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. 2021 Dec 16;11(12):e053373.
doi: 10.1136/bmjopen-2021-053373.

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  1 , Athanasios Maras  1   2 , Larissa S van Bodegom  1   2 , Mathilde M Overbeek  2   3 , Frank C Verhulst  1   4 , Dieter Wolke  5 , Rebecca Appleton  6   7 , Angelo Bertani  8 , Maria G Cataldo  9   10 , Patrizia Conti  11 , David Da Fonseca  12 , Nikolina Davidović  13   14 , Katarina Dodig-Ćurković  15   16   17 , Cecilia Ferrari  18 , Federico Fiori  19   20   21 , Tomislav Franić  13   14 , Charlotte Gatherer  7 , Giovanni De Girolamo  9 , Natalie Heaney  19 , Gaëlle Hendrickx  22 , Alfred Kolozsvari  21 , Flavia Micol Levi  9   23 , Kate Lievesley  19 , Jason Madan  24 , Ottaviano Martinelli  10 , Mathilde Mastroianni  19   20 , Virginie Maurice  25 , Fiona McNicholas  26   27 , Lesley O'Hara  28 , Moli Paul  7   29 , Diane Purper-Ouakil  25 , Veronique de Roeck  22   30 , Frédérick Russet  25 , Melanie C Saam  31 , Ilyas Sagar-Ouriaghli  19 , Paramala J Santosh  19   20 , Anne Sartor  32 , Aurélie Schandrin  25   33 , Ulrike M E Schulze  31 , Giulia Signorini  9 , Swaran P Singh  7 , Jatinder Singh  19   20 , Cathy Street  7 , Priya Tah  7 , Elena Tanase  34 , Sabine Tremmery  22 , Amanda Tuffrey  7 , Helena Tuomainen  7 , Therese A M J van Amelsvoort  35   36 , Anna Wilson  7 , Leanne Walker  7 , Gwen C Dieleman  37 ; Milestone consortium
Collaborators, Affiliations

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 et al. BMJ Open. .

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.

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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).

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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