BMJ Open (Dec 2021)

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

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

DOI
https://doi.org/10.1136/bmjopen-2021-053373
Journal volume & issue
Vol. 11, no. 12

Abstract

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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.