ABSTRACT
OBJECTIVE: Information on registers of children with special needs will be more meaningful if a validated measure of the severity of impact of a child's disability on life and family is included. DESIGN: We describe the development and initial validation of a parent-completed questionnaire (Generic Lifestyle Assessment Questionnaire LAQ-G) aimed at measuring such impact. RESULTS: Data were collected on 95 case children, representing various disabilities, and 65 control children without disability, and analysed for case-control, test-re-test and inter-reporter reliability. Multidimensional scaling techniques were then used to derive six domains, representing impact of disability in a structure analogous to the participation domains of the revised International Classification ICF (WHO 2001). CONCLUSIONS: Initial results suggest that the LAQ-G is a reliable measure of the impact of disability for children with a range of common disabling conditions.
Subject(s)
Disabled Children , Family Relations , Surveys and Questionnaires/standards , Activities of Daily Living , Adolescent , Attitude to Health , Case-Control Studies , Child , Child, Preschool , Family Health , Humans , Infant , Infant, Newborn , Life Style , Reproducibility of ResultsABSTRACT
The aim of the study was to develop a statistical method to derive a domain structure for the development of an impact of disability index, using multidimensional scaling of questionnaire items and expert and non-expert judgement of severity based on standardised videos. The participants were parents of children with cerebral palsy, parents of children in mainstream schools and clinicians with expertise in cerebral palsy, all accessed through child health services in the north east of England. The methods to create a weighted, domain structure for use with the impact of disability index were developed. Multidimensional scaling techniques can be used to derive dimensional data structures. Standardised video material can be used to elicit expert judgements of severity of disability.
Subject(s)
Cerebral Palsy/psychology , Child Care/psychology , Cost of Illness , Disabled Children/psychology , Sickness Impact Profile , Activities of Daily Living , Cerebral Palsy/economics , Cerebral Palsy/physiopathology , Child , Child Care/economics , Data Interpretation, Statistical , England , Female , Health Services Research , Humans , Male , Quality of Life , Registries , Statistics, Nonparametric , Surveys and QuestionnairesABSTRACT
Suitable measures of health and morbidity are less readily available for children than they are for adults. We present a measure, which is used to describe the impact of impairment and disability on the lives of children with cerebral palsy and their families. The development of this measure involved data collected from 691 children with cerebral palsy contained within the North-East England Cerebral Palsy Register and born between 1960 and 1985. Uniquely, multidimensional scaling techniques were used to derive dimensions analogous with those described in the International Classification of Impairments, Disabilities, and Handicaps. We present the analyses undertaken to test the properties of the tool, which show that it is a reliable and valid measure of the disadvantages experienced by children with cerebral palsy.
