Development of a measure to assess the impact of epilepsy on people with an intellectual disability: the Glasgow Epilepsy Outcome Scale - Client version (GEOS-C).

BACKGROUND: Epilepsy is common in people with intellectual disability, yet clinicians and researchers seldom obtain information directly from the client. The development and preliminary validation of a novel measure for use with people with mild to moderate intellectual disabilities is described. METHODS: Focus group methods (6 groups; 24 participants) identified issues of concern, and qualitative analysis (NUD*IST) was applied to derive items and themes for a draft scale. Psychometric scale development techniques were then used in a pilot study and subsequent field-testing to investigate validity and reliability (n = 46). RESULTS: A total of 148 issues of concern was reduced initially to 52 and then to 42 items using these methods. The derived scale comprised sub-scales reflecting (1) concerns about having seizures; (2) about injury; (3) about issues during; and (4) after seizures; (5) about medication; (6) about what people think; and (7) about daily life. Cronbach alpha for the Glasgow Epilepsy Outcome Scale - Client version (GEOS-C) was 0.92, and ranged from 0.64-0.81 for the sub-scales. Relatively weak associations (r

Psychopathology in people with epilepsy and intellectual disability; an investigation of potential explanatory variables.

OBJECTIVES: There are few studies on epilepsy and psychopathology in people with intellectual disability (mental retardation) despite epilepsy prevalence rates that are thirty times higher than in the general population. The aims of this study, therefore, were to identify reliable, epilepsy-specific predictors of psychiatric and behavioural disorder in these patients, and to investigate reliable predictors of carer stress. METHODS: A database of 685 patients was compiled, from which 250 were randomly selected. Structured interviews were completed on 186 of these 250 patients (74%) (108 men, 78 women; mean age (SD) 35.5 (10.1)) comprising descriptive, clinical and functional components, and validated measures of psychopathology for which comparative data were available. Logistic and linear regression methods were used to identify predictors. RESULTS: One-third of patients with epilepsy and intellectual disability met criteria for possible psychiatric disorder, particularly affective/neurotic disorder; twice the comparison rates for intellectual disability alone. Behavioural problem levels, however, were lower than population norms. Regression models explaining modest amounts of variance (R(2)< or =24%) suggested certain seizure phenomena (greater seizure severity, more seizures in past month, lesser tendency to loss of consciousness during seizures) as particular risk factors for psychiatric disorder. General disability factors such as level of intellectual, sensory or motor disability and side effects of medication, however, contributed more to explaining behavioural problems. Around half of the family carers reported significant stress, and one-third exhibited clinically significant anxiety symptoms. Younger carers were more stressed, and side effects from patients' medication also contributed to carer stress. CONCLUSIONS: Although epilepsy in itself may be a risk factor for psychopathology in a minority of people with intellectual disability, some epilepsy-specific factors may predict psychiatric disorder. Behavioural problems need to be considered separately from psychiatric disorder because general factors, more closely associated with disability, are stronger predictors of their occurrence.

Development and validation of the Glasgow Epilepsy Outcome Scale (GEOS): a new instrument for measuring concerns about epilepsy in people with mental retardation.

PURPOSE: To develop a measure for use with adults with epilepsy and mental retardation, capable of assessing both clinical and care concerns and of quantifying treatment outcomes. METHODS: Extensive validational and other psychometric evaluation was undertaken, comprising initial scale development work with 48 carers and 46 health practitioners, followed by formal field testing on a sample of 186 patients, using 384 respondents (160 clinicians, 141 staff, 83 family). Recognised qualitative methods were applied to identify central themes, and psychometric procedures generated data on validity, reliability, and component structure. RESULTS: A total of 1,007 items of concern was generated, which was reduced systematically to a representative set of 90 items. The GEOS-90 comprises four subscales: concerns about "seizures," "treatment," "caring," and "social impact," each explaining approximately 70% of variance. Subscales and factor scales had strong internal consistency (alpha > or = 0.82). Stepwise linear regression was applied to derive a short-form version with similar structure. Thirty-five items were retained (GEOS-35; alpha > or = 0.89). Both scales discriminated moderately on clinical variables (number of seizure types, mono- vs. polytherapy, seizure frequency; all values of p < 0.05) and demonstrated concurrent validity with interview ratings from the ELDQOL (p < 0.05). CONCLUSIONS: The GEOS scales appear valid and reliable for use with clinical populations of people with mental retardation.

Talking about how difficult we find it.

As part of a study on the health and social support needs of families with a baby aged under one year, twenty families on Merseyside with a baby born in the same month in 1988 were interviewed at home when the baby was between seven and nine months old. The interviews were unstructured, tape recorded and later transcribed in full. Transcripts were indexed to explore the need for, use of and response to, health support systems. Most interviewees felt that post-natal groups would provide valuable support.

Childhood cancer survivors and their offspring studied through a postal survey of general practitioners: preliminary results.

A postal survey is being carried out among the general practitioners of survivors of childhood cancer born before 1963 and treated in Britain. The response rate is currently about 88%. Based on a preliminary analysis of 2001 questionnaires it emerged that fewer childhood cancer survivors married than was expected from the general population. The number of live births to female survivors was 57% of that expected from general population rates. The frequency of congenital malformations among the offspring was not in excess of that expected on the basis of large population based surveillance rates and the number of malignant tumours observed was broadly similar to that expected from general population rates, although the results were based on very small numbers. The present data, taken together with other studies of the offspring of cancer survivors, provides grounds for optimism with regard to the inherited component of childhood cancer and the effects of radiotherapy and cytotoxic drugs on germ cell mutation.