-design an online support intervention for families after sudden cardiac death (SCD) in the young (<35 years). Design: Co-design of a SCD family intervention by stakeholder focus groups. Setting: Families and healthcare professionals with experience in SCD in the young. Participants: Semi-structured online focus groups were held with key stakeholders, i.e. family members who had experienced young SCD, healthcare professionals and researchers. Guided discussions were used to develop an online support intervention. Thematic analysis of discussions and iterative feedback on draft materials guided content development. Results: Four focus groups were held (10-12 participants per group). Stakeholder involvement facilitated development of high-level ideas and priority issues. Creative content and materials were developed based on user preference for stories, narratives and information reflecting everyday experience of families navigating the legal and medical processes surrounding SCD, normalising and supporting grief responses in the context of family relationships, and fostering hope. Emphasis on accessibility led to the overarching need for digital information and online engagement. These insights allowed development of an online intervention - COPE-SCD: A COmmunity suPporting familiEs after Sudden Cardiac Death - which includes a website and online support program. Conclusion: Using co-design with stakeholders we have developed a support intervention that directly addresses the needs of SCD families and fills a large gap in existing health care. We will evaluate COPE-SCD to determine whether this is an effective intervention for support of families following a young SCD.

scholarly journals Patients’ and family members’ perspectives on arrhythmias and sudden death in dialysis: the HeartLink focus groups pilot study

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Eric J. Xu ◽  
LaPricia Lewis Boyer ◽  
Bernard G. Jaar ◽  
Patti L. Ephraim ◽  
Luis Gimenez ◽  
...  
Keyword(s):  
Cardiovascular Disease ◽  
High Risk ◽  
Sudden Cardiac Death ◽  
Focus Groups ◽  
Cardiac Death ◽  
Disease Risk ◽  
Cardiovascular Disease Risk ◽  
Family Members ◽  
Risk Of Death ◽  
Study Population

Abstract Background Patients receiving dialysis face a high risk of cardiovascular disease, arrhythmia and sudden cardiac death. Few patients, however, are aware of this risk. Implantable cardiac monitors are currently available for clinical use and can continuously monitor cardiac rhythms without the need for transvenous leads. Our goal was to gauge patients’ and family members’ perceptions of these risks and to identify their concerns about cardiac monitors. Methods Two 90-minute focus groups were conducted: one with patients receiving in-center hemodialysis and one with their family members. Trained moderators assessed: (1) knowledge of cardiovascular disease; (2) cardiovascular disease risk in dialysis; (3) risk of death due to cardiovascular disease; (4) best ways to convey this risk to patients/families; and (5) concerns about cardiac monitors. The sessions were audiotaped, transcribed, and independently analyzed by two reviewers to identify core themes. Emblematic quotations were chosen to illustrate the final themes. Results Nine adult patients and three family members participated. Patients felt education was inadequate and had little knowledge of arrhythmias. Patients’/families’ concerns regarding cardiac monitors were related to adverse effects, the notification process, and cosmetic effects. Patients/families felt that nephrologists, not dialysis staff, would be the best source for education. Conclusions The preliminary data from this small study population suggest that patients/families are not well aware of the high risk of arrhythmia and sudden cardiac death in dialysis. Further investigation is required to gauge this awareness among patients/families and to assess their impressions of implantable cardiac monitors for arrhythmia detection and management.

scholarly journals A qualitative analysis of psychosocial needs and support impacts in families affected by young sudden cardiac death: The role of community and peer support

2020 ◽  
pp. 147451512092234 ◽  
Author(s):  
Edith Maria Steffen ◽  
Lada Timotijevic ◽  
Adrian Coyle
Keyword(s):  
Sudden Cardiac Death ◽  
Focus Groups ◽  
Peer Support ◽  
Thematic Analysis ◽  
Cardiac Death ◽  
Psychosocial Support ◽  
Family Members ◽  
Community Support ◽  
Sense Making ◽  
Support Needs

Background Young sudden cardiac death (YSCD), often occurring in previously healthy individuals, is a tragic event with devastating impact on affected families, who are at heightened risk of posttraumatic stress and prolonged grief and may themselves be at risk of YSCD. Previous research suggests that surviving family members’ psychosocial support needs are often unmet. Purpose This study sought to identify how YSCD-affected families experience dedicated community and peer support in light of their psychosocial support needs. Methods The study used a qualitative design, employing a thematic analysis of focus group and interview data. Three focus groups and five individual interviews were conducted with affected family members ( N = 19). The sample was drawn from a UK-based charity, Cardiac Risk in the Young. Audio-recordings of the focus groups and interviews were transcribed and subjected to thematic analysis. Results Three super-ordinate themes were identified: 1. YSCD community support as offering a place of safety, 2. YSCD community support as fostering sense-making, 3. YSCD community support as facilitating finding new meaning. Conclusions YSCD-affected families can benefit from access to dedicated community and peer support that offers a safe environment, provides affiliation, understanding and normalisation and enables sense-making and the rebuilding of a sense of self. Dedicated community support can facilitate meaningful re-engagement with life through helping prevent YSCD and through memorialisation and legacy-building to maintain a continuing bond with the deceased. Clinicians need to be aware of the need to incorporate available community and peer support into patient pathways.

scholarly journals P859 Can we connect intraventricular exercise induced gradients to sudden cardiac death?

