Supporting active engagement of adults with intellectual disabilities in lifestyle modification interventions: a realist evidence synthesis of what works, for whom, in what context and why.

BACKGROUND: Lifestyle modification interventions for adults with intellectual disabilities have had, to date, mixed effectiveness. This study aimed to understand how lifestyle modification interventions for adults with intellectual disabilities work, for whom they work and in what circumstances. METHODS: A realist evidence synthesis was conducted that incorporated input from adults with intellectual disabilities and expert researchers. Following the development of an initial programme theory based on key literature and input from people with lived experience and academics working in this field, five major databases (MEDLINE, EMBASE, CINAHL, PsycINFO and ASSIA) and clinical trial repositories were systematically searched. Data from 79 studies were synthesised to develop context, mechanism and outcome configurations (CMOCs). RESULTS: The contexts and mechanisms identified related to the ability of adults with intellectual disabilities to actively take part in the intervention, which in turn contributes to what works, for whom and in what circumstances. The included CMOCs related to support involvement, negotiating the balance between autonomy and behaviour change, fostering social connectedness and fun, accessibility and suitability of intervention strategies and delivery and broader behavioural pathways to lifestyle change. It is also essential to work with people with lived experiences when developing and evaluating interventions. CONCLUSIONS: Future lifestyle interventions research should be participatory in nature, and accessible data collection methods should also be explored as a way of including people with severe and profound intellectual disabilities in research. More emphasis should be given to the broader benefits of lifestyle change, such as opportunities for social interaction and connectedness.

Lifestyle modification interventions for adults with intellectual disabilities: systematic review and meta-analysis at intervention and component levels.

BACKGROUND: Adults with intellectual disabilities (IDs) are susceptible to multiple health risk behaviours such as alcohol consumption, smoking, low physical activity, sedentary behaviour and poor diet. Lifestyle modification interventions can prevent or reduce negative health consequences caused by these behaviours. We aim to determine the effectiveness of lifestyle modification interventions and their components in targeting health risk behaviours in adults with IDs. METHODS: A systematic review and meta-analysis were conducted. Electronic databases, clinical trial registries, grey literature and citations of systematic reviews and included studies were searched in January 2021 (updated February 2022). Randomised controlled trials and non-randomised controlled trials targeting alcohol consumption, smoking, low physical activity, sedentary behaviours and poor diet in adults (aged ≥ 18 years) with ID were included. Meta-analysis was conducted at the intervention level (pairwise and network meta-analysis) and the component-level (component network meta-analysis). Studies were coded using Michie's 19-item theory coding scheme and 94-item behaviour change taxonomies. Risk of bias was assessed using the Cochrane Risk of Bias (ROB) Version 2 and Risk of Bias in Non-randomised Studies of Interventions (ROBINS-I). The study involved a patient and public involvement (PPI) group, including people with lived experience, who contributed extensively by shaping the methodology, providing valuable insights in interpreting results and organising of dissemination events. RESULTS: Our literature search identified 12 180 articles, of which 80 studies with 4805 participants were included in the review. The complexity of lifestyle modification intervention was dismantled by identifying six core components that influenced outcomes. Interventions targeting single or multiple health risk behaviours could have a single or combination of multiple core-components. Interventions (2 RCTS; 4 non-RCTs; 228 participants) targeting alcohol consumption and smoking behaviour were effective but based on limited evidence. Similarly, interventions targeting low physical activity only (16 RCTs; 17 non-RCTs; 1413 participants) or multiple behaviours (low physical activity only, sedentary behaviours and poor diet) (17 RCTs; 24 non-RCTs; 3164 participants) yielded mixed effectiveness in outcomes. Most interventions targeting low physical activity only or multiple behaviours generated positive effects on various outcomes while some interventions led to no change or worsened outcomes, which could be attributed to the presence of a single core-component or a combination of similar core components in interventions. The intervention-level meta-analysis for weight management outcomes showed that none of the interventions were associated with a statistically significant change in outcomes when compared with treatment-as-usual and each other. Interventions with core-components combination of energy deficit diet, aerobic exercise and behaviour change techniques showed the highest weight loss [mean difference (MD) = -3.61, 95% credible interval (CrI) -9.68 to 1.95] and those with core-components combination dietary advice and aerobic exercise showed a weight gain (MD 0.94, 95% CrI -3.93 to 4.91). Similar findings were found with the component network meta-analysis for which additional components were identified. Most studies had a high and moderate risk of bias. Various theories and behaviour change techniques were used in intervention development and adaptation. CONCLUSION: Our systematic review is the first to comprehensively explore lifestyle modification interventions targeting a range of single and multiple health risk behaviours in adults with ID, co-produced with people with lived experience. It has practical implications for future research as it highlights the importance of mixed-methods research in understanding lifestyle modification interventions and the need for population-specific improvements in the field (e.g., tailored interventions, development of evaluation instruments or tools, use of rigorous research methodologies and comprehensive reporting frameworks). Wide dissemination of related knowledge and the involvement of PPI groups, including people with lived experience, will help future researchers design interventions that consider the unique needs, desires and abilities of people with ID.

