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1. Clinical phenotypes of infantile onset CACNA1A-related disorder

Author

Gur-Hartman, Tamar, Berkowitz, Oren, Yosovich, Keren, Roubertie, Agathe, Zanni, Ginevra, Macaya, Alfons, Heimer, Gali, Dueñas, Belén Pérez, Sival, Deborah A., Pode-Shakked, Ben, López-Laso, Eduardo, Humbertclaude, Véronique, Riant, Florence, Bosco, Luca, Cayron, Lital Bachar, Nissenkorn, Andreea, Nicita, Francesco, Bertini, Enrico, Hassin, Sharon, Ben Zeev, Bruria, Zerem, Ayelet, Libzon, Stephanie, Lev, Dorit, Linder, Ilan, Lerman-Sagie, Tally, and Blumkin, Lubov

Published
2021
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2. Demographic, clinical, and service-use characteristics related to the clinician’s recommendation to transition from child to adult mental health services

Author

Gerritsen, S. E., van Bodegom, L. S., Dieleman, G. C., Overbeek, M. M., Verhulst, F. C., Wolke, Dieter, Rizopoulos, D., Appleton, R., van Amelsvoort, T. A. M. J., Bodier Rethore, C., Bonnet-Brilhault, F., Charvin, I., Da Fonseca, D., Davidović, N., Dodig-Ćurković, K., Ferrari, A., Fiori, F., Franić, T., Gatherer, C., de Girolamo, G., Heaney, N., Hendrickx, G., Jardri, R., Kolozsvari, A., Lida-Pulik, H., Lievesley, K., Madan, J., Mastroianni, M., Maurice, V., McNicholas, F., Nacinovich, R., Parenti, A., Paul, M., Purper-Ouakil, D., Rivolta, L., de Roeck, V., Russet, F., Saam, M. C., Sagar-Ouriaghli, I., Santosh, P. J., Sartor, A., Schulze, U. M. E., Scocco, P., Signorini, G., Singh, S. P., Singh, J., Speranza, M., Stagi, P., Stagni, P., Street, C., Tah, P., Tanase, E., Tremmery, S., Tuffrey, A., Tuomainen, H., Walker, L., Wilson, A., Maras, A., Adams, Laura, Allibrio, Giovanni, Armando, Marco, Aslan, Sonja, Baccanelli, Nadia, Balaudo, Monica, Bergamo, Fabia, Bertani, Angelo, Berriman, Jo, Boon, Albert, Braamse, Karen, Breuninger, Ulrike, Buttiglione, Maura, Buttle, Sarah, Schandrin, Aurélie, Cammarano, Marco, Canaway, Alastair, Cantini, Fortunata, Cappellari, Cristiano, Carenini, Marta, Carrà, Giuseppe, Ferrari, Cecilia, Chianura, Krizia, Coleman, Philippa, Colonna, Annalisa, Conese, Patrizia, Costanzo, Raffaella, Daffern, Claire, Danckaerts, Marina, de Giacomo, Andrea, Ermans, Jean-Pierre, Farmer, Alan, Fegert, Jörg M., Ferrari, Sabrina, Galea, Giuliana, Gatta, Michela, Gheza, Elisa, Goglia, Giacomo, Grandetto, MariaRosa, Griffin, James, Levi, Flavia Micol, Humbertclaude, Véronique, Ingravallo, Nicola, Invernizzi, Roberta, Kelly, Caoimhe, Killilea, Meghan, Kirwan, James, Klockaerts, Catherine, Kovač, Vlatka, Liew, Ashley, Lippens, Christel, Macchi, Francesca, Manenti, Lidia, Margari, Francesco, Margari, Lucia, Martinelli, Paola, McFadden, Leighton, Menghini, Deny, Miller, Sarah, Monzani, Emiliano, Morini, Giorgia, Mutafov, Todor, O’Hara, Lesley, Negrinotti, Cristina, Nelis, Emmanuel, Neri, Francesca, Nikolova, Paulina, Nossa, Marzia, Cataldo, Maria Giulia, Noterdaeme, Michele, Operto, Francesca, Panaro, Vittoria, Pastore, Adriana, Pemmaraju, Vinuthna, Pepermans, Ann, Petruzzelli, Maria Giuseppina, Presicci, Anna, Prigent, Catherine, Rinaldi, Francesco, Riva, Erika, Roekens, Anne, Rogers, Ben, Ronzini, Pablo, Sakar, Vehbi, Salvetti, Selena, Martinelli, Ottaviano, Sandhu, Tanveer, Schepker, Renate, Siviero, Marco, Slowik, Michael, Smyth, Courtney, Conti, Patrizia, Spadone, Maria Antonietta, Starace, Fabrizio, Stoppa, Patrizia, Tansini, Lucia, Toselli, Cecilia, Trabucchi, Guido, Tubito, Maria, van Dam, Arno, van Gutschoven, Hanne, van West, Dirk, Vanni, Fabio, Vannicola, Chiara, Varuzza, Cristiana, Varvara, Pamela, Ventura, Patrizia, Vicari, Stefano, Vicini, Stefania, von Bentzel, Carolin, Wells, Philip, Williams, Beata, Zabarella, Marina, Zamboni, Anna, Zanetti, Edda, HASH(0x5651c9679ff8), RS: