scholarly journals A Needs Analysis of Parents Following Sudden Cardiac Death in the Young

2019 ◽  
Author(s):  
Kristie McDonald ◽  
Louise Sharpe ◽  
Laura Yeates ◽  
Christopher Semsarian ◽  
Jodie Ingles
Keyword(s):  
Sudden Cardiac Death ◽  
Cardiac Death ◽  
Medical Information ◽  
Psychosocial Support ◽  
Family Members ◽  
Unmet Need ◽  
Significant Risk ◽  
Psychological Support ◽  
Needs Analysis ◽  
Support Needs

ABSTRACTThe sudden cardiac death (SCD) of a young person is a devastating event for any parent. Inherited heart disease is often either identified or assumed to be the cause. Few studies have explored the psychosocial impact to the surviving at-risk family members. We sought to investigate the needs of parents who have experienced the SCD of their child (≤45 years). A quantitative needs analysis questionnaire was developed based on semi-structured interviews, including one focus group, and a review of relevant literature. There were 38 parents who completed a cross-sectional quantitative survey. Parents’ perceived needs for information and support spanned medical, psychosocial, spiritual and financial domains. Medical information and support needs were identified as the most important domains, followed by psychosocial, spiritual and financial information and support needs. Importantly, psychosocial information and support needs were reported as the most unmet need, endorsed by 54% of parents. Medical information and support needs were reported as unmet by almost one third of parents. The two most endorsed needs were “To have the option of whether or not you would pursue genetic testing for yourself or family members” and “To understand what happened”. This work demonstrates for the first time, the multifactorial needs of parents after SCD in the young. With the greatest unmet need reported as psychosocial needs, there is clear necessity to find ways of integrating psychological support in to the care of families after SCD in the young.KEY QUESTIONSWhat is already known about this subject?There is currently very little known about the needs of families following a sudden cardiac death due to inherited heart diseases. We know there is significant risk of poor psychological outcomes including posttraumatic stress and prolonged grief, even years after the death, however this is one of the first studies to formally evaluate the needs of parents during this time.What does this study add?We show that medical information and support needs are ranked very highly, but psychosocial support needs are the most unmet. Our findings provide a platform for developing an approach to delivering psychosocial support interventions in this population.How might this impact on clinical practice?Currently clinical and research efforts in this setting focus on clinical and genetic aspects of care. Here we show the critical need to also focus on the psychological care needs in this population. These data will help to guide services in integrating psychological support in to their multidisciplinary clinic models.

scholarly journals Needs analysis of parents following sudden cardiac death in the young

Open Heart ◽  
2020 ◽  
Vol 7 (2) ◽  
pp. e001120 ◽  
Author(s):  
Kristie McDonald ◽  
Louise Sharpe ◽  
Laura Yeates ◽  
Christopher Semsarian ◽  
Jodie Ingles
Keyword(s):  
Sudden Cardiac Death ◽  
Cardiac Death ◽  
Information Needs ◽  
Medical Information ◽  
Family Members ◽  
Unmet Need ◽  
Needs Analysis ◽  
Survey Study ◽  
Support Needs ◽  
Medical Needs

ObjectiveThe sudden cardiac death (SCD) of a young person is a devastating event for any parent. Inherited heart disease is often either identified or assumed to be the cause. Few studies have explored the psychosocial impact to the surviving at-risk family members. We sought to investigate the needs of parents who have experienced the SCD of their child (≤45 years).MethodsA quantitative needs analysis questionnaire was developed based on semistructured interviews, including one focus group and a review of relevant literature. Eligible participants were invited to participate in this cross-sectional survey study.ResultsThere were 38 parents who completed a quantitative survey. Parents’ perceived needs for information and support spanned medical, psychosocial, spiritual and financial domains. Of the support and information needs assessed, medical needs were identified as the most important domain, followed by psychosocial, spiritual and financial. Importantly, psychosocial information and support needs were reported as the most unmet need, endorsed by 54% of parents. Medical information and support needs were reported as unmet by almost one third of parents. The two most endorsed needs were ‘To have the option of whether or not you would pursue genetic testing for yourself or family members’ and ‘To understand what happened’.ConclusionsThis work demonstrates for the first time, the multifactorial needs of parents after SCD in the young. With the greatest unmet need reported as psychosocial needs, there is clear necessity to find ways of integrating psychological support in to the care of families after SCD in the young.

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.

