TY - JOUR A1 - Rüther, Ferenc Darius A1 - Sebode, Marcial A1 - Lohse, Ansgar W. A1 - Wernicke, Sarah A1 - Böttinger, Erwin A1 - Casar, Christian A1 - Braun, Felix A1 - Schramm, Christoph T1 - Mobile app requirements for patients with rare liver diseases BT - a single center survey for the ERN RARE-LIVER JF - Clinics and research in hepatology and gastroenterology N2 - Background: More patient data are needed to improve research on rare liver diseases. Mobile health apps enable an exhaustive data collection. Therefore, the European Reference Network on Hepatological diseases (ERN RARE-LIVER) intends to implement an app for patients with rare liver diseases communicating with a patient registry, but little is known about which features patients and their healthcare providers regard as being useful. Aims: This study aimed to investigate how an app for rare liver diseases would be accepted, and to find out which features are considered useful. Methods: An anonymous survey was conducted on adult patients with rare liver diseases at a single academic, tertiary care outpatient-service. Additionally, medical experts of the ERN working group on autoimmune hepatitis were invited to participate in an online survey. Results: In total, the responses from 100 patients with autoimmune (n = 90) or other rare (n = 10) liver diseases and 32 experts were analyzed. Patients were convinced to use a disease specific app (80%) and expected some benefit to their health (78%) but responses differed signifi-cantly between younger and older patients (93% vs. 62%, p < 0.001; 88% vs. 64%, p < 0.01). Comparing patients' and experts' feedback, patients more often expected a simplified healthcare pathway (e.g. 89% vs. 59% (p < 0.001) wanted access to one's own medical records), while healthcare providers saw the benefit mainly in improving compliance and treatment outcome (e.g. 93% vs. 31% (p < 0.001) and 70% vs. 21% (p < 0.001) expected the app to reduce mistakes in taking medication and improve quality of life, respectively). KW - Primary sclerosing cholangitis KW - Primary biliary cholangitis KW - Autoimmune KW - hepatitis KW - European reference networks KW - Mobile applications KW - Patient KW - reported out-come measures Y1 - 2021 U6 - https://doi.org/10.1016/j.clinre.2021.101760 SN - 2210-7401 SN - 2210-741X VL - 45 IS - 6 PB - Elsevier Masson CY - Amsterdam ER - TY - THES A1 - Le Bonhomme, Fanny T1 - Psychiatrie et société en République Démocratique Allemande T1 - Psychiatrie und Gesellschaft in der Deutschen Demokratischen Republik BT - histoires de patients de la clinique psychiatrique und neurologique de la Charité (Berlin-Est, 1960-1968) BT - Geschichten von Patienten der Psychiatrischen und Nervenklinik der Charité (Ost-Berlin, 1960-1968) N2 - The patients of the Charité Psychiatry and Neurology clinic (East-Berlin, GDR) during the 1960s are at the center of this study. While taking into account the interpretation provided by the medical discourse, this research aims at reconstructing the experiences and the trajectories of these individuals by inscribing them in the context of the socialist society. Relying on patients' records – these records being the main source of this study – the goal of this research is to reach a better understanding of underlying tensions in the socialist society in relation to the political and ideological context. As these sources show, when they talk to the therapist, patients can speak according to rules which differ from the rules implemented in the socialist society. Because they may contain traces of speeches that would usually be silenced as a result of censorship or self-censorship, or of the unspeakable, shameful or delirious nature of this speech, the patients' records prove to be a valuable source for the historian. From marital tensions caused by ideological disagreements to the inner conflicts of an “ardent marxist”, from the pain triggered by the exclusion from the party to the pain caused by the construction of the Berlin Wall, from the “reuniting delirium” to the delusions according to which the West appears as a threat, the individual and singular experiences of the patients allow to reconstruct, through a microhistorical approach, certain tensions inherent to the working of the socialist society. N2 - Au centre de cette étude se trouvent les patients de la clinique psychiatrique et neurologique de la Charité (Berlin-Est, RDA), durant la période des années 1960. Tout en prenant en compte l'interprétation qui en est faite par le discours médical, ce travail vise à reconstituer les expériences et les trajectoires de ces individus, en les inscrivant dans le contexte de la société socialiste. À partir des dossiers de patients – qui constituent le principal matériau archivistique de cette étude –, il s'agit de saisir certaines des tensions qui traversent la société est-allemande, en relation avec le contexte politique et idéologique. Comme en attestent ces sources, dans le cadre de l'échange thérapeutique, les patients peuvent prendre la parole selon des règles qui diffèrent de celles habituellement en vigueur au sein de la société socialiste. Parce qu'ils peuvent contenir les traces d'une parole ordinairement mise sous silence, du fait de la censure ou de l'auto-censure, de son caractère indicible, inavouable ou délirant, les dossiers de patients apparaissent comme une source précieuse pour l'historien. Des tensions conjugales provoquées par des dissensions idéologiques aux conflits intérieurs d'une « fervente marxiste », de la douleur suscitée par la radiation du parti à celle née de la construction du Mur, des « délires réunificateurs » à ceux faisant de l'Ouest une source de menaces, les expériences individuelles et singulières des patients permettent de reconstituer, selon une approche micro- historique, certaines tensions inhérentes au fonctionnement de la société socialiste. KW - Psychiatrie KW - Deutsche Demokratische Republik KW - Kommunismus KW - Patient KW - Kalter Krieg KW - psychiatrie KW - République Démocratique Allemande KW - communisme KW - patient KW - Guerre froide KW - psychiatry KW - German Democratic Republic KW - communism KW - patient KW - Cold War Y1 - 2015 U6 - http://nbn-resolving.de/urn/resolver.pl?urn:nbn:de:kobv:517-opus4-407164 ER -