MHeNs - R2 - Mental Health, Psychiatrie & Neuropsychologie, MUMC+: MA Med Staf Spec Psychiatrie (9), Child and Adolescent Psychiatry / Psychology, Epidemiology, Clinical Child and Family Studies, LEARN! - Child rearing, APH - Mental Health, Centre Hospitalier Régional Universitaire de Tours (CHRU Tours), Lille Neurosciences & Cognition - U 1172 (LilNCog), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Lille-Centre Hospitalier Régional Universitaire [Lille] (CHRU Lille), Centre Hospitalier de Versailles André Mignot (CHV), Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier), CHU Lille, Centre de recherche en épidémiologie et santé des populations (CESP), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay, The MILESTONE project was funded by EU FP7 programme under grant number 602442. SPS is part-funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care West Midlands (NIHR CLAHRC WM), now recommissioned as NIHR Applied Research Collaboration West Midlands. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. PS is the co-inventor of the HealthTrackerTM and is the Chief Executive Officer and shareholder in HealthTracker Ltd. FF is a Chief Technical Officer and AK is the Chief Finance Officer employed by HealthTracker Ltd, respectively. FCV publishes the Dutch translations of ASEBA, from which he receives remuneration. AM was a speaker and advisor for Neurim, Shire, Infectopharm, and Lilly (all not related to transition research)., European Project: 602442,EC:FP7:HEALTH,FP7-HEALTH-2013-INNOVATION-1,MILESTONE(2014), The Milestone Consortium, Gerritsen, S, van Bodegom, L, Dieleman, G, Overbeek, M, Verhulst, F, Wolke, D, Rizopoulos, D, Appleton, R, van Amelsvoort, T, Bodier Rethore, C, Bonnet-Brilhault, F, Charvin, I, Da Fonseca, D, Davidovic, N, Dodig-Curkovic, K, Ferrari, A, Fiori, F, Franic, T, Gatherer, C, de Girolamo, G, Heaney, N, Hendrickx, G, Jardri, R, Kolozsvari, A, Lida-Pulik, H, Lievesley, K, Madan, J, Mastroianni, M, Maurice, V, Mcnicholas, F, Nacinovich, R, Parenti, A, Paul, M, Purper-Ouakil, D, Rivolta, L, de Roeck, V, Russet, F, Saam, M, Sagar-Ouriaghli, I, Santosh, P, Sartor, A, Schulze, U, Scocco, P, Signorini, G, Singh, S, Singh, J, Speranza, M, Stagi, P, Stagni, P, Street, C, Tah, P, Tanase, E, Tremmery, S, Tuffrey, A, Tuomainen, H, Walker, L, Wilson, A, Maras, A, Adams, L, Allibrio, G, Armando, M, Aslan, S, Baccanelli, N, Balaudo, M, Bergamo, F, Bertani, A, Berriman, J, Boon, A, Braamse, K, Breuninger, U, Buttiglione, M, Buttle, S, Schandrin, A, Cammarano, M, Canaway, A, Cantini, F, Cappellari, C, Carenini, M, Carra, G, Ferrari, C, Chianura, K, Coleman, P, Colonna, A, Conese, P, Costanzo, R, Daffern, C, Danckaerts, M, de Giacomo, A, Ermans, J, Farmer, A, Fegert, J, Ferrari, S, Galea, G, Gatta, M, Gheza, E, Goglia, G, Grandetto, M, Griffin, J, Levi, F, Humbertclaude, V, Ingravallo, N, Invernizzi, R, Kelly, C, Killilea, M, Kirwan, J, Klockaerts, C, Kovac, V, Liew, A, Lippens, C, Macchi, F, Manenti, L, Margari, F, Margari, L, Martinelli, P, Mcfadden, L, Menghini, D, Miller, S, Monzani, E, Morini, G, Mutafov, T, O'Hara, L, Negrinotti, C, Nelis, E, Neri, F, Nikolova, P, Nossa, M, Cataldo, M, Noterdaeme, M, Operto, F, Panaro, V, Pastore, A, Pemmaraju, V, Pepermans, A, Petruzzelli, M, Presicci, A, Prigent, C, Rinaldi, F, Riva, E, Roekens, A, Rogers, B, Ronzini, P, Sakar, V, Salvetti, S, Martinelli, O, Sandhu, T, Schepker, R, Siviero, M, Slowik, M, Smyth, C, Conti, P, Spadone, M, Starace, F, Stoppa, P, Tansini, L, Toselli, C, Trabucchi, G, Tubito, M, van Dam, A, van Gutschoven, H, van West, D, Vanni, F, Vannicola, C, Varuzza, C, Varvara, P, Ventura, P, Vicari, S, Vicini, S, von Bentzel, C, Wells, P, Williams, B, Zabarella, M, Zamboni, A, and Zanetti, E

