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1. Parents' ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement

Author

Luc J. I. Zimmermann, Anna-Veera Seppänen, Jennifer Zeitlin, Elizabeth S Draper, Stavros Petrou, Henrique Barros, Marina Cuttini, Liis Toome, Priscille Sauvegrain, Rym El Rafei, Equipe 1 : EPOPé - Épidémiologie Obstétricale, Périnatale et Pédiatrique (CRESS - U1153), Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Conservatoire National des Arts et Métiers [CNAM] (CNAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Paris (UP)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE)-Conservatoire National des Arts et Métiers [CNAM] (CNAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Paris (UP)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), Collège doctoral [Sorbonne universités], Sorbonne Université (SU), Service de Gynécologie-Obstétrique, Maternité, Chirurgie Gynécologique [CHU Pitié-Salpêtrière], CHU Pitié-Salpêtrière [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU), University of Leicester, Tallinn Children's Hospital [Tallinn, Estonia], University of Tartu, Warwick Medical School, University of Warwick [Coventry], Nuffield Department of Primary Care Health Sciences, University of Oxford, University of Oxford [Oxford], Universidade do Porto, European Foundation for the Care of Newborn Infants [Munich, Germany] (EFCNI), Maastricht University Medical Centre (MUMC), Maastricht University [Maastricht], IRCCS Ospedale Pediatrico Bambino Gesù [Roma], The research received funding from the European Union’s Horizon 2020 Research and Innovation Programme under grant agreement No. 633724. A.-V.S. has a doctoral contract funded by Sorbonne Université Collège Doctoral, Paris, France., SHIPS Research Group: J Lebeer, P Van Reempts, E Bruneel, E Cloet, A Oostra, E Ortibus, I Sarrechia, K Boerch, P Pedersen, L Toome, H Varendi, M Männamaa, P-Y Ancel, A Burguet, P-H Jarreau, V Pierrat, A Nuytten, R F Maier, M Zemlin, B Misselwitz, L Wohlers, M Cuttini, I Croci, V Carnielli, G Ancora, G Faldella, F Ferrari, A van Heijst, C Koopman-Esseboom, J Gadzinowski, J Mazela, A Montgomery, T Pikuła, H Barros, R Costa, C Rodrigues, U Aden, E S Draper, A Fenton, S J Johnson, S Mader, N Thiele, J M Pfeil, S Petrou, J Zeitlin, A Aubert, C Bonnet, R El Rafei, A-V Seppänen, European Project: 633724,H2020,H2020-PHC-2014-two-stage,SHIPS(2015), Instituto de Saúde Pública da Universidade do Porto, Conservatoire National des Arts et Métiers [CNAM] (CNAM), HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE)-Conservatoire National des Arts et Métiers [CNAM] (CNAM), HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), Collège Doctoral, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU), University of Oxford, Universidade do Porto = University of Porto, Kindergeneeskunde, MUMC+: MA Niet Med Staf Onderz Beh Kindergeneeskunde (9), RS: GROW - R4 - Reproductive and Perinatal Medicine, The SHIPS Research Group, Seppanen, Anna-Veera, and Screening to improve Health In very Preterm infantS in Europe - SHIPS - - H20202015-09-01 - 2018-08-31 - 633724 - VALID

Subjects
COUNTRIES, medicine.medical_specialty, BIRTH-RATES, SATISFACTION, media_common.quotation_subject, Cerebral palsy, 03 medical and health sciences, MESH: Cohort Study, 0302 clinical medicine, 030225 pediatrics, MESH: Child, Health care, MESH: Preterm Birth, Medicine, Psychology, media_common, Selection bias, Response rate (survey), RISK, OUTCOMES, MESH: Health Services, BARRIERS, business.industry, Medical record, MESH: Follow-Up Studies, SERVICES, medicine.disease, EXPERIENCES, 3. Good health, [SDV.SPEE] Life Sciences [q-bio]/Santé publique et épidémiologie, Family medicine, Pediatrics, Perinatology and Child Health, Cohort, [SDV.SPEE]Life Sciences [q-bio]/Santé publique et épidémiologie, Human medicine, Thematic analysis, QUALITY-OF-CARE, business, 030217 neurology & neurosurgery, Cohort study
Abstract

Background Follow-up of very preterm infants is essential for reducing risks of health and developmental problems and relies on parental engagement. We investigated parents’ perceptions of post-discharge healthcare for their children born very preterm in a European multi-country cohort study. Methods Data come from a 5-year follow-up of an area-based cohort of births Results Questionnaires were returned for 3635 children (53.8% response rate). Care was rated as poor/fair for 14.2% [from 6.1% (France) to 31.6% (Denmark)]; rates were higher when children had health or developmental problems (e.g. cerebral palsy (34.4%) or epilepsy (36.9%)). From 971 responses, 4 themes and 25 subthemes concerning care improvement were identified. Conclusions Parents’ experiences provide guidance for improving very preterm children’s post-discharge care; this is a priority for children with health and developmental problems as parental dissatisfaction was high. Impact In a European population-based very preterm birth cohort, parents rated post-discharge healthcare as poor or fair for 14.2% of children, with a wide variation (6.1–31.6%) between countries. Dissatisfaction was reported in over one-third of cases when children had health or developmental difficulties, such as epilepsy or cerebral palsy. Parents’ free-text suggestions for improving preterm-related post-discharge healthcare were similar across countries; these focused primarily on better communication with parents and better coordination of care. Parents’ lived experiences are a valuable resource for understanding where care improvements are needed and should be included in future research.

Published
2021
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2. Follow-up after very preterm birth in Europe

Author

Stavros Petrou, Sung Wook Kim, Henrique Barros, Liis Toome, Marina Cuttini, Arno van Heijst, Elizabeth S Draper, Jennifer Zeitlin, Anna-Veera Seppänen, Lazaros Andronis, Pernille Pedersen, Ulrika Ådén, Rolf F. Maier, Jo Lebeer, Janusz Gadzinowski, SHIPS Res Grp, PHILIBERT, Marianne, Equipe 1 : EPOPé - Épidémiologie Obstétricale, Périnatale et Pédiatrique (CRESS - U1153), Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Conservatoire National des Arts et Métiers [CNAM] (CNAM), HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE)-Conservatoire National des Arts et Métiers [CNAM] (CNAM), HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), Collège Doctoral, Sorbonne Université (SU), Department of Health Sciences [Leicester], University of Leicester, Warwick Medical School, University of Warwick [Coventry], Nuffield Department of Primary Care Health Sciences, University of Oxford, University of Oxford, Epidemiology Research Unit [Porto, Portugal] (EPIUnit), Instituto de Saúde Pública [Porto, Portugal], Universidade do Porto = University of Porto-Universidade do Porto = University of Porto, Children's Hospital [Marburg, Germany] (University Hospital), Philipps Universität Marburg = Philipps University of Marburg, Department of Neonatology [Hvidovre, Denmark], Hvidovre Hospital, Department of Neonatology [Poznań, Poland], Poznan University of Medical Sciences [Poznan, Poland], Department of Primary & Interdisciplinary Care, Disability Studies [Antwerpen, Belgium] (Faculty of Medicine), University of Antwerp (UA), Women's and Children's Health [Stockholm, Sweden], Karolinska Institutet [Stockholm], Tallinn Children's Hospital [Tallinn, Estonia], University of Tartu, Radboud University Medical Center [Nijmegen], Clinical Care and Management Innovation Research Area [Roma, Lazio, Italy], Children's Hospital Bambino Gesù IRCCS [Rome], SHIPS Research Group, Conservatoire National des Arts et Métiers [CNAM] (CNAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Paris (UP)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE)-Conservatoire National des Arts et Métiers [CNAM] (CNAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Paris (UP)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), University of Oxford [Oxford], Universidade do Porto-Universidade do Porto, and Philipps University Marburg [Germany]