A proposal of rehabilitative approach in the rare disease "De Barsy Syndrome": case report.

De Barsy syndrome is an autosomal recessive condition characterized by an progeroid appearance with distinctive facial features and cutis laxa. Ophthalmological, orthopedic, and neurological anomalies are generally also present. This syndrome is rare and the complex therapeutic management, from a surgical but also rehabilitative point of view, has not been recognized. The aim of this paper is to describe a possible rehabilitative protocol, after an orthopedic surgical treatment, in a child with De Barsy Syndrome. A 6-year-old boy was born with a congenital bilateral hip dysplasia associated with bilateral congenital foot deformity (vertical talus). Moreover, he showed stereotypic dyskinetic movements and psychomotor delay with cognitive impairment and absent language; the sitting position was maintained with orthoses to support the trunk control and the standing position was not acquired. He was treated with pinstripe knee-highs for the foot and double nappy for the hips. At 19 months old, he underwent a two stage surgical approach for a bilateral pronated valgus foot with severe talonavicular subluxation. Satisfactory hip range of motion was achieved by conservative treatment alone. Afterwards, for the foot laxity and the flat-pronated foot corrective shoes were prescribed. The main rehabilitative goals were: attention improvement, visual exploration for foot-eye and hand-eye coordination, encourage the essential prerequisites of language, controlling the upright position using support, improving hip-knee-foot relationship, improving load transfer between the right and left sides of the body, and bimanual coordination. The rehabilitation process lasted six months, three times a week, for a time from 30 minutes to 60 minutes per session. The results were encouraging and the patient acquired the possibility of sitting with the indicated postural system, the possibility of assuming an upright position and taking a few steps with the aid of rollator with a postural stabilization system for the pelvis.

Growing up with AAC in the digital age: a longitudinal profile of communication across contexts from toddler to teen.

Smart technology (e.g., smartphones, smartwatches, tablets) and the age of information have transformed our society and changed the lives of individuals who rely on assistive technology. This study provides a detailed description of an adolescent growing up in the digital age using augmentative and alternative communication (AAC). It documents the participant's development across language, cognitive, and social domains from ages 2- to 15-years-old, and explores how changes in AAC technology and contextual factors contributed to broad-based outcomes associated with AAC use. In general, results from standardized assessments show growth or stability across domains from ages 2-15. Data from a parent interview provides a narrative description of AAC device use, AAC interventions, and school and family environments. Despite communicative challenges, the participant leveraged advances in AAC technology to develop communicative competence and creatively used his smart devices and the Internet to interact with friends both online and in person.

"Moving on" through the locked ward system for women with intellectual disabilities.