Subjects
Adult mental health service, Adult, Mental Health Services, Parents, Health (social science), Child and adolescent mental health service, Social Psychology, RJ, Epidemiology, ADOLESCENT, Child and adolescent mental health services, Adult mental health services, Young adults, Transition, SDG 3 - Good Health and Well-being, PEOPLE, SCHIZOPHRENIA, Humans, Family, Child, Demography, Mental Disorders, CARE, Psychiatry and Mental health, Young adult, [SDV.SPEE]Life Sciences [q-bio]/Santé publique et épidémiologie, RA
Abstract

Purpose The service configuration with distinct child and adolescent mental health services (CAMHS) and adult mental health services (AMHS) may be a barrier to continuity of care. Because of a lack of transition policy, CAMHS clinicians have to decide whether and when a young person should transition to AMHS. This study describes which characteristics are associated with the clinicians’ advice to continue treatment at AMHS. Methods Demographic, family, clinical, treatment, and service-use characteristics of the MILESTONE cohort of 763 young people from 39 CAMHS in Europe were assessed using multi-informant and standardized assessment tools. Logistic mixed models were fitted to assess the relationship between these characteristics and clinicians’ transition recommendations. Results Young people with higher clinician-rated severity of psychopathology scores, with self- and parent-reported need for ongoing treatment, with lower everyday functional skills and without self-reported psychotic experiences were more likely to be recommended to continue treatment. Among those who had been recommended to continue treatment, young people who used psychotropic medication, who had been in CAMHS for more than a year, and for whom appropriate AMHS were available were more likely to be recommended to continue treatment at AMHS. Young people whose parents indicated a need for ongoing treatment were more likely to be recommended to stay in CAMHS. Conclusion Although the decision regarding continuity of treatment was mostly determined by a small set of clinical characteristics, the recommendation to continue treatment at AMHS was mostly affected by service-use related characteristics, such as the availability of appropriate services.