Exploring perceptions of psychological services in a children's hospice in the United Kingdom

2012 ◽  
Vol 11 (5) ◽  
pp. 373-382 ◽  
Author(s):  
Jo Wray ◽  
Bruce Lindsay ◽  
Kenda Crozier ◽  
Lauren Andrews ◽  
Janet Leeson
Keyword(s):  
Focus Groups ◽  
Psychosocial Support ◽  
Family Members ◽  
Unmet Need ◽  
Essential Element ◽  
Psychological Support ◽  
Psychological Services ◽  
Individual Interviews ◽  
Telephone Interviews ◽  
Current Psychological

AbstractBackground:The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers offer psychosocial support to all family members at all times during the child's and family's journey. However, the effectiveness and appropriateness of current psychosocial provision is unclear, as is the requirement for any additional psychological services.Objective:The purpose of this study was to elicit perceptions about current psychological support within the hospice from a group of stakeholders (parents, hospice staff, and external professionals).Method:Forty-five parents participated in family focus groups, telephone interviews, individual interviews in their home, or a web-based survey. Ninety-five hospice staff (including nurses, carers, play specialists, therapists, and family support practitioners) and 28 external staff (including physicians, nurses, and commissioning managers) were seen using a mixture of focus group and individual meetings. Focus groups and meetings were held at the hospice building or at an external venue. Interviews were recorded and transcribed verbatim and analyzed using thematic coding.Results:Two main themes addressing perceptions of current psychological provision emerged: “understanding psychological support” and “unmet psychological need.” Subthemes linked to support included choice, staff roles and labels, communication, and flexibility, whereas the themes within unmet need had a stronger focus on people and problems.Significance of results:Understanding different user perspectives is an important first step in enhancing current psychological provision; operationalizing the findings will be challenging.

scholarly journals Radiomics Analysis Derived From LGE-MRI Predict Sudden Cardiac Death in Participants With Hypertrophic Cardiomyopathy

2021 ◽  
Vol 8 ◽  
Author(s):  
Jie Wang ◽  
Laura Bravo ◽  
Jinquan Zhang ◽  
Wen Liu ◽  
Ke Wan ◽  
...  
Keyword(s):  
Late Gadolinium Enhancement ◽  
Hypertrophic Cardiomyopathy ◽  
Sudden Cardiac Death ◽  
Cardiac Death ◽  
Prognostic Value ◽  
Significant Risk ◽  
Local Binary Patterns ◽  
Gadolinium Enhancement ◽  
Cox Analysis ◽  
Risk Predictor

Objectives: To identify significant radiomics features derived from late gadolinium enhancement (LGE) images in participants with hypertrophic cardiomyopathy (HCM) and assess their prognostic value in predicting sudden cardiac death (SCD) endpoint.Method: The 157 radiomic features of 379 sequential participants with HCM who underwent cardiovascular magnetic resonance imaging (MRI) were extracted. CoxNet (Least Absolute Shrinkage and Selection Operator (LASSO) and Elastic Net) and Random Forest models were applied to optimize feature selection for the SCD risk prediction and cross-validation was performed.Results: During a median follow-up of 29 months (interquartile range, 20–42 months), 27 participants with HCM experienced SCD events. Cox analysis revealed that two selected features, local binary patterns (LBP) (19) (hazard ratio (HR), 1.028, 95% CI: 1.032–1.134; P = 0.001) and Moment (1) (HR, 1.212, 95%CI: 1.032–1.423; P = 0.02) provided significant prognostic value to predict the SCD endpoints after adjustment for the clinical risk predictors and late gadolinium enhancement. Furthermore, the univariately significant risk predictor was improved by the addition of the selected radiomics features, LBP (19) and Moment (1), to predict SCD events (P < 0.05).Conclusion: The radiomics features of LBP (19) and Moment (1) extracted from LGE images, reflecting scar heterogeneity, have independent prognostic value in identifying high SCD risk patients with HCM.

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 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 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.

scholarly journals A new inherited syndrome causing sudden cardiac death with specific ECG changes and idiopathic left ventricular hypertrophy

EP Europace ◽  
2021 ◽  
Vol 23 (Supplement_3) ◽  
Author(s):  
P Swojanowsky ◽  
H Von Korn ◽  
C Basso ◽  
K Pilichou ◽  
V Stefan ◽  
...  
Keyword(s):  
Sudden Cardiac Death ◽  
Left Ventricular Hypertrophy ◽  
Cardiac Death ◽  
Ventricular Hypertrophy ◽  
Family Members ◽  
Index Patient ◽  
Left Ventricular ◽  
Sequencing Analysis ◽  
Ecg Changes ◽  
Paternal Line

