Psychological Issues in Managing Families with Inherited Cardiovascular Diseases

Ingles, Jodie

doi:10.1101/cshperspect.a036558

Cited by 17 publications

(12 citation statements)

References 54 publications

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“…The role of the cardiac genetic counselor includes taking a detailed family history, investigating and confirming details such as postmortem reports, providing education and awareness, assisting in coordinating family clinical screening, and providing psychosocial support. 74,[92][93][94][95] Throughout the process of genetic testing, genetic counselors provide important preand post-test genetic counseling, assist with interpretation of the results, help communicate this information to relatives, and assist with cascade genetic testing 75,93,96,97 (Table 4).…”

Section: Recommendation-specific Supportive Textmentioning

confidence: 99%

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2020 APHRS/HRS expert consensus statement on the investigation of decedents with sudden unexplained death and patients with sudden cardiac arrest, and of their families

et al. 2021

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This international multidisciplinary document intends to provide clinicians with evidence-based practical patient-centered recommendations for evaluating patients and decedents with (aborted) sudden cardiac arrest and their families. The document includes a framework for the investigation of the family allowing steps to be taken, should an inherited condition be found, to minimize further events in affected relatives. Integral to the process is counseling of the patients and families, not only because of the emotionally charged subject, but because finding (or not finding) the cause of the arrest may influence management of family members. The formation of multidisciplinary teams is essential to provide a complete service to the patients and their families, and the varied expertise of the writing committee was formulated to reflect this need. The document sections were Developed in partnership with and endorsed by the Asia Pacific Heart Rhythm Society (APHRS) and the Heart Rhythm Society (HRS). Developed in collaboration with and endorsed by the Association for European Cardiovascular Pathology (AECVP), the European Society of Human Genetics (ESHG), the Latin American Heart Rhythm Society (LAHRS), the National Society of Genetic Counselors (NSGC), and the Pediatric and Congenital Electrophysiology Society (PACES). Developed in collaboration with the European Heart Rhythm Association (EHRA). For copies of this document, please contact the Elsevier Inc. Reprint Department

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Section: Recommendation-specific Supportive Textmentioning

confidence: 99%

“…In the context of genetic testing, pre-and post-test genetic counseling must be performed. 75,95,96,99 In cases where there is uncertainty in the findings, such as a variant of uncertain significance or a variant reclassification, this is of particular importance. 100,101 Recommendations for counseling families affected by SUD and SCA…”

Section: Synopsismentioning

confidence: 99%

2020 APHRS/HRS expert consensus statement on the investigation of decedents with sudden unexplained death and patients with sudden cardiac arrest, and of their families

et al. 2021

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“…To our knowledge this is the first psychosocial study after PGT in hereditary heart diseases, that simultaneously assessed the reasons for undergoing PGT, anxiety, distress and the social impact of the disclosure of genetic test results. This study was conducted in the largest population analyzed so far in cardiomyopathies and primary arrhythmic disorders (see Supplementary Table S6) [17,[23][24][25][26][27] and is the only study to focus specifically on asymptomatic relatives without phenotypic expression (other studies have comprised a mixed population including a majority of patients with already manifest cardiac disease). It is one of the few longitudinal studies combining pre-test and post-test evaluation and is one of the few that examine predictors of psychosocial impact (only studied by Christiaans et al) [24].…”

Section: Discussionmentioning

confidence: 99%

Psycho-social impact of predictive genetic testing in hereditary heart diseases (PREDICT Study)

Bordet

Brice

Maupain

et al. 2020

Archives of Cardiovascular Diseases Supplements

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HAL is a multidisciplinary open access archive for the deposit and dissemination of scientific research documents, whether they are published or not. The documents may come from teaching and research institutions in France or abroad, or from public or private research centers. L'archive ouverte pluridisciplinaire HAL, est destinée au dépôt et à la diffusion de documents scientifiques de niveau recherche, publiés ou non, émanant des établissements d'enseignement et de recherche français ou étrangers, des laboratoires publics ou privés.

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Section: Introductionmentioning

confidence: 99%

“…Scholars report the need to debate several issues related to physical and psychological consequences within consultations [ 18 ]. For instance, doctor-patient communication in genetic cardiomyopathies needs to focus on both individual and family implications involved in the living with and managing a chronic disease, and the importance of dedicating part of the consultation to subjective and intrapsychic illness experience has been widely remarked upon [ 19 ]. Due to these characteristics, the care of cardiomyopathies requires a multidisciplinary approach, involving not only nursing and medical care, but also genetic and psychological counselling, situating the healthcare team-patient encounter in a complex environment involving several professionals.…”

Section: Introductionmentioning

confidence: 99%

Doctor-patient care relationship in genetic cardiomyopathies: An exploratory study on clinical consultations

et al. 2020

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Background The present study aims to explore the setting of consultation and communication between physicians and patients affected by genetic cardiomyopathies, investigating how the two parts of the therapeutic relationship participate and share information. Methods and results 45 adult patients affected by various cardiomyopathies took part in a prospective case study while attending consultations at a cardiologic outpatient clinic constituting an Italian referral centre for cardiomyopathies. A researcher observed the consultations, which were audiorecorded and transcribed. Transcripts were coded and an analysis of setting, type of communication implemented and participation of doctors and patients in terms of word-count and type of questions/answers was carried out. Overall word-count was significantly higher for physicians than for patients (t(44) = 9,506; p<0.001). Doctors were prone to ask closed questions (t(44) =-11,90; p<0.001) while patients preferred open answers (t(44) = 5.58; p<0.001), enriched with subjective issues related to their illness experience. Partial correlation highlights a significant positive relation between doctors' closed question and patients' open answers (r = .838; p<0.001). Conclusions Findings emphasize patients' need for adequate time and space to share their subjective illness experience with the physician, within an approach informed by the insights and recommendations of Narrative Medicine. These findings are instrumental to improving the specific clinical setting for individuals with genetic cardiomyopathies.

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Psychological Issues in Managing Families with Inherited Cardiovascular Diseases

Cited by 17 publications

References 54 publications

2020 APHRS/HRS expert consensus statement on the investigation of decedents with sudden unexplained death and patients with sudden cardiac arrest, and of their families

2020 APHRS/HRS expert consensus statement on the investigation of decedents with sudden unexplained death and patients with sudden cardiac arrest, and of their families

Psycho-social impact of predictive genetic testing in hereditary heart diseases (PREDICT Study)

Doctor-patient care relationship in genetic cardiomyopathies: An exploratory study on clinical consultations

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