Published
2022

3. Cohort profile

Author

Gerritsen, Suzanne E., Maras, Athanasios, van Bodegom, Larissa S., Overbeek, Mathilde M., Verhulst, Frank C., Wolke, Dieter, Appleton, Rebecca, Bertani, Angelo, Cataldo, Maria G., Conti, Patrizia, Da Fonseca, David, Davidović, Nikolina, Dodig-Ćurković, Katarina, Ferrari, Cecilia, Fiori, Federico, Franić, Tomislav, Gatherer, Charlotte, De Girolamo, Giovanni, Heaney, Natalie, Hendrickx, Gaëlle, Kolozsvari, Alfred, Levi, Flavia Micol, Lievesley, Kate, Madan, Jason, Martinelli, Ottaviano, Mastroianni, Mathilde, Maurice, Virginie, McNicholas, Fiona, O'Hara, Lesley, Paul, Moli, Purper-Ouakil, Diane, de Roeck, Veronique, Russet, Frédérick, Saam, Melanie C., Sagar-Ouriaghli, Ilyas, Santosh, Paramala J., Sartor, Anne, Schandrin, Aurélie, Schulze, Ulrike M. E., Signorini, Giulia, Singh, Swaran P., Singh, Jatinder, Street, Cathy, Tah, Priya, Tanase, Elena, Tremmery, Sabine, Tuffrey, Amanda, Tuomainen, Helena, van Amelsvoort, Therese A. M. J., Wilson, Anna, Walker, Leanne, Dieleman, Gwen C., Adams, Laura, Allibrio, Giovanni, Armando, Marco, Aslan, Sonja, Baccanelli, Nadia, Balaudo, Monica, Bergamo, Fabia, Berriman, Jo, Rethore, Chrystèle Bodier, Bonnet-Brilhault, Frédérique, Boon, Albert, Braamse, Karen, Breuninger, Ulrike, Buttiglione, Maura, Buttle, Sarah, Cammarano, Marco, Canaway, Alastair, Cantini, Fortunata, Cappellari, Cristiano, Carenini, Marta, Carrà, Giuseppe, Charvin, Isabelle, Chianura, Krizia, Coleman, Philippa, Colonna, Annalisa, Conese, Patrizia, Costanzo, Raffaella, Daffern, Claire, Danckaerts, Marina, Giacomo, Andrea de, Dineen, Peter, Ermans, Jean-Pierre, Farmer, Alan, Fegert, Jörg M., Ferrari, Alessandro, Ferrari, Sabrina, Galea, Giuliana, Gatta, Michela, Gheza, Elisa, Goglia, Giacomo, Grandetto, MariaRosa, Griffin, James, Healy, Elaine, Holmes, Keith, Humbertclaude, Véronique, Ingravallo, Nicola, Invernizzi, Roberta, Jardri, Renaud, Keeley, Helen, Kelly, Caoimhe, Killilea, Meghan, Kirwan, James, Klockaerts, Catherine, Kovač, Vlatka, Lida-Pulik, Hélène, Liew, Ashley, Lippens, Christel, Lynch, Fionnuala, Macchi, Francesca, Manenti, Lidia, Margari, Francesco, Margari, Lucia, Martinelli, Paola, McDonald, James, McFadden, Leighton, Menghini, Deny, Migone, Maria, Miller, Sarah, Monzani, Emiliano, Morini, Giorgia, Mutafov, Todor, Nacinovich, Renata, Negrinotti, Cristina, Nelis, Emmanuel, Neri, Francesca, Nikolova, Paulina, Nossa, Marzia, Noterdaeme, Michele, Operto, Francesca, Panaro, Vittoria, Parenti, Aesa, Pastore, Adriana, Pemmaraju, Vinuthna, Pepermans, Ann, Petruzzelli, Maria Giuseppina, Presicci, Anna, Prigent, Catherine, Rinaldi, Francesco, Riva, Erika, Rivolta, Laura, Roekens, Anne, Rogers, Ben, Ronzini, Pablo, Sakar, Vehbi, Salvetti, Selena, Sandhu, Tanveer, Schepker, Renate, Scocco, Paolo, Siviero, Marco, Slowik, Michael, Smyth, Courtney, Spadone, Maria Antonietta, Speranza, Mario, Stagi, Paolo, Stagni, Pamela, Starace, Fabrizio, Stoppa, Patrizia, Tansini, Lucia, Toselli, Cecilia, Trabucchi, Guido, Tubito, Maria, Dam, Arno van, Gutschoven, Hanne Van, West, Dirk van, Vanni, Fabio, Vannicola, Chiara, Varuzza, Cristiana, Varvara, Pamela, Ventura, Patrizia, Vicari, Stefano, Vicini, Stefania, Bentzel, Carolin von, Wells, Philip, Williams, Beata, Zabarella, Marina, Zamboni, Anna, Zanetti, Edda, RS: MHeNs - R2 - Mental Health, Psychiatrie & Neuropsychologie, MUMC+: MA Med Staf Spec Psychiatrie (9), Child and Adolescent Psychiatry / Psychology, Clinical Child and Family Studies, LEARN! - Child rearing, and APH - Mental Health

Subjects
Adult, Internationality, SAMPLE, RJ, child & adolescent psychiatry, ADOLESCENT, Jugendpsychiatrie, Cohort Studies, SDG 3 - Good Health and Well-being, ddc:150, QUALITY-OF-LIFE, Psychiatrische Versorgung, Child psychiatry, Humans, Prospective Studies, SCALE, Demography, Retrospective Studies, Psychiatry, Internationalität, OUTCOMES, DDC 150 / Psychology, Adolescent psychiatry, international health services, General Medicine, WHOQOL-BREF, Europe, Mental Health, Mental health services, CROSS, Adolescent Health Services, EXPERIENCE, Kinderpsychiatrie, adult psychiatry, RA, TRANSITION, RC
Abstract