Subjects
medicine.medical_specialty, Pediatrics, [SDV]Life Sciences [q-bio], Psychological intervention, Aftercare, Child Welfare, neonatology, 03 medical and health sciences, Child Development, 0302 clinical medicine, Risk Factors, 030225 pediatrics, Intensive care, Epidemiology, Prevalence, medicine, Humans, Very Preterm Birth, 030212 general & internal medicine, Neonatology, ComputingMilieux_MISCELLANEOUS, business.industry, Infant, Newborn, Health services research, Infant, Obstetrics and Gynecology, Gestational age, General Medicine, PostScript, health services research, Patient Discharge, 3. Good health, Europe, [SDV] Life Sciences [q-bio], Child, Preschool, Infant, Extremely Premature, Pediatrics, Perinatology and Child Health, Cohort, Premature Birth, epidemiology, Human medicine, business, Follow-Up Studies
Abstract

Follow-up programmes aim to detect neurodevelopmental and health problems and enable early interventions for children born very preterm (

Published
2021
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3. Managing mother’s own milk for very preterm infants in neonatal units in 11 European countries

Author

Rolf F. Maier, Véronique Pierrat, Jennifer Zeitlin, Henrique Barros, Marina Cuttini, Emilija Wilson, Carina Rodrigues, Liis Toome, Epidemiology Research Unit [Porto, Portugal] (EPIUnit), Instituto de Saúde Pública [Porto, Portugal], Universidade do Porto-Universidade do Porto, Equipe 1 : EPOPé - Épidémiologie Obstétricale, Périnatale et Pédiatrique (CRESS - U1153), Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Conservatoire National des Arts et Métiers [CNAM] (CNAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Paris (UP)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE)-Conservatoire National des Arts et Métiers [CNAM] (CNAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Paris (UP)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), Dpt of Women's and Children's Health [Stockholm], Karolinska University Hospital [Stockholm], Tallinn Children's Hospital [Tallinn, Estonia], University of Tartu, Clinical Care and Management Innovation Research Area [Rome, Italy], Children's Hospital Bambino Gesù IRCCS [Rome], IRCCS Ospedale Pediatrico Bambino Gesù [Roma], Children's Hospital [Marburg, Germany] (University Hospital), Philipps University Marburg [Germany], Departamento de Ciências da Saúde Pública e Forenses e Educação Médica [Porto, Portugal], Faculdade de Medicina da Universidade do Porto (FMUP), Foundation for Science and Technology - FCT (Portuguese Ministry of Science, Technology and Higher Education) Operational Programmes Competitiveness and Internationalization (COMPETE 2020) Human Capital (POCH), Portugal 2020, under the EPIUnit POCI-01-0145-FEDER-006862 UID/DTP/04750/2019SFRH/BD/111794/2015, EPICE Research Group, European Project: 259882,EC:FP7:HEALTH,FP7-HEALTH-2010-two-stage,EPICE(2011), Universidade do Porto = University of Porto-Universidade do Porto = University of Porto, Conservatoire National des Arts et Métiers [CNAM] (CNAM), HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE)-Conservatoire National des Arts et Métiers [CNAM] (CNAM), HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), Philipps Universität Marburg = Philipps University of Marburg, PHILIBERT, Marianne, and Effective Perinatal Intensive Care in Europe: translating knowledge into evidence based practice - EPICE - - EC:FP7:HEALTH2011-01-01 - 2015-12-31 - 259882 - VALID

Subjects
Pediatrics, medicine.medical_specialty, [SDV]Life Sciences [q-bio], MEDLINE, Mothers, 03 medical and health sciences, 0302 clinical medicine, 030225 pediatrics, Intensive Care Units, Neonatal, medicine, Animals, Humans, Infant, Very Low Birth Weight, 030212 general & internal medicine, Infant Nutritional Physiological Phenomena, ComputingMilieux_MISCELLANEOUS, Milk, Human, business.industry, Infant, Newborn, Infant, General Medicine, [SDV] Life Sciences [q-bio], Very preterm, Europe, Breast Feeding, Pediatrics, Perinatology and Child Health, Female, business, Breast feeding, Infant, Premature
Abstract

International audience; no abstract available

Published
2021
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4. Mental health services during the first wave of the COVID-19 pandemic in Europe: Results from the EPA Ambassadors Survey and implications for clinical practice

Author

Simavi Vahip, Anne Kleinberg, Martina Rojnic Kuzman, Mariana Pinto da Costa, Celso Arango, Lubomira Izakova, Jana Chihai, Ramune Mazaliauskiene, Geert Dom, Andrea Fiorillo, Goran Mihajlović, Pavel Mohr, Julian Beezhold, William Flannery, Doina Cozman, Judit Balazs, Jerzy Samochowiec, Izet Pajević, Oleg Skugarevsky, Eka Chkonia, Philip Goorwod, Alma Mihaljević Peleš, University Hospital Centre Zagreb, Partenaires INRAE, Ege university, University of the Study of Campania Luigi Vanvitelli, University of East Anglia [Norwich] (UEA), King‘s College London, Institute of Biomedical Sciences Abel Salazar - ICBAS [Porto, Portugal], Belarusian State Medical University (BSMU), The Collaborative Antwerp Psychiatric Research Institute (CAPRI), University of Antwerp (UA), Univerzitet u Tuzli [Tuzla, Bosnie-Herzégovine], Charles University [Prague] (CU), Tallinn Children's Hospital [Tallinn, Estonia], University of Tartu, Tbilisi State University, Eötvös Loránd University (ELTE), Bjørknes University College [Oslo, Norvège], Mater Misericordiae University Hospital [Dublin] (The Mater Hospital), Hospital of Lithuanian University of Health Sciences Kauno Klinikos [Kaunas, Lithuania], University Nicolae Testemitanu [Kishinev, Moldova] (UNT), West Pomeranian University of Technology Szczecin, Iuliu Hatieganu University of Medicine & Pharmacy, University of Kragujevac, Comenius University in Bratislava, Spanish Society of Psychiatry [Madrid, Spain] (SSP), Institut de psychiatrie et neurosciences de Paris (IPNP - U1266 Inserm), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Paris (UP), Clinique des maladies mentales et de l'encéphale (CMME - Service de psychiatrie), Hôpital Sainte-Anne-Université de Paris (UP), Mater Misericordiae University Hospital (The Mater Hospital), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité), Hôpital Sainte-Anne-Université Paris Cité (UPCité), and Martinez Rico, Clara