BACKGROUND: The move to community support for all people with intellectual disabilities is an aspiration with international significance. In this article, we draw on rich accounts from women with intellectual disabilities detained under the Mental Health Act (E&W) 1983 and staff at an National Health Service secure setting in England to explore how "moving on" is defined and perceived. METHODS: The study reports on an ethnographic study using the field-notes and the 26 semi-structured interviews with detained women and staff on three wards. RESULTS: We first explore staff conceptions of moving on, which include behavioural change and utilizing coping strategies. Then, we discuss the areas of analysis that women discussed: taking back responsibility, success in arranged relationships, acceptance of regime and resistance to progression. CONCLUSION: The concepts of moving on were not determined by the women but by the service. We recommend further research which explores women's own rehabilitation requirements.

Identifying Needs-Based Groupings Among People Accessing Intellectual Disability Services.

There is increasing emphasis on needs-led service provision for people with intellectual disability (ID). This study outlines the statistical cluster analysis of clinical data from 1,692 individuals accessing secondary care ID services in the United Kingdom (U.K.) Using objective needs assessment data from a newly developed ID assessment tool, six clusters were identified. These had clinical face validity and were validated using six concurrently (but independently) rated tools. In keeping with previous studies, the clusters varied in terms of overall level of need as well as specific clinical features (autism spectrum disorder, mental health problems, challenging behaviors and physical health conditions). More work is now needed to further develop these clusters and explore their utility for planning, commissioning and optimizing needs-led services.

[Timely consideration of future care; advance care planning for people with intellectual disabilities]. / Tijdig nadenken over toekomstige zorg.

People with intellectual disabilities (IDs) are often unable to decide for themselves regarding complex medical decisions, and need assistance from representatives, often next-of-kin. People with IDs are often frail. This frailty is characterized on the one hand by health problems, on the other hand by significant limitations in both intellectual functioning and in adaptive behaviour. In this group of people, when compared to the general population, the principles of palliative care are applicable more often and over a longer period. Advance care planning should be considered not only at the end of life, but at each stage where decisions have to be made that may affect quality of life. In this article, we present three patient cases to illustrate the complexity of the process and the commitment of representatives and other key stakeholders.

An open-label proof-of-concept study of intrathecal autologous bone marrow mononuclear cell transplantation in intellectual disability.

BACKGROUND: The underlying pathophysiology in intellectual disability (ID) involves abnormalities in dendritic branching and connectivity of the neuronal network. This limits the ability of the brain to process information. Conceptually, cellular therapy through its neurorestorative and neuroregenerative properties can counteract these pathogenetic mechanisms and improve neuronal connectivity. This improved networking should exhibit as clinical efficacy in patients with ID. METHODS: To assess the safety and efficacy of cellular therapy in patients with ID, we conducted an open-label proof-of-concept study from October 2011 to December 2015. Patients were divided into two groups: intervention group (n = 29) and rehabilitation group (n = 29). The intervention group underwent cellular transplantation consisting of intrathecal administration of autologous bone marrow mononuclear cells and standard neurorehabilitation. The rehabilitation group underwent only standard neurorehabilitation. The results of the symptomatic outcomes were compared between the two groups. In the intervention group analysis, the outcome measures used were the intelligence quotient (IQ) and the Wee Functional Independence Measure (Wee-FIM). To compare the pre-intervention and post-intervention results, statistical analysis was done using Wilcoxon's matched-pairs test for Wee-FIM scores and McNemar's test for symptomatic improvements and IQ. The effect of age and severity of the disorder were assessed for their impact on the outcome of intervention. Positron emission tomography-computed tomography (PET-CT) brain scan was used as a monitoring tool to study effects of the intervention. Adverse events were monitored for the safety of cellular therapy. RESULTS: On symptomatic analysis, greater improvements were seen in the intervention group as compared to the rehabilitation group. In the intervention group, the symptomatic improvements, IQ and Wee-FIM were statistically significant. A significantly better outcome of the intervention was found in the paediatric age group (<18 years) and patients with milder severity of ID. Repeat PET-CT scan in three patients of the intervention group showed improved metabolism in the frontal, parietal cortex, thalamus, mesial temporal structures and cerebellum. No major adverse events were witnessed. CONCLUSIONS: Cellular transplantation with neurorehabilitation is safe and effective for the treatment of underlying brain deficits in ID. TRIAL REGISTRATION: ClinicalTrials.gov NCT02245724. Registered 12 September 2014.