PurposeThe presence of distinct child and adolescent mental health services (CAMHS) and adult mental health services (AMHS) impacts continuity of mental health treatment for young people. However, we do not know the extent of discontinuity of care in Europe nor the effects of discontinuity on the mental health of young people. Current research is limited, as the majority of existing studies are retrospective, based on small samples or used non-standardised information from medical records. The MILESTONE prospective cohort study aims to examine associations between service use, mental health and other outcomes over 24 months, using information from self, parent and clinician reports.ParticipantsSeven hundred sixty-three young people from 39 CAMHS in 8 European countries, their parents and CAMHS clinicians who completed interviews and online questionnaires and were followed up for 2 years after reaching the upper age limit of the CAMHS they receive treatment at.Findings to dateThis cohort profile describes the baseline characteristics of the MILESTONE cohort. The mental health of young people reaching the upper age limit of their CAMHS varied greatly in type and severity: 32.8% of young people reported clinical levels of self-reported problems and 18.6% were rated to be ‘markedly ill’, ‘severely ill’ or ‘among the most extremely ill’ by their clinician. Fifty-seven per cent of young people reported psychotropic medication use in the previous half year.Future plansAnalysis of longitudinal data from the MILESTONE cohort will be used to assess relationships between the demographic and clinical characteristics of young people reaching the upper age limit of their CAMHS and the type of care the young person uses over the next 2 years, such as whether the young person transitions to AMHS. At 2 years follow-up, the mental health outcomes of young people following different care pathways will be compared.Trial registration numberNCT03013595., publishedVersion

Published
2021

4. A cross‐cultural qualitative study of the ethical aspects in the transition from child mental health services to adult mental health services

Author

O'Hara, Lesley, Holme, Ingrid, Tah, Priya, Franić, Tomislav, Vrljičak Davidović, Nikolina, Paul, Moli, Singh, Swaran Preet, Street, Cathy, Tuomainen, Helena, Schulze, Ulrike, McNicholas, Fiona, Madan, Jason, Wolke, Dieter, Warwick, Jane, Canaway, Alastair, Griffin, James, Appleton, Rebecca, Tuffrey, Amanda, Wilson, Anna, Gatherer, Charlotte, Walker, Leanne, Girolamo, Giovanni, Signorini, Giulia, Ferrari, Alessandro, Gheza, Elisa, Ferrari, Cecilia, Rivolta, Laura, Levi, Flavia, Cataldo, Maria, Manenti, Lidia, Morini, Giorgia, Pastore, Adriana, Toselli, Cecilia, Varvara, Pamela, Santosh, Paramala, Sagar‐Ouriaghli, Ilyas, Heaney, Natalie, Singh, Jatinder, Purper‐ Ouakil, Diane, Russet, Frédérick, Maurice, Virginie, Humbertclaude, Véronique, Maras, Athanasios, Bodegom, Larissa, Overbeek, Mathilde, Fegert, Jörg M., Plener, Paul, Saam, Melanie, Breuninger, Ulrike, Schepker, Renate, Noterdaeme, Michele, Tremmery, Sabine, Hendrickx, Gaëlle, Gronostaj, Aleksandra, McKenna, Rachael, Lievesley, Kate, Fiori, Federico, Verhulst, Frank, Dieleman, Gwen C, Gerritsen, Suzanne, Wohner, Andrea, The MILESTONE Consortium, Child and Adolescent Psychiatry / Psychology, and Clinical Child and Family Studies

Subjects
Male, Child Health Services, Paternalism, 0302 clinical medicine, Health care, Child, media_common, 05 social sciences, Middle Aged, Justice and Strong Institutions, Psychiatry and Mental health, Transition, Female, Psychology, Autonomy, 050104 developmental & child psychology, Adult, Cross-Cultural Comparison, Mental Health Services, Transition to Adult Care, SDG 16 - Peace, Adolescent, Croatia, media_common.quotation_subject, Clinical Decision-Making, education, Stigma (botany), child and adolescent mental health services, adult mental health services, decision-making, qualitative research, ethics, Young Adult, 03 medical and health sciences, Nursing, SDG 3 - Good Health and Well-being, Humans, Cross-cultural, 0501 psychology and cognitive sciences, business.industry, SDG 16 - Peace, Justice and Strong Institutions, Mental health, Focus group, United Kingdom, 030227 psychiatry, Pediatrics, Perinatology and Child Health, business, Ireland, Qualitative research
Abstract

Background: Transitioning from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) raises novel ethical aspects for healthcare professionals, as well as for young people, their parents and carers. Method: Focus groups were conducted in Croatia, Ireland and the United Kingdom with youth mental health groups and youth representatives with no mental health (MH) remit. One hundred and eleven participants, aged from 16 to 60 years, contributed to discussions. Results: Perpetuation of stigma, autonomy and decision-making were central themes as both enablers and deterrents of successful transition. The tension between professional (and at times parental) paternalism and young persons' growing autonomy was well captured in the themes; (a) desired practice, (b) who should decide, (c) the process of decision-making and (d) potential harm(s). Conclusions: This study provides insight into the ethical values, particularly autonomy and collaboratively working, which people expect to underpin the transition between CAMHS and AMHS. Key Practitioner Message: Engaging young people early in making decisions about their future care can enhance trust between practitioner and the young person. In addition to diagnosis, a number of factors (such as moving home; waiting lists and stigma) may need to be taken into account when considering the direction of future health care. When possible, alternatives to AMHS should be considered if considered by the young person to be a less-stigmatising treatment option.