2020 ◽  
Vol 21 (Supplement_1) ◽  
Author(s):  
C Cotrim ◽  
F Costa ◽  
D Severino ◽  
L Baquero ◽  
J Guardado
Keyword(s):  
Sudden Cardiac Death ◽  
Cardiac Death ◽  
Heart Diseases ◽  
Young Male ◽  
Exercise Stress ◽  
Male Athlete ◽  
First Case ◽  
History Of ◽  
Intense Training ◽  
Exercise Induced

Abstract Background Some publications, on exercise induced intraventricular gradients, admit the possibility they can be related to some cases of unexplained sudden cardiac death (SCD). Clinical case We present the case of a young male athlete (16 years) that after winning a triathlon competition has sudden cardiac death. No cardiovascular risk factors. No family history of SCD A previous episode of dizziness, accompanied by nausea and vomiting related to intense training happens 6 months before. In September 2018 about 30 minutes after winning a triathlon competition has SCD episode having been resuscitated on site by the competition physician having been defibrillated and transported to intensive care unit. After discharge, cardiac MRI, Coronary AngioTC, complete genetic study for heart diseases, flecainid test, transthoracic echocardiogram, stress echocardiogram with hyperventilation and ergometrine. All have normal results (Figure) During 24 hours Holter ECG isolated premature ventricular complexes were detected and during exercise stress echocardiography a significant intraventricular gradient without systolic anterior movement of mitral valve was detected (Figure). The athlete was disqualified for sports practice, refuses CDI implantation and started bisoprolol 2,5 mg daily. To the best of our knowledge this is the first case of association between SCD and exercise induced intraventricular gradient. This possible association should be studied in the future. Abstract P859 Figure. Intraventricular gradient in SCD athlete

scholarly journals A comprehensive work up of various ventricular tachy-arrhythmias in relation to the underling cardiac disorder / status

2017 ◽  
Vol 5 (10) ◽  
pp. 4292
Author(s):  
Tusharkanti Patra ◽  
Prashant Kumar ◽  
Somnath Mukherjee ◽  
Anurag Passi ◽  
S. K. Saidul Islam
Keyword(s):  
Heart Disease ◽  
Family History ◽  
Sudden Cardiac Death ◽  
Cardiac Death ◽  
Heart Diseases ◽  
Ventricular Tachyarrhythmia ◽  
Triple Vessel Disease ◽  
History Of ◽  
Ventricular Tachy ◽  
Work Up

Background: Main objective of the study is details work up of the patients of ventricular tachy-arrhythmias and to find out its association with any structural heart disease.Methods: This institution based observational study was conducted in patients of documented sustained VT (ventricular tachycardia) with consecutive 102 patients.Results: The mean age of the VT patients was 56.7 years and the number of male patients were 70 (69%). In our study, among 102 patients 45 patients were diabetic, 64 patients were hypertensive, 30 patients were current smoker, family history of heart disease was present in 25 patients and family history of SCD (sudden cardiac death) was present in 5 patients. Among the patients who presented with symptoms of ventricular tachy arrhythmia, 25 patients had EF (ejection fraction) above 40%, 36 had EF between 31 to 40% and only 2 had EF below 30%. CAG (coronary angiography) done in 98 patients and 16 had normal coronaries. 20, 16 and 46 patients had single, double and triple vessel disease respectively. 80 patients had coronary heart disease (78%), 20 patients among them had acute ischemic events and 60 had chronic ischemic disease. 12 patients didn’t have any structural heart disease.Conclusions: Ischemic heart disease, acute or chronic, is the most common causes of ventricular tachyarrhythmia. male sex, diabetes mellitus, hypertension, smoking, family history of heart diseases or sudden cardiac death being the risk factors of coronary artery disease are also predisposing factors of ventricular tachyarrhythmia.

scholarly journals Risk of cardiovascular disease in family members of young sudden cardiac death victims

