Measurement tools for mental health problems and mental well-being in people with severe or profound intellectual disabilities: a systematic review

Research output: Contribution to journalArticlepeer-review


  • Samantha Flynn
  • Leen Vereenooghe
  • Richard P Hastings
  • Dawn Adams
  • Sally-Ann Cooper
  • Nick Gore
  • Chris Hatton
  • Kerry Hood
  • Andrew Jahoda
  • Peter E Langdon
  • Rachel McNamara
  • Ashok Roy
  • Vasiliki Totsika

Colleges, School and Institutes

External organisations

  • Fakultät für Psychologie und Sportwissenschaft, Universität Bielefeld, Germany.
  • The University of Warwick
  • Autism Centre of Excellence, Griffith University, Australia.
  • University of Glasgow
  • University of Kent
  • Lancaster University
  • Cardiff University
  • Coventry and Warwickshire Partnership NHS Trust


Mental health problems affect people with intellectual disabilities (ID) at rates similar to or in excess of the non-ID population. People with severe ID are likely to have persistent mental health problems. In this systematic review (PROSPERO 2015:CRD42015024469), we identify and evaluate the methodological quality of available measures of mental health problems or well-being in individuals with severe or profound ID. Electronic searches of ten databases identified relevant publications. Two reviewers independently reviewed titles and abstracts of retrieved records (n=41,232) and full-text articles (n=573). Data were extracted and the quality of included papers was appraised. Thirty-two papers reporting on 12 measures were included. Nine measures addressed a broad spectrum of mental health problems, and were largely observational. One physiological measure of well-being was included. The Aberrant Behavior Checklist, Diagnostic Assessment for the Severely Handicapped Scale-II and Mood, Interest and Pleasure Questionnaire are reliable measures in this population. However, the psychometric properties of six other measures were only considered within a single study - indicating a lack of research replication. Few mental health measures are available for people with severe or profound ID, particularly lacking are tools measuring well-being. Assessment methods that do not rely on proxy reports should be explored further.


Original languageEnglish
Pages (from-to)32-44
Number of pages13
JournalClinical Psychology Review
Early online date11 Aug 2017
Publication statusPublished - 1 Nov 2017


  • Intellectual disabilities, Mental health, Mental illness, Psychiatric disorder, Mental well-being, Measurement