Published
2020

5. Effect of managed transition on mental health outcomes for young people at the child–adult mental health service boundary : a randomised clinical trial

Author

Singh, S. P., Tuomainen, H., Bouliotis, G., Canaway, A., De Girolamo, G., Dieleman, G. C., Franić, T., Madan, J., Maras, A., McNicholas, F., Paul, M., Purper-Ouakil, D., Santosh, P., Schulze, U. M.E., Street, C., Tremmery, S., Verhulst, F. C., Wells, P., Wolke, D., Warwick, J., Tah, Priya, Griffin, James, Appleton, Rebecca, Heaney, Natalie, Lievesley, Kate, Mastroianni, Mathilde, Singh, Jatinder, Adams, Laura, Signorini, Giulia, Ferrari, Alessandro, Gheza, Elisa, Ferrari, Cecilia, Rivolta, Laura, Levi, Flavia, Cataldo, Maria, Manenti, Lidia, Morini, Giorgia, Pastore, Adriana, Stagni, Pamela, Toselli, Cecilia, Varvara, Pamela, Russet, Frédérick, Maurice, Virginie, Humbertclaude, Véronique, Bodegom, Larissa S.Van, Overbeek, Mathilde M., Gerritsen, Suzanne E., Saam, Melanie, Breuninger, Ulrike, Hendrickx, Gaëlle, The MILESTONE Consortium, and Child and Adolescent Psychiatry / Psychology

Subjects
Clinical trial, Psychiatry and Mental health, medicine.medical_specialty, SDG 3 - Good Health and Well-being, RJ, medicine, Psychiatry, Psychology, Mental health, Applied Psychology, Boundary (real estate), Mental health service
Abstract

BackgroundPoor transition planning contributes to discontinuity of care at the child–adult mental health service boundary (SB), adversely affecting mental health outcomes in young people (YP). The aim of the study was to determine whether managed transition (MT) improves mental health outcomes of YP reaching the child/adolescent mental health service (CAMHS) boundary compared with usual care (UC).MethodsA two-arm cluster-randomised trial (ISRCTN83240263 and NCT03013595) with clusters allocated 1:2 between MT and UC. Recruitment took place in 40 CAMHS (eight European countries) between October 2015 and December 2016. Eligible participants were CAMHS service users who were receiving treatment or had a diagnosed mental disorder, had an IQ ⩾ 70 and were within 1 year of reaching the SB. MT was a multi-component intervention that included CAMHS training, systematic identification of YP approaching SB, a structured assessment (Transition Readiness and Appropriateness Measure) and sharing of information between CAMHS and adult mental health services. The primary outcome was HoNOSCA (Health of the Nation Outcome Scale for Children and Adolescents) score 15-months post-entry to the trial.ResultsThe mean difference in HoNOSCA scores between the MT and UC arms at 15 months was −1.11 points (95% confidence interval −2.07 to −0.14, p = 0.03). The cost of delivering the intervention was relatively modest (€17–€65 per service user).ConclusionsMT led to improved mental health of YP after the SB but the magnitude of the effect was small. The intervention can be implemented at low cost and form part of planned and purposeful transitional care.

Published
2021

6. Validation of genetic modifiers for Duchenne muscular dystrophy: a multicentre study assessing SPP1 and LTBP4 variants

Author

van den Bergen, Janneke C, Hiller, Monika, Böhringer, Stefan, Vijfhuizen, Linda, Ginjaar, Hendrika B, Chaouch, Amina, Bushby, Kate, Straub, Volker, Scoto, Mariacristina, Cirak, Sebahattin, Humbertclaude, Véronique, Claustres, Mireille, Scotton, Chiara, Passarelli, Chiara, Lochmüller, Hanns, Muntoni, Francesco, Tuffery-Giraud, Sylvie, Ferlini, Alessandra, Aartsma-Rus, Annemieke M, Verschuuren, Jan J G M, ʼt Hoen, Peter AC, and Spitali, Pietro

Published
2015
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7. Severe phenotypic spectrum of biallelic mutations in PRRT2 gene