2012 ◽  
Vol 34 (7) ◽  
pp. 503-511 ◽  
Author(s):  
M. F. Ranthe ◽  
B. G. Winkel ◽  
E. W. Andersen ◽  
B. Risgaard ◽  
J. Wohlfahrt ◽  
...  
Keyword(s):  
Cardiovascular Disease ◽  
Sudden Cardiac Death ◽  
Cardiac Death ◽  
Family Members

scholarly journals Electrocardiographic Changes in Athletes of Black Ethnicity

2018 ◽  
Vol 13 ◽  
Author(s):  
Dillan Ismail ◽  
Anders Eriksson ◽  
Stellan Mörner ◽  
Annika Rydberg
Keyword(s):  
Sudden Cardiac Death ◽  
Cardiac Death ◽  
Heart Diseases ◽  
Cardiac Events ◽  
St Segment Elevation ◽  
Positive Effects ◽  
African Heritage ◽  
St Segment ◽  
Increased Risk ◽  
Electrocardiographic Changes

AbstractIntensive participation in sport has positive physiological effects on the heart. The contractility of the heart improves, the ejection fraction increases and the muscle mass of the heart increases, thus leading to a greater cardiac output. Despite these positive effects, there is still an increased risk for acute cardiac events. The workload of the heart can be very high in some sports and may in some cases be the reason for sudden cardiac death. In these cases, there is often an underlying heart disease (cardiomyopathy) unknown before the actual event. Electrocardiographic examination (ECG) may reveal some of these diseases but although ECG examinations can be a useful tool to discover pathological conditions, there could be difficulties in interpreting different ECG patterns, especially in athletes. In some cases, athletes may exhibit ECG patterns that are similar to those in heart diseases such as cardiomyopathies (QRS-amplitudes, ST-segment elevation and T wave inversions in lateral leads).  This pattern is even more common in athletes of African origins. Furthermore, cardiomyopathies such as hypertrophic cardiomyopathy (HCM) are more common among athletes with African heritage than in white athletes. Thus correct interpretation of ECG is crucial for several reasons: to distinguish between benign physiological (‘athlete’s heart’) and pathological changes, to lower the risk of sudden cardiac death, and to save time and money by not undertaking further examination of the heart.

scholarly journals 683 Cor in memoria posterorum: role of familial screening in sudden death syndrome

2021 ◽  
Vol 23 (Supplement_G) ◽  
Author(s):  
Chiara Chiti ◽  
Vanda Parisi ◽  
Maddalena Graziosi ◽  
Elena Biagini
Keyword(s):  
Sudden Cardiac Death ◽  
Left Ventricle ◽  
Cardiac Death ◽  
Structural Damage ◽  
Family Members ◽  
Anterior Wall ◽  
Left Ventricular ◽  
Arrhythmogenic Cardiomyopathy ◽  
Therapeutic Implications

Abstract A 14-year-old boy suddenly died during a school lesson. His familial history was negative for sudden cardiac death and no comorbidities were reported. As part of Emilia Romagna regional network for sudden cardiac death, the heart was examined at our Cardiovascular Pathology Unit. The molecular autopsy revealed extensive lymphocytic macrophage left ventricle myocarditis (infero-lateral and anterior wall) in various evolutive stages. Genetic testing with next-generation sequencing was performed on DNA isolated from explanted heart samples (178 candidate genes for channelopathies and cardiomyopathies were analysed) and it showed a frameshift pathological mutation in the filamine C gene (FLNC c.8034delC p. Cys2679fsTer6) which induces protein premature termination. In order to screen family members, we evaluated the father, 53-year-old, asymptomatic and with an unremarkable cardiology history. The ECG showed sinus rhythm, HR 60 b.p.m., normal atrioventricular conduction, QRS fragmentation and negative T waves in the inferior leads. The echocardiogram revealed left ventricle mild dilation (79 mL/m2) with global hypokinesia (EF 45%), while right ventricle was normal for size and kinetics. A cardiac MRI confirmed left ventricular dilation and hypokinesia with diffuse LGE with circumferential mesocardial distribution mainly in the middle-baseline site, which reflected structural damage (fibrosis). The 24-h Holter ECG did not record arrhythmias. The genetic test was then performed and the same FLNC frameshift mutation was identified. We thus suspected familial arrhythmogenic cardiomyopathy involving left ventricle with pathological filamine C mutation and an ICD was recommended. Other family members had no pathological findings. Filamine C mutations are associated with many type of cardiomyopathy. A possible association between some mutated variants and certain subtypes of cardiomyopathy has been highlighted. In particular, the frameshift variant is associated with an increased arrhythmic risk, particularly when dilated forms are considered. Recent studies have identified a correlation with arrhythmogenic cardiomyopathy, although the role of these mutated variants has not yet been fully defined. This clinical case underlines the importance of multidisciplinary approach in cases of sudden cardiac death, consisting of autopsy, genetic and clinical evaluation, in order to identify any forms of familial cardiomyopathy and activate a systematic screening in family members with important prognostic and therapeutic implications. Data about our regional structural network for sudden cardiac death will also be shown.

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