Consent to care of persons with intellectual disability in Quebec: from vulnerability to capability / Consentimiento para el cuidado de las personas con discapacidad intelectual en Quebec: desde la vulnerabilidad hasta la capacidad

Abstract: Persons with an intellectual disability (ID) who interact with the Quebec health and social services system are faced with major decisions regarding the care they are offered. As consent to care derives from the fundamental right of all persons to personal inviolability and to autonomous decision making, they therefore have the right to accept or refuse any and all health and psychosocial care proposed. However, as free and informed consent to care must be given by an able person, the situation becomes somewhat more complicated whereas persons with ID are concerned. This article presents reflections on the challenges and issues relative to these persons' consent to health and psychosocial care.

Resumen: Las personas con discapacidad intelectual (ID) que interactúan con el sistema de salud y los servicios sociales de Quebec se enfrentan a decisiones importantes sobre la atención que se les brinda. Dado que el consentimiento a la atención se deriva del derecho fundamental de todas las personas a la integridad personal y a la toma de decisiones autónomas, éstas tienen el derecho de aceptar o rechazar cualquier atención de salud y psicosocial que se les proponga. Sin embargo, como el consentimiento libre e informado a la atención debe ser dado por una persona apta, la situación se vuelve más complicada en las personas con ID. Este artículo presenta reflexiones sobre los desafíos y temas relativos al consentimiento de estas personas hacia la salud y la atención psicosocial.

Interventions to promote physical activity for adults with intellectual disabilities / Intervenciones para promover la actividad física para adultos con discapacidad intelectual

Abstract: Objective: To describe interventions designed to promote physical activity for adults with intellectual disabilities and the effects on overall physical activity levels and on health outcomes. Materials and methods: A systematic review of eight databases until January 31, 2015 identified 383 citations. The inclusion criteria were: a) the study sample consisted of adults with intellectual disabilities, b) the study implemented an intervention to initiate, increase, or maintain physical activity, and c) quantitative or qualitative data were used to report the effectiveness of the intervention. Six articles from the 383 citations met this criterion. Results: Three studies resulted in significant increases in physical activity behaviour; however well-controlled trials designed to improve weight status by increasing physical activity did not produce significant effects. Conclusion: Overall, the results indicate that interventions to increase physical activity should simultaneously target the individual with intellectual disability as well as their proximal environment over a sustained period of time.

Resumen: Objetivo: Describir las intervenciones diseñadas para promover la actividad física para adultos con discapacidad intelectual y los efectos en los niveles de actividad física en general y en los resultados de salud. Material y métodos: Una revisión sistemática de ocho bases de datos hasta el 31 de enero de 2015 identificó 383 citas. Los criterios de inclusión fueron: a) los participantes del estudio fueron adultos con discapacidad intelectual; b) el estudio implementó una intervención para iniciar, aumentar o mantener la actividad física; c) se usaron datos cuantitativos o cualitativos para informar la efectividad de la intervención. Seis artículos de 383 cumplieron con los criterios. Resultados: Tres estudios resultaron en aumentos significativos en conductas de actividad física; sin embargo, los ensayos controlados diseñados para mejorar el peso corporal al aumentar la actividad física no produjeron efectos significativos. Conclusión: En general, los resultados indican que las intervenciones para aumentar la actividad física deben dirigirse simultáneamente al individuo con discapacidad intelectual, así como su entorno próximo durante un periodo de tiempo sostenido.

