Emanuele Monda, Elena Biagini, Nico Blom, Fabrizio Drago, Ingrid Krapels, Alice Krebsová, Karel Koubsky, Diala Khraiche, Elisabete Martins, Marco Merlo, Michelle Michels, Katarzyna Mizia-Stec, Stellan Mörner, Maria Luisa Peña Peña, Ivo Planinc, Tomas Robyns, Annika Rydberg, Johan Saenen, Jose Fernando Rodríguez Palomares, Hassink Rutger, Georgia Sarquella Brugada, Esther Scheirlynck, Eric Schulze-Bahr, Jacob Tfelt-Hansen, Cordula M Wolf, Nynke Hofman, Ahmad S Amin, Arthur Wilde, Philippe Charron, Giuseppe Limongelli
{"title":"目前欧洲遗传性和罕见心肌病患者的过渡管理和多学科护理：欧洲罕见和低患病率复杂心脏疾病参考网络（ERN GUARD-HEART）的结果。","authors":"Emanuele Monda, Elena Biagini, Nico Blom, Fabrizio Drago, Ingrid Krapels, Alice Krebsová, Karel Koubsky, Diala Khraiche, Elisabete Martins, Marco Merlo, Michelle Michels, Katarzyna Mizia-Stec, Stellan Mörner, Maria Luisa Peña Peña, Ivo Planinc, Tomas Robyns, Annika Rydberg, Johan Saenen, Jose Fernando Rodríguez Palomares, Hassink Rutger, Georgia Sarquella Brugada, Esther Scheirlynck, Eric Schulze-Bahr, Jacob Tfelt-Hansen, Cordula M Wolf, Nynke Hofman, Ahmad S Amin, Arthur Wilde, Philippe Charron, Giuseppe Limongelli","doi":"10.1093/ehjqcco/qcaf055","DOIUrl":null,"url":null,"abstract":"<p><strong>Background and aims: </strong>Cardiomyopathies are a heterogeneous group of genetic disorders requiring specialised, multidisciplinary management to optimize patient outcomes. A critical aspect of care is the transition of paediatric patients to adult services, which varies significantly across healthcare systems.This study assessed current practices in care transition and multidisciplinary management of inherited and rare cardiomyopathies across specialised European centres within the European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart (ERN GUARD-Heart) network.</p><p><strong>Methods: </strong>A 21-question survey was distributed to healthcare providers within the network. A single participant (i.e., cardiologist with expertise in the diagnosis and management of inherited and rare cardiomyopathies) from each centre was approached. Responses from 26 centres across 12 European countries were analysed using descriptive statistics to evaluate institutional characteristics, transition protocols, and multidisciplinary team involvement.</p><p><strong>Results: </strong>While 81% of centres reported having a transition plan, only 42% implemented it for all patients, and 19% had no formal protocol. Multidisciplinary care was well-integrated, with regular team discussions, though key professionals such as psychologists and nurses were often absent. The lack of structured transition programs, inconsistent use of standardised protocols, and a shortage of specialists in cardiogenetics emerged as major unmet needs.</p><p><strong>Conclusions: </strong>Significant variability exists in the transition and multidisciplinary care of patients with inherited and rare cardiomyopathies. Standardised transition protocols, greater involvement of multiple healthcare professionals, and enhanced training in cardiogenetics are needed to ensure continuity of care and improve patient care across Europe.</p>","PeriodicalId":520616,"journal":{"name":"European heart journal. Quality of care & clinical outcomes","volume":" ","pages":""},"PeriodicalIF":0.0000,"publicationDate":"2025-07-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Current Management of Transition and Multidisciplinary Care of Patients with Inherited and Rare Cardiomyopathies in Europe: Results of the European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart (ERN GUARD-HEART).\",\"authors\":\"Emanuele Monda, Elena Biagini, Nico Blom, Fabrizio Drago, Ingrid Krapels, Alice Krebsová, Karel Koubsky, Diala Khraiche, Elisabete Martins, Marco Merlo, Michelle Michels, Katarzyna Mizia-Stec, Stellan Mörner, Maria Luisa Peña Peña, Ivo Planinc, Tomas Robyns, Annika Rydberg, Johan Saenen, Jose Fernando Rodríguez Palomares, Hassink Rutger, Georgia Sarquella Brugada, Esther Scheirlynck, Eric Schulze-Bahr, Jacob Tfelt-Hansen, Cordula M Wolf, Nynke Hofman, Ahmad S Amin, Arthur Wilde, Philippe Charron, Giuseppe Limongelli\",\"doi\":\"10.1093/ehjqcco/qcaf055\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background and aims: </strong>Cardiomyopathies are a heterogeneous group of genetic disorders requiring specialised, multidisciplinary management to optimize patient outcomes. A critical aspect of care is the transition of paediatric patients to adult services, which varies significantly across healthcare systems.This study assessed current practices in care transition and multidisciplinary management of inherited and rare cardiomyopathies across specialised European centres within the European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart (ERN GUARD-Heart) network.