Subjects
Adult, Male, medicine.medical_specialty, Coronavirus disease 2019 (COVID-19), Service delivery framework, Care, mental health, policy, 03 medical and health sciences, 0302 clinical medicine, Surveys and Questionnaires, Pandemic, Health care, medicine, Humans, Psychology, Pandemics, Societies, Medical, ComputingMilieux_MISCELLANEOUS, Psychiatry, [SDV.MHEP] Life Sciences [q-bio]/Human health and pathology, business.industry, Mental Disorders, Telepsychiatry, COVID-19, mental health services, Middle Aged, EPA Policy Paper, Mental health, 3. Good health, 030227 psychiatry, Clinical Practice, Europe, Psychiatry and Mental health, Family medicine, Professional association, Female, Human medicine, business, 030217 neurology & neurosurgery, [SDV.MHEP]Life Sciences [q-bio]/Human health and pathology
Abstract

Background The COVID-19 pandemic caused an unprecedented worldwide crisis affecting several sectors, including health, social care, economy and society at large. The World Health Organisation has emphasized that mental health care should be considered as one of the core sectors within the overall COVID-19 health response. By March 2020, recommendations for the organization of mental health services across Europe have been developed by several national and international mental health professional associations. Methods The European Psychiatric Association (EPA) surveyed a large European sample of psychiatrists, namely the EPA Ambassadors, on their clinical experience of the impact of COVID-19 pandemic on the treatment of psychiatric patients during the month of April 2020 in order to: a) identify and report the views and experiences of European psychiatrists; and b) represent and share these results with mental health policy makers at European level. Based on the recommendations issued by national psychiatric associations and on the results of our survey, we identified important organisational aspects of mental health care during the peak of the first wave of the COVID-19. Results While most of the recommendations followed the same principles, significant differences between countries emerged in service delivery, mainly relating to referrals to outpatients and for inpatient admission, assessments and treatment for people with mental disorders. Compared to previous months, the mean number of patients treated by psychiatrists in outpatient settings halved in April 2020. In the same period, the number of mentally ill patients tested for, or developing, COVID-19 was low. In most of countries, traditional face-to-face visits were replaced by online remote consultations. Conclusions Based on our findings we recommend: 1) to implement professional guidelines into practice and harmonize psychiatric clinical practice across Europe; 2) to monitor the treatment outcomes of patients with COVID-19 and pre-existing mental disorders; 3) to keep psychiatric services active by using all available options (for example telepsychiatry); 4) to increase communication and cooperation between different health care providers., European Psychiatric Association, The work was funded by the European Psychiatric Association.

Published
2021
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5. Compulsory admissions of patients with mental disorders: State of the art on ethical and legislative aspects in 40 European countries

Author

N. Neznanov, K. Gasparyan, Chris Baeken, Bernardo Carpiniello, A. Lehmets, Geert Dom, H. Brunn, William Flannery, C. Hanon, E. Prinsen, E. Slodecki, G. Ostorharics-Horvath, Peter Falkai, Przemyslaw Bienkowski, Erkki Isometsä, M. F. Bravo Ortiz, G. Lynch, Oleg Skugarevsky, T. Kurimay, Pavel Mohr, N. Camilleri, U.F. Malt, M. Rojnic Kuzman, L. Izakova, E. Terauds, Izet Pajević, Ömer Böke, Jerzy Samochowiec, V. Miklavic, A. Kleinberg, Z. Zemishlany, N. O. Maruta, P. Voloshyn, A. Popova, P. Gorwood, G. Apter, Simavi Vahip, S. Klæbo Reitan, A. Hedlund, Fuad Ismayilov, Norman Sartorius, L. Vavrusova, C. Rados, S. Tyano, Jana Chihai, Rachel Taylor-East, F. Öncü, P. Varandas, M. Musalek, N. Ismayilov, A. Mihaljevic Peles, D. S. Stone, A. Roig, Johannes Wancata, O. Gudmundsson, C. Tsopelas, F. Matthys, G. Gerlinger, Goran Mihajlović, E. Chkonia, A. Esanu, M. David, C. Tudose, P. Vallon, Dusica Lecic-Tosevski, P. Courtet, Danuta Wasserman, Andreas Heinz, L. Martin, Y. Savenko, Judit Balazs, C. Maddock, C. Bec, R. Mazaliauskiene, Doina Cozman, A. Soghoyan, M. Munarriz Ferrandis, M. J. Heitor Dos Santos, J. Wise, Nina Lindberg, S. Bailey, P. Pregelj, Julio Bobes, I. Martynikhin, R.J. van der Gaag, K. A. Lundblad, Karolinska Institutet [Stockholm], Groupe Hospitalier du Havre, Université de Rouen Normandie (UNIROUEN), Normandie Université (NU), Universiteit Gent = Ghent University [Belgium] (UGENT), University of Central Lancashire [Preston] (UCLAN), Eötvös Loránd University (ELTE), Medical University of Warsaw - Poland, University of Oviedo, Hospital Universitario La Paz, Universidad Autonoma de Madrid (UAM), University of Southern Denmark (SDU), Ondokuz Mayis University, University of Malta [Malta], Universita degli Studi di Cagliari [Cagliari], University Nicolae Testemitanu [Kishinev, Moldova] (UNT), Tbilisi State Medical University (Department of Pediatrics), Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier), Neuropsychiatrie : recherche épidémiologique et clinique (PSNREC), Université Montpellier 1 (UM1)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM), Iuliu Hatieganu University of Medicine & Pharmacy, University of Antwerp (UA), Ludwig-Maximilians University [Munich] (LMU), Mater Misericordiae University Hospital [Dublin] (The Mater Hospital), Yerevan State Medical University after Mkhitar Heratsi, Institut de psychiatrie et neurosciences de Paris (IPNP - U1266 Inserm), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Paris (UP), Landspitali National University Hospital of Iceland, Hôpital Corentin Celton [Issy-les-Moulineaux], Hôpitaux Universitaires Paris Ouest - Hôpitaux Universitaires Île de France Ouest (HUPO)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Charité - UniversitätsMedizin = Charité - University Hospital [Berlin], Universidade de Lisboa (ULISBOA), Azerbaijan Medical University, University of Helsinki, Comenius University in Bratislava, Tallinn Children's Hospital [Tallinn, Estonia], Semmelweis University [Budapest], Serbian Academy of Sciences and Arts (SASA), Tallinn Central Hospital, Helsinki University Hospital [Helsinki, Finlande], University of Oslo (UiO), First Pavlov State Medical University of St. Petersburg [Russian Federation], Universitair Ziekenhuis [Brussels, Belgium], Lithuanian University of health Sciences [Kaunas], University of Kragujevac, University Hospital Centre Zagreb, Partenaires INRAE, University Medical Centre Ljubljana [Ljubljana, Slovenia] (UMCL), Charles University [Prague] (CU), Sigmund Freud University (SFU), University Clinic Centre Tuzla, University of Ljubljana, Pomeranian Medical University [Szczecin, Poland] (PMU), Belarusian State Medical University (BSMU), Riga Stradins University (RSU), University of Medicine and Pharmacy 'Carol Davila' Bucharest (UMPCD), Kharkiv Medical Academy of Postgraduate Education, Medizinische Universität Wien = Medical University of Vienna, CNWL NHS Foundation Trust [London, UK] (CNWL-NHSFT), Ege university, UAM. Departamento de Psiquiatría, Repositório da Universidade de Lisboa, Université Montpellier 1 (UM1)-Université de Montpellier (UM)-Institut National de la Santé et de la Recherche Médicale (INSERM), Department of Psychiatry, Faculty of Medicine, HUS Psychiatry, and Helsinki University Hospital Area