Author

Delcourt, Marion, Riant, Florence, Mancini, Josette, Milh, Mathieu, Navarro, Vincent, Roze, Emmanuel, Humbertclaude, Véronique, Korff, Christian, Des Portes, Vincent, Szepetowski, Pierre, Doummar, Diane, Echenne, Bernard, Quintin, Samuel, Leboucq, Nicolas, Singh Amrathlal, Rabbind, Rochette, Jacques, and Roubertie, Agathe

Published
2015
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9. Genotype-Phenotype Analysis in 2,405 Patients with a Dystrophinopathy Using the UMD-DMD Database: A Model of Nationwide Knowledgebase

Author

Tuffery-Giraud, Sylvie, Béroud, Christophe, Leturcq, France, Yaou, Rabah Ben, Hamroun, Dalil, Michel-Calemard, Laurence, Moizard, Marie-Pierre, Bernard, Rafaëlle, Cossée, Mireille, Boisseau, Pierre, Blayau, Martine, Creveaux, Isabelle, Guiochon-Mantel, Anne, de Martinville, Bérengère, Philippe, Christophe, Monnier, Nicole, Bieth, Eric, Van Kien, Philippe Khau, Desmet, Franc-ois-Olivier, Humbertclaude, Véronique, Kaplan, Jean-Claude, Chelly, Jamel, and Claustres, Mireille

Published
2009
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11. Multiexon Skipping Leading to an Artificial DMD Protein Lacking Amino Acids from Exons 45 Through 55 Could Rescue Up to 63% of Patients With Duchenne Muscular Dystrophy

Author

Béroud, Christophe, Tuffery-Giraud, Sylvie, Matsuo, Masafumi, Hamroun, Dalil, Humbertclaude, Véronique, Monnier, Nicole, Moizard, Marie-Pierre, Voelckel, Marie-Antoinette, Calemard, Laurence Michel, Boisseau, Pierre, Blayau, Martine, Philippe, Christophe, Cossée, Mireille, Pagès, Michel, Rivier, François, Danos, Olivier, Garcia, Luis, and Claustres, Mireille

Published
2007
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13. Benign paroxysmal torticollis, benign paroxysmal vertigo, and benign tonic upward gaze are not benign disorders.

Author

Humbertclaude, Véronique, Krams, Benjamin, Nogue, Erika, Nagot, Nicolas, Annequin, Daniel, Tourniaire, Barbara, Tournier‐Lasserve, Elisabeth, Riant, Florence, Roubertie, Agathe, Echenne, Bernard, Nguyen, Marie‐Ange, Doummar, Diane, Milh, Mathieu, Napuri, Silvia, Lion‐François, Laurence, Tardieu, Marc, Cheuret, Emmanuel, Spitz, Marie‐Aude, Saint Martin, Anne, and Dubois, Fanny

Subjects
*BENIGN paroxysmal positional vertigo, *NEUROLOGICAL disorders, *MEDICAL care, *EPISODIC memory, *GENETIC disorders, *AGE factors in disease, *CALCIUM, *COMPARATIVE studies, *EYE movement disorders, *FAMILY health, *GENETIC techniques, *GROWTH factors, *LEARNING disabilities, *NEUROPSYCHOLOGICAL tests, *GENETIC mutation, *NEUROLOGIC examination, *NONPARAMETRIC statistics, *PSYCHOMOTOR disorders, *RESEARCH funding, *TORTICOLLIS, *VERTIGO, *GENETIC testing, *CROSS-sectional method, *RETROSPECTIVE studies
Abstract

Aim: Benign paroxysmal torticollis (BPT), benign paroxysmal vertigo (BPV), and benign tonic upward gaze (BTU) are characterized by transient and recurrent episodes of neurological manifestations. The purpose of this study was to analyse the clinical relationships between these syndromes, associated comorbidities, and genetic bases.Method: In this cross-sectional study, clinical data of patients with BPT, BPV, or BTU were collected with a focus on developmental achievements, learning abilities, and rehabilitation. Neuropsychological assessment and genetic testing were performed.Results: Fifty patients (median age at inclusion 6y) were enrolled. Psychomotor delay, abnormal neurological examination, and low or borderline IQ were found in 19%, 32%, and 26% of the patients respectively. Cognitive dysfunction was present in 27% of the patients. CACNA1A gene mutation was identified in eight families, and KCNA1 and FGF14 mutation in one family respectively. The identification of a CACNA1A mutation was significantly associated with BTU (p=0.03) and with cognitive dysfunction (p=0.01). Patients with BPV were less likely to have cognitive dysfunction.Interpretation: Children with BPT, BPV, or BTU are at high risk of impaired psychomotor and cognitive development. These syndromes should not be regarded as benign and should be considered as part of the spectrum of a neurodevelopmental disorder.What This Paper Adds Ok: Patients with benign paroxysmal torticollis (BPT), benign paroxysmal vertigo (BPV), and benign tonic upward gaze (BTU) have an increased risk of psychomotor delay. These patients also have an increased risk of abnormal neurological examination and cognitive dysfunction. Gene mutations, especially in CACNA1A, were identified in 21% of the families. BPT, BTU, and BPV should not be regarded as benign. BPT, BTU, and BPV should be considered as part of the spectrum of a neurodevelopmental disorder. [ABSTRACT FROM AUTHOR]

