Cohort profile: demographic and clinical characteristics of the MILESTONE longitudinal cohort of young people approaching the upper age limit of their child mental health care service in Europe

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

Abstract

Purpose: The 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.

Participants: Seven 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 date: This 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 plans: Analysis 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 number: NCT03013595.

Keywords: adult psychiatry; child & adolescent psychiatry; international health services.

Conflict of interest statement

Competing interests: 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).

© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Figures

Figure 1
Figure 1
Flow diagram of participants according to Consolidated Standards of Reporting Trials (CONSORT). CL, clinician; PC, parent/carer; YP, young person.
Figure 2
Figure 2
Psychopathology. (A) proportions of young people with a specific clinical classification were based on a total n of 763, information on clinical classifications was not available for 29 (3.8%) of young people (either information on clinical classification was missing or the young person (YP) did not have clinical classification registered), only categories with n>10 are presented, comorbid disorders are included (each YP could have more than one diagnosis). (B) The Achenbach System of Empirically-Based Assessment scores reported are t-scores; 60–63=borderline clinical scores, ≥64 = clinical scores; Int=internalising problems, Ext=externalising problems, Tot=total emotional/behavioural problems. ADHD, attention deficit hyperactivity disorders (/hyperkinetic disorders); Anx, anxiety disorders; ASD, autism spectrum disorders; Bip, bipolar disorders; CD, conduct disorders; Dep, depressive disorders; ED, eating disorders; OCD, obsessive compulsive disorders; PD, personality disorders; Schiz, schizophrenia spectrum disorders; Som, somatic symptom disorders; Trauma, trauma/stressor disorders.
Figure 3
Figure 3
Mental health service (MHS) use. Note: only diagnosis classifications with n>10 are presented. Anx, anxiety disorders; ADHD, attention deficit hyperactivity disorders (/hyperkinetic disorders); ASD, autism spectrum disorders; Bip, bipolar disorders; CD, conduct disorders; Dep, depressive disorders; ED, eating disorders; OCD, obsessive compulsive disorders; PD, personality disorders; Schiz, schizophrenia spectrum disorders; Som, somatic symptom disorders; Trauma, trauma/stressor disorders.

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