Subjects
ASSOCIATION EPA GUIDANCE, Coercion, compulsory admission, MESH: Hospitalization, 3124 Neurology and psychiatry, 0302 clinical medicine, C848, Surveys and Questionnaires, Medicine and Health Sciences, Psychology, health care economics and organizations, involuntary admission, Medical model, education.field_of_study, education, communication, Mental Disorders, Legislature, Awareness, mental health, Europe, compulsory admission, psychiatry in Europe, 3. Good health, Europe, Hospitalization, Psychiatry and Mental health, MESH: Commitment of Mentally Ill, Education, human rights, european psychiatric asscoiation, HEALTH, Review/Meta-analyses, medicine.medical_specialty, Medicina, Population, MEDLINE, Stigma (botany), Legislation, 03 medical and health sciences, ethics and human rights, PEOPLE, HIGH-RISK STATES, medicine, Humans, QUALITY, MESH: Mental Disorders, Awareness, communication, compulsory admission, education, ethics and human rights, European Psychiatric Association (EPA), involuntary admission, legal model, medical model, National Psychiatric Associations (NPAs), psychiatry in Europe, stigma, MESH: Surveys and Questionnaires, MESH: Coercion, MESH: Humans, HOSPITAL ADMISSION, National Psychiatric Associations (NPAs), 030227 psychiatry, legal model, stigma, Family medicine, PSYCHIATRIC-PATIENTS, [SDV.MHEP.PSM]Life Sciences [q-bio]/Human health and pathology/Psychiatrics and mental health, Commitment of Mentally Ill, Human medicine, MESH: Europe, European Psychiatric Association (EPA), M260, medical model, 030217 neurology & neurosurgery, Legislation & jurisprudence
Abstract

© The Author(s), 2020. Published by Cambridge University Press on behalf of the European Psychiatric Association. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited., Background: Compulsory admission procedures of patients with mental disorders vary between countries in Europe. The Ethics Committee of the European Psychiatric Association (EPA) launched a survey on involuntary admission procedures of patients with mental disorders in 40 countries to gather information from all National Psychiatric Associations that are members of the EPA to develop recommendations for improving involuntary admission processes and promote voluntary care. Methods: The survey focused on legislation of involuntary admissions and key actors involved in the admission procedure as well as most common reasons for involuntary admissions. Results: We analyzed the survey categorical data in themes, which highlight that both medical and legal actors are involved in involuntary admission procedures. Conclusions: We conclude that legal reasons for compulsory admission should be reworded in order to remove stigmatization of the patient, that raising awareness about involuntary admission procedures and patient rights with both patients and family advocacy groups is paramount, that communication about procedures should be widely available in lay-language for the general population, and that training sessions and guidance should be available for legal and medical practitioners. Finally, people working in the field need to be constantly aware about the ethical challenges surrounding compulsory admissions.

Published
2020
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6. Interferon signature in patients with STAT1 gain‐of‐function mutation is epigenetically determined

Author

Sofie E. Jørgensen, Pärt Peterson, Lili Milani, E. Graham Davies, Vincent Bondet, Mario Saare, Darragh Duffy, Epp Kaleviste, Sascha Sauer, Timothy Ronan Leahy, Helke Nurm, Trine H. Mogensen, Ann-Christine Syvänen, Kai Kisand, Winnie Ip, University of Tartu, Our Lady's Children's Hospital Crumlin (OLCHC), Immunobiologie des Cellules dendritiques, Institut Pasteur [Paris]-Institut National de la Santé et de la Recherche Médicale (INSERM), Aarhus University [Aarhus], Aarhus University Hospital, Tallinn Children's Hospital [Tallinn, Estonia], Great Ormond Street Hospital for Children [London] (GOSH), Max Planck Institute for Molecular Genetics (MPIMG), Max-Planck-Gesellschaft, Max Delbrück Center for Molecular Medicine [Berlin] (MDC), Helmholtz-Gemeinschaft = Helmholtz Association, Uppsala University, The research was funded by the European Union through the European Regional Development Fund (Project No 2014–2020.4.01.15‐0012), by Estonian Research Council (grants PUT1367 for KK, IUT 2‐2 for PP), and by [FP7/2007‐2013] under grant agreement number n° 262055 (ESGI). D. Duffy acknowledges support from the ANR (CE17001002) and Immunoqure for provision of mAbs for Simoa., European Project: 262055,EC:FP7:INFRA,FP7-INFRASTRUCTURES-2010-1,ESGI(2011), Institut Pasteur [Paris] (IP)-Institut National de la Santé et de la Recherche Médicale (INSERM), ANR-16-CE17-0005,GENMSMD,Dissection génétique de la Susceptibilité Mendélienne aux infections mycobactériennes chez l'homme(2016), and ANR-16-CE17-0010,IFNX,Investigation des interferonopathies type I humaine(2016)

Subjects
STAT3 Transcription Factor, 0301 basic medicine, Immunology, chronic mucocutaneous candidiasis, Biology, Epigenesis, Genetic, 03 medical and health sciences, 0302 clinical medicine, Interferon, STAT1 gain-of-function mutation, medicine, Humans, Immunology and Allergy, Genetic Predisposition to Disease, Epigenetics, Phosphorylation, epigenetics, Janus kinase 1, Chromatin binding, autoimmunity, Candidiasis, Chronic Mucocutaneous, 3. Good health, Chromatin, Intracellular signal transduction, STAT1 Transcription Factor, 030104 developmental biology, Gene Expression Regulation, Case-Control Studies, Gain of Function Mutation, Cancer research, type I interferon, [SDV.IMM]Life Sciences [q-bio]/Immunology, Chromatin Immunoprecipitation Sequencing, H3K4me3, Interferons, Chromatin immunoprecipitation, Protein Binding, Signal Transduction, 030215 immunology, medicine.drug
Abstract

