Objectives To update a 2004 systematic review of health care service use and health outcomes related to differences in health literacy level and interventions designed to improve these outcomes for individuals with low health literacy. Disparities in health outcomes and effectiveness of interventions among different sociodemographic groups were also examined. Data sources We searched MEDLINE®, the Cumulative Index to Nursing and Allied Health Literature, the Cochrane Library, PsychINFO, and the Educational Resources Information Center. For health literacy, we searched using a variety of terms, limited to English and studies published from 2003 to May 25, 2010. For numeracy, we searched from 1966 to May 25, 2010. Review methods We used standard Evidence-based Practice Center methods of dual review of abstracts, full-text articles, abstractions, quality ratings, and strength of evidence grading. We resolved disagreements by consensus. We evaluated whether newer literature was available for answering key questions, so we broadened our definition of health literacy to include numeracy and oral (spoken) health literacy. We excluded intervention studies that did not measure health literacy directly and updated our approach to evaluate individual study risk of bias and to grade strength of evidence. Results We included good- and fair-quality studies: 81 studies addressing health outcomes (reported in 95 articles including 86 measuring health literacy and 16 measuring numeracy, of which 7 measure both) and 42 studies (reported in 45 articles) addressing interventions. Differences in health literacy level were consistently associated with increased hospitalizations, greater emergency care use, lower use of mammography, lower receipt of influenza vaccine, poorer ability to demonstrate taking medications appropriately, poorer ability to interpret labels and health messages, and, among seniors, poorer overall health status and higher mortality. Health literacy level potentially mediates disparities between blacks and whites. The strength of evidence of numeracy studies was insufficient to low, limiting conclusions about the influence of numeracy on health care service use or health outcomes. Two studies suggested numeracy may mediate the effect of disparities on health outcomes. We found no evidence concerning oral health literacy and outcomes. Among intervention studies (27 randomized controlled trials [RCTs], 2 cluster RCTs, and 13 quasi-experimental designs), the strength of evidence for specific design features was low or insufficient. However, several specific features seemed to improve comprehension in one or a few studies. The strength of evidence was moderate for the effect of mixed interventions on health care service use; the effect of intensive self-management inventions on behavior; and the effect of disease-management interventions on disease prevalence/severity. The effects of other mixed interventions on other health outcomes, including knowledge, self-efficacy, adherence, and quality of life, and costs were mixed; thus, the strength of evidence was insufficient. Conclusions The field of health literacy has advanced since the 2004 report. Future research priorities include justifying appropriate cutoffs for health literacy levels prior to conducting studies; developing tools that measure additional related skills, particularly oral (spoken) health literacy; and examining mediators and moderators of the effect of health literacy. Priorities in advancing the design features of interventions include testing novel approaches to increase motivation, techniques for delivering information orally or numerically, "work around" interventions such as patient advocates; determining the effective components of already-tested interventions; determining the cost-effectiveness of programs; and determining the effect of policy and practice interventions.

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Health literacy interventions and outcomes: an updated systematic review.

Hypotheses that children and adolescents with Down syndrome show (a) a specific expressive language impairment, (b) a "critical period" for language acquisition, (c) a "simple sentence syntactic ceiling" in production, and (d) deficit in grammatical morphology were investigated cross-sectionally. Conversational and narrative language samples from 47 children and adolescents with Down syndrome (Trisomy 21), aged 5 to 20 years, were compared to those from 47 control children aged 2 to 6 years matched statistically for nonverbal mental age. Children with Down syndrome appear to have a specific language impairment, compared to control children, in number of different words and total words (in the first 50 utterances) and in mean length of utterance (MLU). Total utterance attempts per minute were more frequent in the Down syndrome group. Narrative samples contained more word tokens, more word types, and longer MLU than conversation samples, for both groups. Intelligibility of narratives was significantly poorer for the Down syndrome group than controls. Analyses of narrative language sample by age sub-group showed no evidence of a critical period for language development ending at adolescence, nor of a "syntactic ceiling" at MLUs corresponding to simple sentences for the Down syndrome group. Omissions of word tokens and types were more frequent in the older Down syndrome than the younger control sample, matched on MLU.

Language skills of children and adolescents with Down syndrome: II. Production deficits

Down syndrome is the most prevalent cause of intellectual impairment associated with a genetic anomaly, in this case, trisomy of chromosome 21. It affects both physical and cognitive development and produces a characteristic phenotype, although affected individuals vary considerably with respect to severity of specific impairments. Studies focusing on the cognitive characteristics of Down syndrome were reviewed, and while performance in most areas could be predicted based upon overall intellectual disability, relative weaknesses were consistently found to be associated with expressive language, syntactic/morphosyntactic processing, and verbal working memory. This profile of uneven deficits could result from a failure to develop typically automatic processing for speech perception and production, and this possibility is discussed along with its implications for intervention.

Down syndrome: Cognitive phenotype

On average, language and communication characteristics of individuals with Down syndrome (the most common genetic cause of intellectual disability) follow a consistent profile. Despite considerable individual variability, receptive language is typically stronger than expressive language, with particular challenges in phonology and syntax. We review the literature on language and literacy skills of individuals with Down syndrome, with emphasis on the areas of phonology, vocabulary, syntax, and pragmatics. We begin by describing the hearing, oral-motor, cognitive, social, and prelinguistic and early nonverbal communication characteristics of individuals with Down syndrome. We conclude with a discussion of clinical implications and research directions.