Published
2018
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14. Cognitive disorders in patients with CACNA1A mutations

Author

Riant Florence, Nagot Nicolas, Zimmermann Valérie, Humbertclaude Véronique, Krams Benjamin, Nogue Erika, Doummar Diane, Tournier-Lasserve Elisabeth, and Roubertie Agathe

Subjects
Pediatrics, medicine.medical_specialty, business.industry, Pediatrics, Perinatology and Child Health, medicine, In patient, Cognition, Neurology (clinical), General Medicine, business
Published
2017

15. Validation of genetic modifiers for Duchenne muscular dystrophy: a multicentre study assessingSPP1andLTBP4variants

Author

van den Bergen, Janneke C, primary, Hiller, Monika, additional, Böhringer, Stefan, additional, Vijfhuizen, Linda, additional, Ginjaar, Hendrika B, additional, Chaouch, Amina, additional, Bushby, Kate, additional, Straub, Volker, additional, Scoto, Mariacristina, additional, Cirak, Sebahattin, additional, Humbertclaude, Véronique, additional, Claustres, Mireille, additional, Scotton, Chiara, additional, Passarelli, Chiara, additional, Lochmüller, Hanns, additional, Muntoni, Francesco, additional, Tuffery-Giraud, Sylvie, additional, Ferlini, Alessandra, additional, Aartsma-Rus, Annemieke M, additional, Verschuuren, Jan J G M, additional, 't Hoen, Peter AC, additional, and Spitali, Pietro, additional

Published
2014
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16. Comprehensive oligonucleotide array-comparative genomic hybridization analysis: new insights into the molecular pathology of the DMD gene

Author

Ishmukhametova, Aliya, primary, Van Kien, Philippe Khau, additional, Méchin, Déborah, additional, Thorel, Delphine, additional, Vincent, Marie-Claire, additional, Rivier, François, additional, Coubes, Christine, additional, Humbertclaude, Véronique, additional, Claustres, Mireille, additional, and Tuffery-Giraud, Sylvie, additional

Published
2012
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17. Motor and respiratory heterogeneity in Duchenne patients: Implication for clinical trials

Author

Humbertclaude, Véronique, primary, Hamroun, Dalil, additional, Bezzou, Kamel, additional, Bérard, Carole, additional, Boespflug-Tanguy, Odile, additional, Bommelaer, Christine, additional, Campana-Salort, Emmanuelle, additional, Cances, Claude, additional, Chabrol, Brigitte, additional, Commare, Marie-Christine, additional, Cuisset, Jean-Marie, additional, de Lattre, Capucine, additional, Desnuelle, Claude, additional, Echenne, Bernard, additional, Halbert, Cécile, additional, Jonquet, Olivier, additional, Labarre-Vila, Annick, additional, N’Guyen-Morel, Marie-Ange, additional, Pages, Michel, additional, Pepin, Jean-Louis, additional, Petitjean, Thierry, additional, Pouget, Jean, additional, Ollagnon-Roman, Elisabeth, additional, Richelme, Christian, additional, Rivier, François, additional, Sacconi, Sabrina, additional, Tiffreau, Vincent, additional, Vuillerot, Carole, additional, Picot, Marie-Christine, additional, Claustres, Mireille, additional, Béroud, Christophe, additional, and Tuffery-Giraud, Sylvie, additional

Published
2012
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23. Linkage of Benign Familial Infantile Convulsions to Chromosome 16p12-q12 Suggests Allelism to the Infantile Convulsions and Choreoathetosis Syndrome

Author

Caraballo, Roberto, primary, Pavek, Sylvana, additional, Lemainque, Arnaud, additional, Gastaldi, Marguerite, additional, Echenne, Bernard, additional, Motte, Jacques, additional, Genton, Pierre, additional, Cersósimo, Ricardo, additional, Humbertclaude, Véronique, additional, Fejerman, Natalio, additional, Monaco, Anthony P., additional, Lathrop, Mark G., additional, Rochette, Jacques, additional, and Szepetowski, Pierre, additional

Published
2001
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