Interventions to promote physical activity for youth with intellectual disabilities / Intervenciones para promover la actividad física para jóvenes con discapacidad intelectual

Abstract: Objective: To describe interventions designed to promote physical activity for youth with intellectual disabilities. Materials and methods: A systematic review of nine databases until January 31, 2015 identified 213 citations. The inclusion criteria were: a) the study sample consisted of youth with intellectual disabilities, b) the study implemented an intervention to initiate, increase, or maintain physical activity, and c) quantitative or qualitative data were used to report the effectiveness of the intervention. Eleven articles from the 213 citations met this criterion. Results: Nine studies reported significant increases in physical activity behavior. Conclusions: Conclusions cannot be made regarding intervention components that impacted outcome variables, if the observed effects were specifically due to the intervention or if interventions could be maintained long-term. To advance the knowledge base in this area, a concerted effort should be made to increase rigor in study conceptualization and research design.

Resumen: Objetivo: Describir las intervenciones diseñadas para promover la actividad física para jóvenes con discapacidad intelectual. Material y métodos: Una revisión sistemática de nueve bases de datos hasta el 31 de enero de 2015 identificó 213 citas. Los criterios de inclusión fueron: a) la muestra del estudio consistió en jóvenes con discapacidad intelectual, b) el estudio implementado fue una intervención para iniciar, aumentar o mantener la actividad física y datos c) cuantitativos o cualitativos se utilizaron para informar la efectividad de la intervención. Once artículos de 213 citas cumplen este criterio. Resultados. Nueve estudios informaron aumentos significativos en el comportamiento de la actividad física. Conclusión: No se pueden establecer conclusiones con respecto a los componentes de intervención variables de resultado, considerando si los efectos observados fueron específicamente debido a la intervención o intervenciones podrían mantenerse a largo plazo. Para avanzar en la base de conocimientos en esta área, se necesita un esfuerzo concertado para aumentar el rigor en el estudio unívoco.

Atividades lúdicas no atendimento multi e interdisciplinar para crianças com deficiência / Leisure activities in multi and interdisciplinary care for children with disabilities / Actividades lúdicas en la atención multi e interdisciplinaria para niños con discapacidad

O objetivo da pesquisa foi analisar as atividades lúdicas utilizadas, pela equipe multi e inter-disciplinar, na reabilitação de crianças com deficiência em uma instituição de saúde estadual de Santa Catarina. Os dados foram coletados a partir de entrevista semiestruturada e de obser-vações sistemáticas e analisados pela técnica de análise de conteúdo. Foram identificados co-mo potenciais desdobramentos lúdicos: brinquedos, jogos e brincadeiras, englobando regras explícitas ou implícitas, bem como suas características. Notou-se que as relações estabeleci-das se mostraram imprescindíveis para a concretização dos atendimentos e dos objetivos tera-pêuticos.

The objective of this research was to analyze the ludic activities used, by the multi and inter-disciplinary team, in the rehabilitation of children with disabilities in a health state institution in Santa Catarina. To collect data, semi-structured interviews and systematic observations were used. Data analysis occurred through technical content analysis. It was identified as po-tential ludic developments: toys, games and child?s play that involved explicit or implicit rules and their characteristics. It was noticed that the relations established were crucial to the concretization of the work and the therapeutic objectives.

El objetivo de la investigación fue analizar las actividades lúdicas utilizadas, por el equipo multidisciplinario e interdisciplinario, en la rehabilitación de niños con deficiencia en una institución de salud estatal de Santa Catarina. Los datos fueron colectados a partir de entrevis-ta semiestructurada y observaciones sistemáticas y, analizados por la técnica análisis de con-tenido. Fueron identificados como potenciales desdoblamientos lúdicos: juguetes, juegos y recreaciones, englobando las reglas explícitas o implícitas, así como sus características. Se observó que las relaciones establecidas se mostraron imprescindibles para la concretización de los atendimientos y de los objetivos terapéuticos.