</p><p><strong>Methods: </strong>A 21-question survey was distributed to healthcare providers within the network. A single participant (i.e., cardiologist with expertise in the diagnosis and management of inherited and rare cardiomyopathies) from each centre was approached. Responses from 26 centres across 12 European countries were analysed using descriptive statistics to evaluate institutional characteristics, transition protocols, and multidisciplinary team involvement.</p><p><strong>Results: </strong>While 81% of centres reported having a transition plan, only 42% implemented it for all patients, and 19% had no formal protocol. Multidisciplinary care was well-integrated, with regular team discussions, though key professionals such as psychologists and nurses were often absent. The lack of structured transition programs, inconsistent use of standardised protocols, and a shortage of specialists in cardiogenetics emerged as major unmet needs.</p><p><strong>Conclusions: </strong>Significant variability exists in the transition and multidisciplinary care of patients with inherited and rare cardiomyopathies. Standardised transition protocols, greater involvement of multiple healthcare professionals, and enhanced training in cardiogenetics are needed to ensure continuity of care and improve patient care across Europe.</p>\",\"PeriodicalId\":520616,\"journal\":{\"name\":\"European heart journal. Quality of care & clinical outcomes\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2025-07-11\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"European heart journal. Quality of care & clinical outcomes\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1093/ehjqcco/qcaf055\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"European heart journal. Quality of care & clinical outcomes","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1093/ehjqcco/qcaf055","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
Current Management of Transition and Multidisciplinary Care of Patients with Inherited and Rare Cardiomyopathies in Europe: Results of the European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart (ERN GUARD-HEART).
Background and aims: Cardiomyopathies are a heterogeneous group of genetic disorders requiring specialised, multidisciplinary management to optimize patient outcomes. A critical aspect of care is the transition of paediatric patients to adult services, which varies significantly across healthcare systems.This study assessed current practices in care transition and multidisciplinary management of inherited and rare cardiomyopathies across specialised European centres within the European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart (ERN GUARD-Heart) network.
Methods: A 21-question survey was distributed to healthcare providers within the network. A single participant (i.e., cardiologist with expertise in the diagnosis and management of inherited and rare cardiomyopathies) from each centre was approached. Responses from 26 centres across 12 European countries were analysed using descriptive statistics to evaluate institutional characteristics, transition protocols, and multidisciplinary team involvement.
Results: While 81% of centres reported having a transition plan, only 42% implemented it for all patients, and 19% had no formal protocol. Multidisciplinary care was well-integrated, with regular team discussions, though key professionals such as psychologists and nurses were often absent. The lack of structured transition programs, inconsistent use of standardised protocols, and a shortage of specialists in cardiogenetics emerged as major unmet needs.
Conclusions: Significant variability exists in the transition and multidisciplinary care of patients with inherited and rare cardiomyopathies. Standardised transition protocols, greater involvement of multiple healthcare professionals, and enhanced training in cardiogenetics are needed to ensure continuity of care and improve patient care across Europe.
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