International audience; STAT1 gain-of-function (GOF) variants lead to defective Th17 cell development and chronic mucocutaneous candidiasis (CMC), but frequently also to autoimmunity. Stimulation of cells with STAT1 inducing cytokines like interferons (IFN) result in hyperphosphorylation and delayed dephosphorylation of GOF STAT1. However, the mechanism how the delayed dephosphorylation exactly causes the increased expression of STAT1-dependent genes, and how the intracellular signal transduction from cytokine receptors is affected, remains unknown. In this study we show that the circulating levels of IFN-α were not persistently elevated in STAT1 GOF patients. Nevertheless, the expression of interferon signature genes was evident even in the patient with low or undetectable serum IFN-α levels. Chromatin immunoprecipitation (ChIP) experiments revealed that the active chromatin mark trimethylation of lysine 4 of histone 3 (H3K4me3), was significantly enriched in areas associated with interferon-stimulated genes in STAT1 GOF cells in comparison to cells from healthy donors. This suggests that the chromatin binding of GOF STAT1 variant promotes epigenetic changes compatible with higher gene expression and elevated reactivity to type I interferons, and possibly predisposes for interferon-related autoimmunity. The results also suggest that epigenetic rewiring may be responsible for treatment failure of Janus kinase 1/2 (JAK1/2) inhibitors in certain patients.

Published
2019
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7. Treatment Patterns and Use of Resources in Patients With Tuberous Sclerosis Complex: Insights From the TOSCA Registry

Author

Marques, Ruben, Belousoye, Elena, Benedik, Mirjana P., Carter, Tom, Cottin, Vincent, Curatolo, Paolo, Dahlin, Maria, D'Amato, Lisa, d'Augeres, Guillaume Beaure, de Vries, Petrus J., Ferreira, Jose C., Feucht, Martha, Fladrowski, Carla, Hertzberg, Christoph, Jozwiak, Sergiusz, Lawson, John A., Macaya, Alfons, Nabbout, Rima, O'Callaghan, Finbar, Qin, Jiong, Sander, Valentin, Sauter, Matthias, Shah, Seema, Takahashi, Yukitoshi, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard, Kingswood, John C., Jansen, Anna C., Shinohara, Nobuo, LIorie, Shigeo, Kubota, Masaya, Tohyama, Jun, Imai, Katsumi, Kaneda, Mari, Kaneko, Hideo, Uchida, Yasushi, Kirino, Tomoko, Endo, Shoichi, Inoue, Yoshikazu, Uruno, Katsuhisa, Serdaroglu, Ayse, Yapici, Zuhal, Anlar, Banu, Altunbasak, Sakir, Lvova, Olga, Belyaev, Oleg Valeryevich, Agranovich, Oleg, Levitina, Elena Vladislavovna, Maksimova, Yulia Vladimirovna, Karas, Antonina, Jiang, Yuwu, Zou, Liping, Xu, Kaifeng, Zhang, Yushi, Luan, Guoming, Zhang, Yuqin, Wang, Yi, Jin, Meiling, Ye, Dingwei, Liao, Weiping, Zhou, Liemin, Liu, Jie, Liao, Jianxiang, Yan, Bo, Deng, Yanchun, Jiang, Li, Liu, Zhisheng, Huang, Shaoping, Li, Hua, Kim, Kijoong, Chen, Pei-Lung, Lee, Hsiu-Fen, Tsai, Jeng-Dau, Chi, Ching-Shiang, Huang, Chao-Ching, Riney, Australia Kate, Yates, Deborah, Kwan, Patrick, Likasitwattanakul, Surachai, Nabangchang, Charcrin, Chomtho, Lunliya Thampratankul Krisnachai, Katanyuwong, Kamornwan, Sriudomkajorn, Somjit, Wilmshurst, Jo, Segel, Reeval, Gilboa, Tal, Tzadok, Michal, Fattal-Valevski, Aviva, Papathanasopoulos, Panagiotis, Papavasiliou, Antigone Syrigou, Giannakodimos, Stylianos, Gatzonis, Stylianos, Pavlou, Evangelos, Tzoufi, Meropi, Vergeer, A. M. M., Dhooghe, Marc, Verhelst, Helene, Roelens, Filip, Nassogne, Marie Cecile, Defresne, Pierre, De Waele, Liesbeth, Leroy, Patricia, Demonceau, Nathalie, Legros, Benjamin, Van Bogaert, Patrick, Ceulemans, Berten, Dom, Lina, Castelnau, Pierre, Martin, Anne De Saint, Riquet, Audrey, Milh, Mathieu, Cances, Claude, Pedespan, Jean-Michel, Ville, Dorothee, Roubertie, Agathe, Auvin, Stephane, Berquin, Patrick, Richelme, Christian, Allaire, Catherine, Gueden, Sophie, Tich, Sylvie Nguyen The, Godet, Bertrand, Falco Rojas, Maria Luz Ruiz, Campistol Planas, Jaume, Martinez Bermejo, Antonio, Smeyers Dura, Patricia, Roldan Aparicio, Susana, Martinez Gonzalez, Maria Jesus, Lopez Pison, Javier, Blanco Barca, Manuel Oscar, Lopez Laso, Eduardo, Alonso Luengo, Olga, Aguirre Rodriguez, Francisco Javier, Malaga Dieguez, Ignacio, Camacho Salas, Ana, Marti Carrera, Itxaso, Martinez Salcedo, Eduardo, Yoldi Petri, Maria Eugenia, Cancho Candela, Ramon, Carrilho, Ines da Conceicao, Vieira, Jose Pedro, da Silva Oliveira Monteiro, Jose Paulo, de Oliveira Ferreira Leao, Miguel Jorge Santos, Marceano Ribeiro Luis, Catarina Sofia, Mendonca, Carla Pires, Endziniene, Milda, Strautmanis, Jurgis, Talvik, Inga, Canevini, Maria Paola, Gambardella, Antonio, Pruna, Dario, Buono, Salvatore, Fontana, Elena, Dalla Bernardina, Bernardo, Burloiu, Carmen, Cosma, Iuliu Stefan Bacos, Vintan, Mihaela Adela, Popescu, Laura, Zitterbart, Karel, Payerova, Jaroslava, Bratsky, Ladislav, Zilinska, Zuzana, Gruber-Sedlmayr, Ursula, Baumann, Matthias, Laberlandt, Edda, Rostasy, Kevin, Pataraia, Ekaterina, Elmslie, Frances, Johnston, Clare Ann, Crawford, Pamela, Uldall, Peter, Uvebrant, Paul, Rask, Olof, Bjoernvold, Marit, Brodtkorb, Eylert, Sloerdahi, Andreas, Solhoff, Ragnar, Jaatun, Martine Sofie Gilje, Mandera, Marek, Radzikowska, Elzbieta Janina, Wysocki, Mariusz, Fischereder, Michael, Kurlemann, Gerhard, Wilken, Bernd, Wiemer-Kruel, Adelheid, Budde, Klemens, Marquard, Klaus, Knuf, Markus, Hahn, Andreas, Hartmann, Hans, Merkenschlager, Andreas, Trollmann, Regina, Consortium, TOSCA, Investigators, TOSCA, Physiotherapy, Human Physiology and Anatomy, Pediatrics, Public Health Sciences, Mental Health and Wellbeing research group, Neurogenetics, De Waele, L, [Marques R] Novartis Farma SpA, Origgio, Italy. Institute of Biomedicine (IBIOMED), University of Leon, León, Spain. [Belousova E] Research and Clinical Institute of Pediatrics, Pirogov Russian National Research Medical University, Moscow, Russia. [Benedik MP] SPS Pediatrična Klinika, Ljubljana, Slovenia. [Carter T] TSA Tuberous Sclerosis Association, Nottingham, United Kingdom. [Cottin V] Hôpital Louis Pradel, Claude Bernard University Lyon 1, Lyon, France. [Curatolo P] Tor Vergata University Hospital, Rome, Italy. [Macaya A] Servei de Pediatria General i Especialitats, Vall d'Hebron Hospital Universitari, Barcelona, Spain, Vall d'Hebron Barcelona Hospital Campus, Novartis Pharma AG, Universidad de León [León], Pirogov Russian National Reasearch Medical University Moscow, University Medical Centre Ljubljana [Ljubljana, Slovenia] (UMCL), TSA Tuberous Sclerosis Association, Nottingham, United Kingdom, Hôpital Louis Pradel [CHU - HCL], Hospices Civils de Lyon (HCL), Department of Public Health and Cell Biology, University of Rome Tor Vergata, Via Montpellier 1, 00133 Rome, Italy, Karolinska Institutet [Stockholm], Association Sclérose Tubéreuse de Bourneville (Gradignan), University of Cape Town, Centro Hospitalar de Lisboa Central E.P.E, Medizinische Universität Wien = Medical University of Vienna, Universitätsklinik für Kinder-und Jugendheilkunde, Vivantes Klinikum Neukölln [Berlin, Germany] (VKN), Medical University of Warsaw - Poland, Sydney Children's hospital, Fundació Institut de Recerca de l'Hospital Universitari Vall d'Hebron, CHU Necker - Enfants Malades [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Imagine - Institut des maladies génétiques (IHU) (Imagine - U1163), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Paris (UP), Institute of Child Health [London], University College of London [London] (UCL), People's Hospital of Peking University (PEKING - PHPU), Peking University [Beijing], Tallinn Children's Hospital [Tallinn, Estonia], Klinikverbund Kempten-Oberallgäu gGmbH, University of Shizuoka, Service de Génétique Clinique Chromosomique et Moléculaire, CHU Saint-Etienne-Hôpital Nord - Saint-Etienne, St. Sophia Children’s Hospital, Athens, Department of Clinical Genetics, St George’s University Hospitals, and Vrije Universiteit Brussel (VUB)

