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

• Published in: Clinical psychology review 2017-11, Vol.57, p.32-44
• Main Authors: Flynn, Samantha, Vereenooghe, Leen, Hastings, Richard P., Adams, Dawn, Cooper, Sally-Ann, Gore, Nick, Hatton, Chris, Hood, Kerry, Jahoda, Andrew, Langdon, Peter E., McNamara, Rachel, Oliver, Chris, Roy, Ashok, Totsika, Vasiliki, Waite, Jane
• Format: Article
• Language: English
• Subjects: Humans; Intellectual disabilities; Intellectual Disability - psychology; Measurement; Mental Disorders - diagnosis; Mental health; Mental illness; Mental well-being; Personal Satisfaction; Psychiatric disorder; Psychiatric Status Rating Scales
• ISSN: 0272-7358; 1873-7811
• DOI: 10.1016/j.cpr.2017.08.006

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. •Few mental health measures for people with severe and profound ID are available.•Very few studies have examined the reliability and validity of measures.•No papers reporting on measures for children with severe/profound ID were found.•The ABC, DASH-II and MIPQ are reliable for use with adults with severe/profound ID.