{
    "abstract": "Adults with congenital heart disease (CHD) are growing in number and living longer with complex lesions; however, many are at risk of death in midlife. Conversations about advance care planning (ACP) in this population have been found to be infrequent and not part of regular outpatient care. The intent of this study was to explore readiness of patients with adult CHD (ACHD) to discuss ACP and assess the impact of interventions to support ACP conversations.\nWe conducted a prospective, randomized, single-centre trial of adults with moderate to severe CHD. Simply, the control group was asked if they were ready to discuss their wishes if they were to become seriously ill. The intervention group was provided 2 additional resources with the readiness question, the modified Lyon Family-Centered ACP survey and a patient-partner created ACHD-ACP video.\nA total of 111 responses (control [n\u00a0= 59] and intervention group [n\u00a0= 52]) were collected for analysis. Women represented 59.0% of the participants. The mean age was 39.6 years (standard deviation\u00a0= 14.8 years). No significant difference was found between the control and experimental groups' readiness (94.9% and 90.4%, respectively). Most participants (92.8%) responded positively towards initiating conversations related to end-of-life and ACP discussions.\nWe found that adults with CHD are ready to have ACP conversations as part of their outpatient care. Patient preferences and values should guide ACP conversations; further research is needed to determine whether the modified Lyon Family-Centered ACP survey and ACHD-ACP video are helpful adjuncts for ACP in outpatient clinics.\nLes adultes atteints de cardiopathie cong\u00e9nitale sont de plus en plus nombreux et vivent plus longtemps avec des l\u00e9sions complexes; cependant, nombre d\u2019entre eux pr\u00e9sentent un risque de d\u00e9c\u00e8s au mi-temps de la vie. Il a \u00e9t\u00e9 d\u00e9montr\u00e9 que les conversations sur la planification pr\u00e9alable de soins (PPS) sont rares au sein de cette population et qu\u2019elles ne font pas partie des soins ambulatoires habituels. Cette \u00e9tude avait pour but de d\u00e9terminer dans quelle mesure les adultes atteints de cardiopathie cong\u00e9nitale \u00e9taient dispos\u00e9s \u00e0 parler de la PPS et d\u2019\u00e9valuer l\u2019effet des interventions pour favoriser des conversations sur la PPS.\nNous avons men\u00e9 un essai monocentrique, prospectif et \u00e0 r\u00e9partition al\u00e9atoire aupr\u00e8s d\u2019adultes atteints de cardiopathie cong\u00e9nitale mod\u00e9r\u00e9e \u00e0 s\u00e9v\u00e8re. Nous avons tout simplement demand\u00e9 aux membres du groupe t\u00e9moin s\u2019ils \u00e9taient pr\u00eats \u00e0 parler de ce qu\u2019ils souhaiteraient s\u2019ils devenaient gravement malades. Le groupe d\u2019intervention a eu \u00e0 sa disposition deux ressources additionnelles portant sur la r\u00e9ceptivit\u00e9 des patients, le questionnaire Lyon Family-Centered ACP Survey (ML-ACP) modifi\u00e9 et une vid\u00e9o sur la PPS en pr\u00e9sence de cardiopathie cong\u00e9nitale cr\u00e9\u00e9e en partenariat avec les patients.\nAu total, 111 r\u00e9ponses (groupe t\u00e9moin [n\u00a0= 59] et groupe d\u2019intervention [n\u00a0= 52]) ont \u00e9t\u00e9 recueillies \u00e0 des fins d\u2019analyse. Les femmes repr\u00e9sentaient 59,0 % des participants. L\u2019\u00e2ge moyen \u00e9tait 39,6 ans (\u00e9cart-type\u00a0= 14,8 ans). Aucune diff\u00e9rence notable n\u2019a \u00e9t\u00e9 observ\u00e9e entre le groupe t\u00e9moin et le groupe d\u2019intervention (respectivement 94,9 % et 90,4 %) quant au fait d\u2019\u00eatre pr\u00eats \u00e0 tenir ces conversations. La plupart des participants (92,8 %) ont r\u00e9pondu positivement, se disant pr\u00eats \u00e0 amorcer des conversations sur la fin de la vie et la PPS.\nNous avons constat\u00e9 que les adultes atteints de cardiopathie cong\u00e9nitale sont pr\u00eats \u00e0 avoir des conversations sur la PPS dans le cadre des soins ambulatoires. Les conversations sur la PPS doivent \u00eatre guid\u00e9es par les pr\u00e9f\u00e9rences et les valeurs des patients, il faut d\u2019autres recherches pour d\u00e9terminer si le questionnaire ML-ACP et la vid\u00e9o sur la PPS en pr\u00e9sence de cardiopathie cong\u00e9nitale sont des ajouts utiles pour la PPS dans les cliniques externes.",
