{
    "abstract": "Advances in knowledge about late effects of childhood cancer treatments have led to implement long-term follow-up care. This raises the question of the ethical issues involved in providing information to survivors, and in proposals for long-term follow-up consultations.\nWe conducted a two-part qualitative study: (1) A semi-directive interview survey to explore survivors' experiences of medical proposals for follow-up consultations; (2) The creation of a multidisciplinary ethical reflection group aimed at identifying the ethical issues associated with the systematization of follow-up care.\nThe study identified five key issues related to medical requests and the implementation of follow-up care: (1) The needs and expectations of former patients regarding information; (2) The temporality of after-cancer; (3) The ambivalence of categorizations in light of the diversity of post-cancer experiences; (4) The role of various professionals and the responsibility for follow-up; (5) The plurality of needs and proposed approaches.\nIn light of these issues, five areas of concern emerge: (1) Provide information about a risk in life after the disease? (2) When should follow-up be proposed? (3) The category of \"former patients\": relevant or problematic? (4) Who can or should assume the role and responsibility for follow-up? (5) The diversity of follow-up approaches: balancing standardization with reliance on informal networks.",
    "authors": [
        {
            "affiliation": "Laboratoire S2HEP UR 4148, universit\u00e9 Claude Bernard Lyon 1, 43 bd du 11 novembre 1918, 69100 Villeurbanne, France.",
            "firstname": "Agathe",
            "initials": "A",
            "lastname": "Camus"
        },
        {
            "affiliation": "ENS de Lyon, laboratoire Triangle UMR 5206, Site Descartes, 17, parvis Ren\u00e9-Descartes, 69007 Lyon, France. Electronic address: julie.henry@ens-lyon.fr.",
            "firstname": "Julie",
            "initials": "J",
            "lastname": "Henry"
        },
        {
            "affiliation": "Service d'h\u00e9matologie oncologie p\u00e9diatrique, Inserm, SAINBIOSE U1059, Mines Saint-\u00c9tienne, CHU de Saint-\u00c9tienne, universit\u00e9 Jean Monnet Saint-\u00c9tienne, 42023 Saint-\u00c9tienne, France.",
            "firstname": "Claire",
            "initials": "C",
            "lastname": "Berger"
        },
        {
            "affiliation": "IHOPe, oncologie p\u00e9diatrique, Lyon, France; DAJAC, CLB, Lyon, France; D\u00e9partement SHS, CLB, Lyon, France; RESHAPE Inserm U1290, Lyon, France.",
            "firstname": "Amandine",
            "initials": "A",
            "lastname": "Bertrand"
        },
        {
            "affiliation": "\u00c9quipe CALIPSO Labellis\u00e9e Ligue 2023, Inserm, IRD, ISSPAM, sciences \u00e9conomiques & sociales de la sant\u00e9 & traitement de l'information m\u00e9dicale (SESSTIM), facult\u00e9 des sciences m\u00e9dicales et param\u00e9dicales, universit\u00e9 Aix-Marseille, 27, boulevard Jean-Moulin, 13385 Marseille cedex 5, France.",
            "firstname": "Agn\u00e8s",
            "initials": "A",
            "lastname": "Dumas"
        },
        {
            "affiliation": "Sury-le-Comtal, France.",
            "firstname": "Marine",
            "initials": "M",
            "lastname": "Da Silva S\u00e9"
        },
        {
            "affiliation": "Association Les Aguerris, 52, rue Pernety, 75014 Paris, France.",
            "firstname": "Sabine",
            "initials": "S",
            "lastname": "Heinrich"
        },
        {
            "affiliation": "IHOP, 1, place Joseph-Renaut, 69008 Lyon, France.",
            "firstname": "Tanguy",
            "initials": "T",
            "lastname": "Leprince"
        },
        {
            "affiliation": "Service d'h\u00e9matologie, immunologie et oncologie p\u00e9diatrique, h\u00f4pital de la Timone, Aix-Marseille universit\u00e9, Marseille, France.",
            "firstname": "G\u00e9rard",
            "initials": "G",
            "lastname": "Michel"
        },
        {
            "affiliation": "Centre L\u00e9on-B\u00e9rard, IHOP, 1, place Joseph-Renaut, 69008 Lyon, France.",
            "firstname": "Christelle",
            "initials": "C",
            "lastname": "Riberon"
        },
        {
            "affiliation": "Service d'immunologie h\u00e9matologie oncologie p\u00e9diatrique, CHU d'Angers, Angers, France; Service d'immunologie h\u00e9matologie oncologie p\u00e9diatrique, CHU de Caen, Caen, France; Inserm U 1018, \u00e9pid\u00e9miologie des radiations, Gustave-Roussy, Villejuif, France.",
            "firstname": "Charlotte",
            "initials": "C",
            "lastname": "Demoor-Goldschmidt"
        }
    ],
    "conclusions": null,
    "copyrights": "Copyright \u00a9 2025 Soci\u00e9t\u00e9 Fran\u00e7aise du Cancer. Published by Elsevier Masson SAS. All rights reserved.",
    "doi": "10.1016/j.bulcan.2024.12.018",
    "journal": "Bulletin du cancer",
    "keywords": [
        "Apr\u00e8s-cancer p\u00e9diatrique",
        "Childhood cancer survivorship",
        "Consultation proposals",
        "Enjeux \u00e9thiques",
        "Ethical issues",
        "Long-term effects",
        "Long-term follow-up care",
        "Sollicitations m\u00e9dicales",
        "Suivi \u00e0 long terme",
        "S\u00e9quelles \u00e0 long terme"
    ],
    "methods": "We conducted a two-part qualitative study: (1) A semi-directive interview survey to explore survivors' experiences of medical proposals for follow-up consultations; (2) The creation of a multidisciplinary ethical reflection group aimed at identifying the ethical issues associated with the systematization of follow-up care.",
    "publication_date": "2025-03-01",
    "pubmed_id": "40021389",
    "results": "The study identified five key issues related to medical requests and the implementation of follow-up care: (1) The needs and expectations of former patients regarding information; (2) The temporality of after-cancer; (3) The ambivalence of categorizations in light of the diversity of post-cancer experiences; (4) The role of various professionals and the responsibility for follow-up; (5) The plurality of needs and proposed approaches.",
    "title": "[Ethical issues in long-term follow-up of pediatric cancers].",
    "xml": "<Element 'PubmedArticle' at 0x788502f53560>"
}