Subjects
calidad, acceso y evaluación de la atención sanitaria::calidad de la atención sanitaria::mecanismos de evaluación de la atención sanitaria::recopilación de datos::registros [ATENCIÓN DE SALUD], Pediatrics, [SDV]Life Sciences [q-bio], Disease, registry, GUIDELINES, RECOMMENDATIONS, lcsh:RC346-429, Tuberous sclerosis, Epilepsy, 0302 clinical medicine, Health care, Medicine and Health Sciences, 030212 general & internal medicine, TOSCA, TSC, management, rare diseases, resource use, Serveis sanitaris - Administració, Original Research, Esclerosi tuberosa, Settore MED/39, 3. Good health, medicine.anatomical_structure, Neurology, HEALTH-CARE UTILIZATION, BURDEN, Life Sciences & Biomedicine, Congenital, Hereditary, and Neonatal Diseases and Abnormalities::Congenital, Hereditary, and Neonatal Diseases and Abnormalities::Genetic Diseases, Inborn::Congenital, Hereditary, and Neonatal Diseases and Abnormalities::Genetic Diseases, Inborn::Neoplastic Syndromes, Hereditary::Tuberous Sclerosis [DISEASES], enfermedades y anomalías neonatales congénitas y hereditarias::enfermedades y anomalías neonatales congénitas y hereditarias::enfermedades genéticas congénitas::enfermedades y anomalías neonatales congénitas y hereditarias::enfermedades genéticas congénitas::síndromes neoplásicos hereditarios::esclerosis tuberosa [ENFERMEDADES], congenital, hereditary, and neonatal diseases and abnormalities, medicine.medical_specialty, Clinical Neurology, DIAGNOSIS, Bases de dades - Disseny, calidad, acceso y evaluación de la atención sanitaria::prestación sanitaria::recursos en salud [ATENCIÓN DE SALUD], 03 medical and health sciences, MANAGEMENT, medicine, Health Care Quality, Access, and Evaluation::Delivery of Health Care::Health Resources [HEALTH CARE], lcsh:Neurology. Diseases of the nervous system, Science & Technology, Subependymal giant cell astrocytoma, business.industry, Neurosciences, medicine.disease, LYMPHANGIOLEIOMYOMATOSIS, Lymphangioleiomyomatosis, Neurosciences & Neurology, GIANT-CELL ASTROCYTOMA, Neurology (clinical), TSC1, business, 030217 neurology & neurosurgery, Health Care Quality, Access, and Evaluation::Quality of Health Care::Health Care Evaluation Mechanisms::Data Collection::Records::Registries [HEALTH CARE], Rare disease
Abstract

TSC; Resource use; TOSCA TSC; Uso de recursos; TOSCA TSC; Ús de recursos; TOSCA Tuberous Sclerosis Complex (TSC) is a rare autosomal-dominant disorder caused by mutations in the TSC1 or TSC2 genes. Patients with TSC may suffer from a wide range of clinical manifestations; however, the burden of TSC and its impact on healthcare resources needed for its management remain unknown. Besides, the use of resources might vary across countries depending on the country-specific clinical practice. The aim of this paper is to describe the use of TSC-related resources and treatment paterns within the TOSCA registry. A total of 2,214 patients with TSC from 31 countries were enrolled and had a follow-up of up to 5 years. A search was conducted to identify the variables containing both medical and non-medical resource use information within TOSCA. This search was performed both at the level of the core project as well as at the level of the research projects on epilepsy, subependymal giant cell astrocytoma (SEGA), lymphangioleiomyomatosis (LAM), and renal angiomyolipoma (rAML) taking into account the timepoints of the study, age groups, and countries. Data from the quality of life (QoL) research project were analyzed by type of visit and age at enrollment. Treatments varied greatly depending on the clinical manifestation, timepoint in the study, and age groups. GAB Aergics were the most prescribed drugs for epilepsy, and mTOR inhibitors are dramatically replacing surgery in patients with SEGA, despite corrent recommendations proposing both treatment options.mTOR inhibitors are also becoming common treatments in rAML and LAMpatients. Forty-two out of the 143 patients (29.4%) who participated in the QoL research project reported inpatient stays over the last year. Data from non-medical resource use showed the critical impact of TSC on job status and capacity. Disability allowances were more common in children than adults (51.1% vs 38.2%). Psychological counseling, social services and social worker services were needed by