Atenção à saúde ocular de crianças com alterações no desenvolvimento em serviços de intervenção precoce: barreiras e facilitadores / Eye health attention of children with developmental disorders in early intervention services: barriers and facilitators

RESUMO Objetivo: Identificar fatores que influenciam na detecção precoce de deficiência visual e o início da intervenção precoce de crianças com alterações no desenvolvimento. Métodos: O estudo constituiu-se de levantamento, exploratório e descritivo, que contou com a aplicação de questionários com representantes institucionais, profissionais da equipe dos serviços de intervenção precoce e mães ou cuidadores das crianças atendidas. Os dados receberam tratamento estatístico através dos softwares Sistema de Análise Estatística SAS 9.3, Wolfram Mathematica e Microsoft Excel.A amostra constituiu-se de 434 sujeitos (19 representantes institucionais, 142 profissionais dos serviços e 273 mães/cuidadores das crianças atendidas). Resultados: A análise dos resultados revelou valores estatísticos de p-valor=0,0119 para a realização do teste do olhinho no que se refere ao início da intervenção precoce. A mãe recebe orientação quanto ao desenvolvimento da visão que obteve valores de p-valor=0,0106 para início da intervenção oportuna e valores de p-valor=0,0061 para primeira consulta ao oftalmologista. Conclusão: Realizar o teste do olhinho constituiu-se fator facilitador para o início da intervenção precoce e ter uma deficiência exclusivamente visual e frequentar instituição privada como barreira.A entrada tardia em serviço de intervenção precoce afeta negativamente a idade da primeira consulta oftalmológica. A mãe recebe orientação quanto ao desenvolvimento da visão que revelou-se fator facilitador para a primeira consulta ao oftalmologista e para início da intervenção oportuna. O campo da saúde ocular constitui-se demanda da saúde pública e requer ações e programas educativos direcionados aos familiares, profissionais e gestores institucionais.

ABSTRACT Objective: To identify factors that influence on the early detection of visual impairment and in early intervention onset for children with developmental disorders. Methods: The study consisted of a exploratory and descriptive survey, which included the use of questionnaires with institutional representatives, professional team of early intervention and mothers or caregivers of children served in these services. The data received statistical analysis through software SAS Statistical Analysis System 9.3, Wolfram Mathematica and Microsoft Excel. The sample consisted of 434 subjects (19 institutional representatives, 142 professionals of the early intervention services and 273 mothers/ caregivers of children served). Results: The results showed statistical values of p=0.0119 for the realization of eye test with regard to the beginning of early intervention. The mother receive guidance on the development of vision obtained values of p-value=0.0106 for early intervention start and values of p=0.0061 for the first visit to the ophtalmologist. Conclusion: Realise the eye test constitutes as a facilitating factor for the onset of early intervention and have an exclusively visual impairment and attend private institution as a barrier. Late entry into early intervention service adversely affects the age of first ophthalmologic consultation.The mother receive guidance on the development of vision showed as a facilitating factor for the first visit to the ophtalmologist and start of timely intervention.The field of eye health constitutes as public health demand and requires attention to actions and educational programs directed to families, professionals and institutional managers who provide services to children.

Benefits of a Culturally Tailored Health Promotion Program for Latino Youth With Disabilities and Their Families.

Little research is available about youth with disabilities, who experience numerous inequalities in health outcomes compared with youth without disabilities. Youth with disabilities experience many environmental and attitudinal barriers in maintaining healthy lifestyles, which put them at risk for obesity. Strong evidence has suggested that obesity rates are higher among youth with disabilities than among their nondisabled peers. The purpose of this study was to implement and examine the benefits of a culturally tailored healthy lifestyles program for Latino youth with disabilities and their families. Several cultural adaptations were made to align with the target population's cultural norms. Seventeen Latino families identified 67 behaviors they wanted to change or new habits they wanted to establish. The postassessment data showed that several family routines improved, and families reported engaging in many of the healthy habits they had identified for themselves. Implications of culturally appropriate and accessible programming are discussed.