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Language Characteristics of Individuals with Down Syndrome

Previous studies have reported a specific behavioral phenotype, or a distinct profile of behavioral outcomes, associated with Down syndrome. Until recently, however, there has been little attention given to how this behavioral profile emerges and develops over time. It is argued here that some aspects of the Down syndrome behavioral phenotype are already emerging in infants and toddlers, including emerging relative strengths in some aspects of visual processing, receptive language and nonverbal social functioning, and relative weaknesses in gross motor skills and expressive language skills. Research on the early developmental trajectory associated with Down syndrome (and other genetic disorders) is important because it can help researchers and practitioners formulate interventions that are time-sensitive, and that prevent or offset potential future negative outcomes. This article reviews evidence for the emerging Down syndrome behavioral phenotype in infants, toddlers, and preschoolers. This is followed by a discussion of intervention approaches that specifically target this developing profile, with a focus on language, preliteracy skills, and personality motivation.

https://depts.washington.edu/isei/iyc/fidler_18_2.pdf

The Emerging Down Syndrome Behavioral Phenotype in Early Childhood Implications for Practice

This article presents data from a research study designed to compare the achievements of teenagers with Down syndrome educated in mainstream classrooms or in special education classrooms throughout their full-time education. Progress is reported for speech and language, literacy, socialisation, daily living skills and behaviour. For all the teenagers, there is evidence of progress with age on all the measures except for communication. Communication continued to improve through teenage years for the included children but not for those in special education classrooms. There were no significant differences in overall outcomes for daily living skills or socialisation. However, there were large significant gains in expressive language and literacy skills for those educated in mainstream classrooms. Teenagers educated in mainstream classrooms showed fewer behavioural difficulties. Further, comparison with data published by these authors in an earlier study, showed no improvements in school achievements in special education over a 13 year period in the UK (1986-1999).

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A comparison of mainstream and special education for teenagers with Down syndrome: implications for parents and teachers.

This paper presents the first phase of a longitudinal study following 24 children with Down syndrome who are receiving their education in mainstream primary schools. The literacy, numeracy, language and memory skills of the children with Down syndrome were compared to 2 groups of children selected from their classmates. The comparison groups were a group of typically developing children who were average readers in the classes and a group of children who were matched to the children with Down syndrome for reading age. The baseline data revealed that the children with Down syndrome had uneven cognitive profiles with relatively advanced reading skills compared to their other cognitive skills. The group of ordinary children who were matched to the children with Down syndrome on reading ability, attained significantly higher scores than the children with Down syndrome on all assessments other than reading. However, the reading matched group who were generally of below average reading ability for their age, were also significantly delayed relative to the average readers on measures of language, number and memory. As a group the average readers were average or above average on all measures. A cross-sectional analysis which divided the children with Down syndrome into 3 groups according to age and school year group indicates steady progress in all skills as the children move through primary school.

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Investigating the literacy, language and memory skills of children with Down syndrome

This article describes the development of our interest and expertise in the teaching of reading to children with Down syndrome since 1980 and the insights that we have gained into the children's language learning difficulties while teaching them to read. The readers' attention is drawn to the links between spoken language skills and reading skills and the differences between the strategies an ordinary five year old can use when learning to read and those available to a child or teenager with Down syndrome. The methods of introducing and developing reading skills are outlined, emphasising the principles on which they are based. The same methods are advocated whatever the age of the child at the outset. The benefits of even limited reading instruction for developing good spoken language are emphasised.

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Teaching children with Down syndrome to read

Social development includes social interactive skills with children and adults, social understanding and empathy, friendships, play and leisure skills, personal and social independence and socially appropriate behaviour. Each of these areas of development is discussed, drawing on the available research literature. Social understanding, empathy and social interactive skills are strengths for children and adults with Down syndrome, which can be built on throughout life to enhance their social inclusion and quality of life. The opportunity to establish friendships may be affected by social independence and by speech and language and cognitive delay. Parents and teachers need to think about ways of increasing the friendship opportunities of children during primary school and teenage years. The importance of friendships with both typically developing peers and peers with similar disabilities is stressed, as is the need to develop play, leisure and independence skills. Most children and teenagers with Down syndrome have age-appropriate social behaviour, but some children do develop difficult behaviours which cause family stress and affect social and educational inclusion. Information on the types of behaviour which may cause concern is included and attention is drawn to the high incidence of sleep difficulties as they influence day time behaviour. Strategies for encouraging age-appropriate behaviour are discussed and ways of preventing and changing difficult behaviours are outlined.

Social development for individuals with Down syndrome - An overview

The aims of this study were to investigate the relationship between numerical and general ability and the contribution that receptive language makes to numerical ability in children with Down syndrome. Sixteen children with Down syndrome were tested on the following measures: two nonstandardised tests of numerical ability, two standardised numerical tests, two measures of receptive language and an IQ scale. Only one of the sixteen children attained a score on the IQ measure so the relationship between general and numerical ability in this population could not be assessed. All four numerical measures significantly correlated (positively) with each other, and receptive grammar (but not vocabulary) was found to significantly correlate (positively) to numerical skills. Details of the children's performance on the two main numerical measures under investigation are presented.

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Gillian Bird

Papers

A comparison of mainstream and special education for teenagers with Down syndrome: implications for parents and teachers.

Investigating the literacy, language and memory skills of children with Down syndrome

Teaching children with Down syndrome to read

Social development for individuals with Down syndrome - An overview

Numerical ability, general ability and language in children with Down syndrome