Research into genetic syndromes is a growing literature. One of the problems with this literature is that in many cases a general profile of behavioural strengths and weaknesses is reported for a particular syndrome. Whilst this provides a good overview of behaviour in genetic syndromes, a greater understanding of the behavioural issues that are present is necessary.
In order to increase knowledge and understanding, research needs to focus on the particular aspects of behaviour that are of interest, and carry out detailed study on these areas. A further problem relates to the applicability of measurement tools to this population. Many measures of behaviour that are suitable for individuals with intellectual disability are not appropriate for this population because they are not specific enough to pick up on certain, perhaps more unusual behaviours that are shown in many genetic syndromes (Dykens, 1995). To address this, we have been developing new measures to examine a range of behaviours. These measures are outlined below together with sample documents.
If you would like to obtain further information about any of our measures (including psychometrics) or receive full copies, please email us at:
Measures and sample documents
The Activity Questionnaire (AQ; Burbidge & Oliver, 2003) - PDF 85KB
The AQ is an 18 item informant-based measure developed to assess overactivity and impulsivity. Informants rate the frequency of behaviours that fall under the following headings: overactivity, impulsivity and impulsive speech. A higher score on a subscale indicates a greater degree of overactivity, impulsivity and impulsive speech.
The measure is designed for use in relation to children and adults with a range of intellectual disability and is suitable for use with verbal and non-verbal and mobile and non-mobile individuals.
The Challenging Behaviour Questionnaire (CBQ; Hyman, Ross & Oliver, 2002)
- PDF 73KB
The CBQ is an 8 item informant-based measure developed to assess the presence of four types of behaviours in people with intellectual disability destruction of property, physical aggression, self-injurious behaviour and stereotyped behaviour.
The questionnaire is suitable for use in reference to children and adults and both verbal and nonverbal individuals.
The Food Related Problems Questionnaire (FRPQ; Russell & Oliver, 2003) - PDF 148KB
The FRPQ is a 16 item informant-based questionnaire that is designed to measures preoccupation with food, impairment of satiety and other food-related ‘challenging behaviour’ in people with intellectual disability. Informants rate the frequency with which different behaviours occur or would occur if given the opportunity. High scores on the FRPQ denote high levels of food-related problems.
While the measure was initially developed for use with people with Prader-Willi syndrome, it can be used to assess food related problems with other individuals with intellectual disability and is suitable for use with verbal and non-verbal, mobile and non-mobile individuals.
The Gastro-oesophageal Distress Questionnaire (Oliver & Wilkie, 2005) - PDF 37KB
The GDQ is a 17 item informant-based questionnaire designed to assess the frequency of behaviours that are indicative of pain in the oesophagus and stomach.
The Mood, Interest and Pleasure Questionnaire (MIPQ-S; Ross, Oliver & Arron, 2003) - PDF 154KB
The MIPQ-S is a 12 item informant questionnaire designed to measure levels of mood, interest and pleasure in people with severe and profound intellectual disability who are unable to self-report. Informants rate the frequency with which operationally defined, observable behaviours occur which relate to the constructs of mood, interest and pleasure. Low scores on the MIPQ denote low mood levels and low levels of interest and pleasure.
The Repetitive Behaviour Questionnaire (RBQ; Moss & Oliver, 2003) - PDF 22KB
The RBQ is a 19 item measure designed to assess the presence, absence and nature of repetitive behaviours across five domains: compulsive behaviours, insistence on sameness, repetitive language, restricted preferences and stereotyped behaviours.
The RBQ is suitable for adults and children with intellectual disabilities and for individuals who are within the autism spectrum. The measure can be used for both verbal and non verbal individuals.
The Sociability Questionnaire for People with Intellectual Disabilities (SQID; Collis, Oliver & Moss, 2006) - PDF 176KB
The SQID is a 25 item informant-based measures designed to assess sociability and shyness/social anxiety with familiar and unfamiliar people in social situations. The measure comprises 13 subscales that cover an individual’s sociability in an assortment of social situations (such as initiating and receiving social behaviours) and the interaction between the main care giver and unfamiliar people on an individual’s sociability. Higher scores on the SQID indicate greater sociability.
The SQID is suitable for use in reference to children and adults with a range of intellectual and verbal abilities.
Dykens, E.M. (1995). Measuring behavioral phenotypes: provocations from the “new genetics”. American Journal on Mental Retardation, 99, 522 – 532.