Abstract Funding Acknowledgements Type of funding sources: None. Introduction  Sudden cardiac death (SCD) is a serious threat. In individuals under the age of 35 years sudden arrhythmic death is the most frequent cause. In younger persons, genetically determined cardiac diseases (e.g., cardiomyopathies, ion-channel diseases) account for an important proportion of these cases. Purpose We discovered a unusual combination of ECG changes and left ventricular hypertrophy that lead to a cumulation of sudden cardiac death in a single family. We therefore did a scientific work-up of this finding. Methods We investigated the case of a 23 year-old male with SCD, specific ECG changes and left ventricular hypertrophy (Figure 1). Family history was significant for SCD in the paternal line. A precise analysis was performed by an international multidisciplinary expert panel including autopsy of the index patient’s heart, molecular autopsy, whole exome sequencing, analysis of the pedigree and examination of available family members (Figure 2). Results  Three cases of SCD were  reported in paternal relatives. The index patient exhibited specific ECG changes (ST-depression), which were also found in five paternal relatives and the brother of the index Patient (Figure 3). Post-mortem analysis of the heart yielded mild idiopathic concentric hypertrophy without myocardial disarray.  The genetic analysis of the index patient showed two nucleotide variations in two different genes (ANK2: c.11791G > A , MYO18B: c.3761G > A), which were also expressed in five relatives. Two family members had showed all indicators of the inherited syndrome including specific ECG changes, genetic changes and left ventricular hypertrophy. Conclusions We described a distinct inheritable syndrome causing SCD, characterized by specific ECG changes, idiopathic left ventricular hypertrophy and mutations of ANK2 and MYO18. As far as we know this is the first description of this syndrom. We hypothesize that if all features (ECG-changes, described genetic mutations, left ventricular hypertrophy) are positive, the risk for SCD may be considerably increased. Abstract Figure. ECG of index patient and pedigree

scholarly journals Genetic Arrhythmia Center: Caring for Patients and Families at Risk for Sudden Cardiac Death and Advancing the Understanding of Rare Cardiomyopathies and Channelopathies

2018 ◽  
Vol 2 (2) ◽  
pp. 26-30
Author(s):  
Miranda S. Kunz ◽  
Sajya M. Singh ◽  
Susan A. Casey ◽  
Katelyn M. Storey ◽  
William T. Katsiyiannis ◽  
...  
Keyword(s):  
Sudden Cardiac Death ◽  
Cardiac Death ◽  
Arrhythmogenic Right Ventricular Cardiomyopathy ◽  
Clinical Care ◽  
Family Members ◽  
Sudden Cardiac Arrest ◽  
Health Impact ◽  
Left Ventricular ◽  
Cardiac Condition ◽  
Significant Public Health

Although rare in the general population, genetic arrhythmia syndromes have a significant public health impact due to their contribution to the incidence of sudden cardiac death, particularly in children and young adults. When sudden cardiac death occurs in the absence of ischemic heart disease, a genetic cardiac condition may be suspected and clinical and genetic screening of family members is recommended. The Genetic Arrhythmia Center at the Minneapolis Heart Institute collaborates with local partners in the Sudden Cardiac Arrest network to connect patients and their family members with interdisciplinary care for diagnosis and treatment of these conditions. The most common conditions seen in the Genetic Arrhythmia Center include arrhythmogenic right ventricular cardiomyopathy, left ventricular noncompaction, long QT syndrome, and Brugada syndrome. In addition to providing clinical care and genetic testing and counseling services, the Genetic Arrhythmia Center is working to advance the scientific understanding of the clinical presentation and natural history of these rare conditions.

scholarly journals Preventing a Catastrophe: Increasing Awareness of Loeys-Dietz Syndrome

2019 ◽  
Vol 46 (1) ◽  
pp. 41-43
Author(s):  
Bradley S. Kane ◽  
Kamran Shamsa
Keyword(s):  
Sudden Cardiac Death ◽  
Natural History ◽  
Aortic Dissection ◽  
Crucial Role ◽  
Cardiac Death ◽  
Genetic Disorder ◽  
Family Members ◽  
Aortic Aneurysms ◽  
Physician Awareness ◽  
History Of

Loeys-Dietz syndrome is a genetic disorder that predisposes patients to aortic aneurysms. If left untreated, the natural history of the associated aortopathy often culminates in fatal aortic dissection. We describe the case of a 21-year-old man who was diagnosed with Loeys-Dietz syndrome after 2 family members died of aortic dissection. This case highlights the importance of increased physician awareness of this syndrome, which can play a crucial role in preventing premature sudden cardiac death caused by aortic catastrophe.

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