Effectiveness of a walking programme to support adults with intellectual disabilities to increase physical activity: walk well cluster-randomised controlled trial.

BACKGROUND: Programs to change health behaviours have been identified as one way to reduce health inequalities experienced by disadvantaged groups. The objective of this study was to examine the effectiveness of a behaviour change programme to increase walking and reduce sedentary behaviour of adults with intellectual disabilities. METHODS: We used a cluster randomised controlled design and recruited participants over 18 years old and not regularly involved in physical activity from intellectual disabilities community-based organisations. Assessments were carried out blind to allocation. Clusters of participants were randomly allocated to the Walk Well program or a 12-week waiting list control. Walk Well consisted of three face-to-face physical activity consultations incorporating behaviour change techniques, written resources for participants and carers, and an individualised, structured walking programme. The primary outcome measured with accelerometers was change in mean step count per day between baseline and 12 weeks. Secondary outcomes included percentage time per day sedentary and in moderate-vigorous physical activity (MVPA), body mass index (BMI), and subjective well being. RESULTS: One hundred two participants in 50 clusters were randomised. 82 (80.4%) participants completed the primary outcome. 66.7% of participants lived in the most deprived quintile on the Scottish Index of Multiple Deprivation. At baseline, participants walked 4780 (standard deviation 2432) steps per day, spent 65.5% (standard deviation 10.9) of time sedentary and 59% percent had a body mass in the obesity range. After the walking programme, the difference between mean counts of the Walk Well and control group was 69.5 steps per day [95% confidence interval (CI) -1054 to 1193.3]. There were no significant between group differences in percentage time sedentary 1.6% (95% CI -2.984 to 6.102), percentage time in MVPA 0.3% (95% CI -0.7 to 1.3), BMI -0.2 kg/m(2) (95% CI -0.8 to 0.4) or subjective well-being 0.3 (95% CI -0.9 to 1.5). CONCLUSIONS: This is the first published trial of a walking program for adults with intellectual disabilities. Positively changing physical activity and sedentary behaviours may require more intensive programmes or upstream approaches to address the multiple social disadvantages experienced by adults with intellectual disabilities. Since participants spent the majority of their time sedentary, home-based programmes to reduce sitting time may be a viable health improvement approach. TRIAL REGISTRATION: Current Controlled Trials ISRCTN50494254.

Intervención neuropsicológica en un caso de retardo mental asociado a síndrome de Down / Neuropsychological Rehabilitation on mental retardation associated with Down's syndrome

Dentro de la población afectada de retraso mental, el síndrome de Down (SD) constituyen uno de los grupos más estudiados y es una de las causas genéticas más comunes, ocurriendo con gran frecuencia. Esta condición es el resultado de una anormalidad de los cromosomas, esta desviación en el desarrollo de las células resulta en la producción de 47 cromosomas en lugar de 46 que se consideran normales. El cromosoma adicional cambia totalmente el desarrollo ordenado del cuerpo y cerebro, produciendo alteraciones evidentes tanto físicas como cognitivas que afectan la capacidad adaptativa. El objetivo de este artículo es presentar el caso de una paciente con SD y mostrar los resultados de la aplicación de un programa de intervención neuropsicológica centrado en el fortalecimiento del factor primario, como eje para facilitar el funcionamiento sistémico. Se presenta la valoración previa a la intervención, el contenido del programa de intervención con los ejemplos de ejecuciones de la paciente, una valoración posterior y un análisis comparativo. La discusión se centra en la importancia de la identificación del mecanismo neurofisiológico primario que desorganiza la actividad, como eje fundamental para lograr efectos positivos en actividades de tipo voluntario mediante el lenguaje como regulador...