Published
2019
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8. Specialist health care services use in a European cohort of infants born very preterm

Author

Jennifer Zeitlin, Marina Cuttini, Pernille Pedersen, Eva Cloet, Elaine M. Boyle, Janusz Gadzinowski, Anna-Veera Seppänen, Corine Koopman-Esseboom, Henrique Barros, Florence Bodeau-Livinec, Liis Toome, Anna-Karin Edstedt-Bonamy, Rolf F. Maier, Public Health Sciences, Faculty of Medicine and Pharmacy, Pediatrics, Sorbonne Université (SU), Equipe 1 : EPOPé - Épidémiologie Obstétricale, Périnatale et Pédiatrique (CRESS - U1153), Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Université Paris Diderot - Paris 7 (UPD7)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Institut National de la Recherche Agronomique (INRA)-Université Paris Descartes - Paris 5 (UPD5)-Université Sorbonne Paris Cité (USPC)-Université Paris Diderot - Paris 7 (UPD7)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Institut National de la Recherche Agronomique (INRA)-Université Paris Descartes - Paris 5 (UPD5)-Université Sorbonne Paris Cité (USPC), École des Hautes Études en Santé Publique [EHESP] (EHESP), DHU Risques Et Grossesse, Centre National de la Recherche Scientifique (CNRS)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Descartes - Paris 5 (UPD5)-Assistance publique - Hôpitaux de Paris (AP-HP) (APHP), Department of Health Sciences [Leicester, UK], University of Leicester, Department of Medicine [Stockholm, Sweden] (Clinical Epidemiology Unit ), Karolinska Institutet [Stockholm], Women's and Children's Health [Stockholm, Sweden], Clinical Care and Management Innovation Research Area [Rome, Italy], Children's Hospital Bambino Gesù IRCCS [Rome], Tallinn Children's Hospital [Tallinn, Estonia], University of Tartu, Children's Hospital [Marburg, Germany] (University Hospital), Philipps University Marburg [Germany], Public Health [Brussels, Belgium], Vrije Universiteit [Brussels] (VUB), Paediatric Neurology [Brussels, Belgium], Universitair Ziekenhuis [Brussels, Belgium], Department of Neonatology [Utrecht, the Netherlands] (Wilhelmina Children's Hospital), University Medical Center [Utrecht], Department of Neonatology [Hvidovre, Denmark], Hvidovre Hospital, Department of Neonatology [Poznań, Poland], Poznan University of Medical Sciences [Poznan, Poland], ISPUP-EPIUnit, University of Porto Medical School and Institute of Public Health, ISPUP-EPIUnit [Porto, Portugal], Universidade do Porto [Porto], The research received funding from the European Union’s Seventh Framework Programme (FP7/2007-2013) under grant agreement No 259882 and received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 633724. Additional funding is acknowledged from the following regions: France (French Institute of Public Health Research/Institute of Public Health and its partners the French Health Ministry, the National Institute of Health and Medical Research, the National Institute of Cancer, and the National Solidarity Fund for Autonomy, grant ANR-11-EQPX-0038 from the National Research Agency through the French Equipex Program of Investments in the Future, and the PremUp Foundation), Poland (2012- 2015 allocation of funds for international projects from the Polish Ministry of Science and Higher Education), Sweden (Stockholm County Council [ALF-project and Clinical Research Appointment] and by the Department of Neonatal Medicine, Karolinska University Hospital), UK (funding for The Neonatal Survey from Neonatal Networks for East Midlands and Yorkshire and the Humber regions). Anna-Veera Seppänen has a doctoral contract funded by Sorbonne Université, Collège Doctoral, Paris, France., Effective Perinatal Intensive Care in Europe (EPICE) research group : BELGIUM: Flanders (E Martens, G Martens, P Van Reempts), DENMARK: Eastern Region (K Boerch, A Hasselager, L Huusom, O Pryds, T Weber), ESTONIA (L Toome, H Varendi), FRANCE: Burgundy, Ile-de France and Northern Region (PY Ancel, B Blondel, A Burguet, PH Jarreau, P Truffert), GERMANY: Hesse (RF Maier, B Misselwitz, S Schmidt), Saarland (L Gortner), ITALY: Emilia Romagna (D Baronciani, G Gargano), Lazio (R Agostino, D DiLallo, F Franco), Marche (V Carnielli), M Cuttini, NETHERLANDS: Eastern & Central (C Koopman-Esseboom, A Van Heijst, J Nijman), POLAND: Wielkopolska (J Gadzinowski, J Mazela), PORTUGAL: Lisbon and Tagus Valley (LM Graça, MC Machado), Northern region (C Rodrigues, T Rodrigues), H Barros, SWEDEN: Stockholm (AK Bonamy, M Norman, E Wilson), UK: East Midlands and Yorkshire and Humber (E Boyle, ES Draper, BN Manktelow), Northern Region (AC Fenton, DWA Milligan), INSERM, Paris (J Zeitlin, M Bonet, A Piedvache)., ANR-11-EQPX-0038/11-EQPX-0038,RE-CO-NAI,Plateforme de REcherche sur les COhortes d'enfants suivis depuis la NAIssance(2011), European Project: 259882,EC:FP7:HEALTH,FP7-HEALTH-2010-two-stage,EPICE(2011), European Project: 633724,H2020,H2020-PHC-2014-two-stage,SHIPS(2015), Université Paris Descartes - Paris 5 (UPD5)-Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Institut National de la Recherche Agronomique (INRA)-Université Paris Diderot - Paris 7 (UPD7)-Université Paris Descartes - Paris 5 (UPD5)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Institut National de la Recherche Agronomique (INRA)-Université Paris Diderot - Paris 7 (UPD7)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM), Centre National de la Recherche Scientifique (CNRS)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM), Vrije Universiteit Brussel (VUB), Universidade do Porto, ANR-11-EQPX-0038,RE-CO-NAI,Plateforme de REcherche sur les COhortes d'enfants suivis depuis la NAIssance(2011), Seppanen, Anna-Veera, Equipements d'excellence - Plateforme de REcherche sur les COhortes d'enfants suivis depuis la NAIssance - - RE-CO-NAI2011 - ANR-11-EQPX-0038 - EQPX - VALID, Effective Perinatal Intensive Care in Europe: translating knowledge into evidence based practice - EPICE - - EC:FP7:HEALTH2011-01-01 - 2015-12-31 - 259882 - VALID, Screening to improve Health In very Preterm infantS in Europe - SHIPS - - H20202015-09-01 - 2018-08-31 - 633724 - VALID, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS), Philipps Universität Marburg = Philipps University of Marburg, Universidade do Porto = University of Porto, and Assistance publique - Hôpitaux de Paris (AP-HP) (APHP)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS)

