The parents expected intervention to start directly after diagnosis but felt they had to fight to obtain the resources their child needed. After the process, they described that they felt empowered but still alone, i.e. although they received useful and important information about their child, they were left to manage the situation by themselves. As for clinical implications, the study points to the necessity of developing routines to support the parents during and after the diagnostic process. Recommended measures include developing a checklist outlining relevant contacts and agencies, establishing a coordinator responsible for each child, dividing the summary meeting at the clinic into two parts, making more than one visit to the preschool, and providing a parental training programme.
Objective: To describe body composition in patients with short bowel syndrome (SBS) by using bioelectric impedance spectroscopy (BIS), dual-energy X-ray absorptiometry (DXA) measurements and anthropometrical-derived estimates. Subjects: In all, 19 patients were included, mean age 54 y, range 36-77 (F/M¼11/8). Mean BMI was 21.5 kg/m 2 . Eight patients were on home parenteral nutrition (HPN). Methods: Total body water (TBW), intracellular water and extracellular water were assessed by BIS. TBW were derived from DXA. Fat-free mass (FFM) was assessed by BIS and DXA. TBW and FFM were predicted according to an empirical formula. Differences were analysed using the Bland-Altman method. Results: The mean difference between TBW (DXA) and TBW (BIS) was À1.1 l in women and À1.8 l in men. For FFM, the mean difference between FFM (DXA) and FFM (BIS) was À1.7 kg in women and À2.5 kg in men. The mean difference between TBW (DXA) and TBW (BIS) for all patients was -1.2 l and limits of agreement were (-7.80À5.40). Hydration of FFM assessed by BIS gave a mean of 0.75 (0.08). Conclusion: The limits of agreement (Bland-Altman) between DXA and BIS were wide, indicating that methods are not interchangeable, which limits its clinical utility. Most of our patients with SBS were maintained in a stable clinical condition within normal limits of body weight and BMI. FFM and TBW did not appear to be altered in ileostomates or those on HPN.
This study explores current reading profiles and concurrent and early predictors of reading in children with autism spectrum disorder. Before the age of 3 years, the study cohort underwent a neurodevelopmental assessment following identification in a population-based autism screening. At age 8 years, reading, language and cognition were assessed. Approximately half of the sample ( n = 25) were ‘poor readers’ at age 8 years, meaning that they scored below the normal range on tests of single word reading and reading comprehension. And 18 were ‘skilled readers’ performing above cut-offs. The final subgroup ( n = 10) presented with a ‘hyperlexic/poor comprehenders’ profile of normal word reading, but poor reading comprehension. The ‘poor readers’ scored low on all assessments, as well as showing more severe autistic behaviours than ‘skilled readers’. Group differences between ‘skilled readers’ and ‘hyperlexics/poor comprehenders’ were more subtle: these subgroups did not differ on autistic severity, phonological processing or non-verbal intelligence quotient, but the ‘hyperlexics/poor comprehenders’ scored significantly lower on tests of oral language. When data from age 3 were considered, no differences were seen between the subgroups in social skills, autistic severity or intelligence quotient. Importantly, however, it was possible to identify oral language weaknesses in those that 5 years later presented as ‘poor readers’ or ‘hyperlexics’.
The types of strategies used by spouses of persons with neurogenic communicative disabilities seem to be more strongly associated with individual characteristics of communicative ability than with the type of disorder involved. The set of categories developed in this study needs to be trialled on larger groups of participants, and modified if and as necessary, before it can be regarded as a valid system for the description of such strategies in general. Once this has been done it may become a useful instrument in the assessment of the strategies used by communication partners of individuals with communicative disabilities.
Communication partner training can be effective in improving communication in aphasia. However, further research is needed on how to measure the outcome of such interventions. In this paper we discuss the phenomenon of reliability in assessments in relation to the results of analyses using a rating scale designed to measure the ability to support a person with aphasia in natural conversational interaction. The scale was used by four assessors to rate 45 video recordings. Calculations of reliability and agreement produced varying results but were mostly satisfactory. However, the results highlight how interaction between factors such as complexity of assessments; design of the rating scale; factors inherent in the individual assessor; and the statistical measures used to analyse the outcome may result in a conflict between aspects of validity and reliability. Interpretations of outcome obtained with rating scales thus need to be based on knowledge about factors influencing the results.
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