    "authors": [
        {
            "affiliation": "Department of Critical Care Medicine, Alberta Health Services, Calgary, Alberta, Canada.\nClinical Associate, Faculty of Nursing, University of Calgary, Calgary, Alberta, Canada.\nDepartment of Cardiac Sciences, Division of Cardiology, University of Calgary and Alberta Health Services, Calgary, Alberta, Canada.",
            "firstname": "Jessica D",
            "initials": "JD",
            "lastname": "Jenkins"
        },
        {
            "affiliation": "Libin Cardiovascular Institute, University of Calgary, Calgary, Alberta, Canada.",
            "firstname": "Kayla",
            "initials": "K",
            "lastname": "Poku"
        },
        {
            "affiliation": "Faculty of Kinesiology, University of Calgary, Calgary, Alberta, Canada.",
            "firstname": "Connor",
            "initials": "C",
            "lastname": "Hass"
        },
        {
            "affiliation": "Libin Cardiovascular Institute, University of Calgary, Calgary, Alberta, Canada.",
            "firstname": "Michelle A L",
            "initials": "MAL",
            "lastname": "Kotelko"
        },
        {
            "affiliation": "Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.",
            "firstname": "David",
            "initials": "D",
            "lastname": "Campbell"
        },
        {
            "affiliation": "Department of Cardiac Sciences, Division of Cardiology, University of Calgary and Alberta Health Services, Calgary, Alberta, Canada.\nLibin Cardiovascular Institute, University of Calgary, Calgary, Alberta, Canada.",
            "firstname": "Michelle",
            "initials": "M",
            "lastname": "Keir"
        }
    ],
    "conclusions": "Nous avons constat\u00e9 que les adultes atteints de cardiopathie cong\u00e9nitale sont pr\u00eats \u00e0 avoir des conversations sur la PPS dans le cadre des soins ambulatoires. Les conversations sur la PPS doivent \u00eatre guid\u00e9es par les pr\u00e9f\u00e9rences et les valeurs des patients, il faut d\u2019autres recherches pour d\u00e9terminer si le questionnaire ML-ACP et la vid\u00e9o sur la PPS en pr\u00e9sence de cardiopathie cong\u00e9nitale sont des ajouts utiles pour la PPS dans les cliniques externes.",
    "copyrights": "\u00a9 2024 The Authors.\n\u00a9 2024 The Authors.",
    "doi": "10.1016/j.cjcpc.2024.09.001",
    "journal": "CJC pediatric and congenital heart disease",
    "keywords": [],
    "methods": null,
    "publication_date": "2025-02-17",
    "pubmed_id": "39959628\n20207625\n24944314\n32795094\n32654582\n21697263\n11074209\n24521268\n19853711\n30230232\n26786543\n28457736\n32866444\n28096041\n31404639\n23279997\n26300673\n32862229\n30121240\n28705314\n32857151\n20818875\n37970526\n11300418\n23479062\n27940700\n22459306\n21094550\n33561491\n30575286\n32833706\n31354955\n33040248",
    "results": "A total of 111 responses (control [n\u00a0= 59] and intervention group [n\u00a0= 52]) were collected for analysis. Women represented 59.0% of the participants. The mean age was 39.6 years (standard deviation\u00a0= 14.8 years). No significant difference was found between the control and experimental groups' readiness (94.9% and 90.4%, respectively). Most participants (92.8%) responded positively towards initiating conversations related to end-of-life and ACP discussions.",
    "title": "Advance Care Planning for Adults With Moderate-to-Severe Congenital Heart Disease: Readiness Trial.",
    "xml": "<Element 'PubmedArticle' at 0x788502123d80>"
}