Subjects
Male, 030506 rehabilitation, medicine.medical_specialty, Population, Clinical Neurology, Cohort Studies, 03 medical and health sciences, 0302 clinical medicine, Developmental Neuroscience, Risk Factors, Intensive care, Health care, medicine, Humans, Pediatrics, Perinatology, and Child Health, Geography, Medical, education, education.field_of_study, business.industry, Medical record, Infant, Newborn, Infant, Low Birth Weight, Patient Acceptance of Health Care, medicine.disease, 3. Good health, Europe, Low birth weight, Socioeconomic Factors, [SDV.SPEE] Life Sciences [q-bio]/Santé publique et épidémiologie, Child, Preschool, Infant, Extremely Premature, Family medicine, Infant, Small for Gestational Age, Pediatrics, Perinatology and Child Health, Cohort, Small for gestational age, Female, [SDV.SPEE]Life Sciences [q-bio]/Santé publique et épidémiologie, Neurology (clinical), medicine.symptom, 0305 other medical science, business, 030217 neurology & neurosurgery, Specialization, Cohort study
Abstract

Children born very preterm require additional specialist care because of the health and developmental risks associated with preterm birth, but information on their health service use is sparse. We sought to describe the use of specialist services by children born very preterm in Europe.We analysed data from the multi-regional, population-based Effective Perinatal Intensive Care in Europe (EPICE) cohort of births before 32 weeks' gestation in 11 European countries. Perinatal data were abstracted from medical records and parents completed a questionnaire at 2 years corrected age (4322 children; 2026 females, 2296 males; median gestational age 29wks, interquartile range [IQR] 27-31wks; median birthweight 1230g, IQR 970-1511g). We compared parent-reported use of specialist services by country, perinatal risk (based on gestational age, small for gestational age, and neonatal morbidities), maternal education, and birthplace.Seventy-six per cent of the children had consulted at least one specialist, ranging across countries from 53.7% to 100%. Ophthalmologists (53.4%) and physiotherapists (48.0%) were most frequently consulted, but individual specialists varied greatly by country. Perinatal risk was associated with specialist use, but the gradient differed across countries. Children with more educated mothers had higher proportions of specialist use in three countries.Large variations in the use of specialist services across Europe were not explained by perinatal risk and raise questions about the strengths and limits of existing models of care.Use of specialist services by children born very preterm varied across Europe. This variation was observed for types and number of specialists consulted. Perinatal risk was associated with specialist care, but did not explain country-level differences. In some countries, mothers' educational level affected use of specialist services.UTILIZACIÓN DE SERVICIOS DE SALUD ESPECIALIZADOS EN UN ESTUDIO DE COHORTE EUROPEO DE NIÑOS NACIDOS MUY PREMATUROS: OBJETIVO: Niños nacidos muy prematuramente requieren cuidados especializados adicionales debido a su salud y a los riesgos asociados con la prematuros, sin embargo la información sobre el uso de servicios de salud es escasa. Buscamos describir la utilización de servicios especializados por niños nacidos muy prematuramente, en Europa. MÉTODO: Analizamos datos de una cohorte de nacimientos ocurridos antes de las 32 semanas de gestación tomados del Effective Perinatal Intensive Care in Europe (EPICE), basado en la población y multirregional, en 11 países europeos. Los datos perinatales fueron extraídos de las historias clínicas y los padres completaron un cuestionario a los 2 años de edad corregida (4.322 niños; 2026 sexo femenino, 2.296 masculino; edad gestacional mediana 29 semanas, rango intercuartílico (IQR) 27-31 semanas; mediana de peso de nacimiento 1.230 gr, IQR 970-1.511 gr). Comparamos el uso de servicios especializados (según informe de los padres) por país, riesgo perinatal (basado en edad gestacional, bajo peso para edad gestacional y morbilidades neonatales), educación materna y lugar de nacimiento. RESULTADOS: En total 65% de los niños habían consultado por lo menos a un especialista, con un rango entre países de 53,7% a 100%. Los especialistas más frecuentemente consultados fueron Oftalmólogos (53,4%) y Fisioterapeutas (48%) pero los especialistas consultados por cada individuo variaron mucho según el país. El riesgo perinatal se asoció al uso de especialista, pero el gradiente varió entre los países. Niños de madres con mayor nivel educativo tuvieron mayor proporción de uso de especialistas en tres países. INTERPRETACIÓN: Las grandes variaciones en el uso de servicios especializados en Europa no fueron explicadas por el riesgo perinatal y arrojan cuestionamientos sobre las fortalezas y limitaciones de los modelos de cuidados existentes.USO DE SERVIÇOS DE SAÚDE ESPECIALIZADOS EM UMA COORTE EUROPÉIA DE LACTENTES NASCIDOS MUITO PREMATUROS: OBJETIVO: Crianças nascidas muito prematuras requerem cuidado especializado adicional por causa dos riscos à saúde e ao desenvolvimento associados ao nascimento premature, mas informações sobreo uso de serviços de saúde são escassas. Procuramos descrever o uso de serviços especializados por crianças nascidas muito prematuras na Europa. MÉTODO: Analisamos dados de uma coorte populacional multi-regional, do Cuidado Intensivo Neonatal Efetivo na Europa (EPICE), com lactentes nascidos antes de 32 semanas de gestação em 11 países europeus. Dados perinatais foram extraídos dos registros médicos, e os pais completaram um questionário com 2 anos de idade corrigida (4.322 crianças; 2.026 do sexo feminino, 2.296 do sexo masculino; idade gestacional mediana 29semanas, intervalo interquartile [IIQ] 27-31sem; peso ao nascimento mediano 1,230g, IIQ 970-1511g). Comparamos o uso de serviços especializados reportados pelos pais por país, risco perinatal (com base na idade gestacional, pequeno para a idade gestacional e morbidades neonatais), educação materna e local de nascimento. RESULTADOS: Setenta e seis por cento das crianças consultou pelo menos um especialista, variando entre países de 53,7 a 100%. Oftalmologistas (53,4%) e fisioterapeutas (48,0%) foram os mais frequentemente consultados, mas os especialistas individuais variaram bastante por país. O risco perinatal se associou com uso de serviços especializados, mas o gradient diferiu entre países. Crianças com mães mais educadas tinham maior proporção de uso de especialistas em três países. INTERPRETAÇÃO: Grandes variações no uso de serviços especializados na Europa não foram explicadas pelo risco perinatal, e levantam questões sobre as forças e limitações dos modelos de cuidado existentes.

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2019
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