Within the affected population in mental retardation, Down syndrome (DS) is one of the most studied and is one of the most common genetic causes, occurring with great frequency. This condition is the result of an abnormality of chromosomes, a deviation in the development of cells results in production of 47 chromosomes instead of 46 which are considered normal. The extra chromosome changes the orderly development of the body and brain, causing both physical and obvious alterations that affect cognitive adaptive capacity. The aim of this paper is to present the case of a patient with SD and display the results of the application of a neuropsychological intervention program focused on strengthening the primary factor, as an axis to facilitate systemic functioning. It comes pre assessment, the content of the intervention program with examples of executions of the patient, after a review and comparative analysis. The discussion focuses on the importance of identifying the primary neurophysiological mechanism that disrupts the activity, as the linchpin for achieving positive effects on activities of a volunteer through language as a regulator...

Outpatient physical therapy utilization for children and adolescents with intellectual disabilities in Taiwan: a population-based nationwide study.

This study analyzed the utilization and utilization determinants of outpatient physical therapy (PT) among children and adolescents with intellectual disabilities (ID) in Taiwan. A cross-sectional study was conducted to analyze 2007 national health insurance (NHI) claim data from 35,802 eighteen-year-old and younger persons with intellectual disabilities. A total of 3944 (11.02%) claimants received outpatient physical therapy. Variables that affected PT utilization included age, residence urbanization level, ID level, copayment status and major co-morbidity. The average annual PT visit frequency was 25.4 ± 33.0; pre-school children, claimants suffering from catastrophic disease and ID co-occurring with cerebral palsy had a higher mean cost per visit. Age, ID level, copayment status and co-morbidity were factors that influenced expenditure. Pre-school children, males, individuals who resided in the lowest urbanization areas and individuals with a catastrophic disease tended to use hospital services. The point prevalence of epilepsy and cerebral palsy were 12.10% and 19.80%, respectively. Despite the NHI program and government regulations to provide special services, the use of physical therapy for children and adolescents with intellectual disabilities was low, and the utilization decreased as the subjects aged.

Using research evidence to inform public policy decisions.

The application of scientific data in the development and implementation of sound public policy is a well-established practice, but there appears to be less consensus on the nature of the strategies that can and should be used to incorporate research data into policy decisions. This paper describes the promise and the challenges of using research evidence to inform public policy. Most specifically, we demonstrate how the application of a large-scale data set, the National Core Indicators (NCI), can be systematically used to drive state-level policy decisions, and we describe a case example of one state's application of NCI data to make significant changes to its Intellectual and Developmental Disabilities waiver. The need for continued research in this area is highlighted.

A multi-component universal intervention to improve diet and physical activity among adults with intellectual disabilities in community residences: a cluster randomised controlled trial.

People with ID have an increased risk for unhealthy diets, physical inactivity and weight disturbances. The aim of the current study was to investigate the effectiveness of a novel and complex intervention to improve diet and physical activity, targeting both caregivers and residents, in community residences for people with ID. A three component intervention based on Social Cognitive Theory was developed, including: (1) appointment of a health ambassador in each community residence attending network meetings, (2) a study circle for caregivers, and (3) a health course for the residents. The intervention lasted for 12-16 months and allowed for some local tailoring. A cluster randomised controlled trial, randomised at residence level, was conducted to evaluate the effects of the intervention. Thirty community residences for people with mild or moderate ID in Stockholm County, Sweden, were included. A total of 130 participants, 74 women and 56 men aged 20-66 years, entered, and 129 participants completed the study. The primary outcome was physical activity, measured by pedometry. Secondary outcomes were BMI, waist circumference, dietary quality measured by digital photography, satisfaction with life assessed with a scale, and work routines assessed with a questionnaire. Outcomes were related to intervention fidelity. A positive intervention effect was found on physical activity, with an average increase of 1608 steps/day among participants in the intervention group (P=0.045). The effect size was 0.29 (Cohen's d). The type of residence was found to be an effect moderator. A positive intervention effect was found as well on work routines, with an average increase of 7.1 percentage points on a self-assessment scale among residences in the intervention group (P=0.016). No significant effects were found on BMI, waist circumference, dietary quality, or satisfaction with life. In conclusion, this innovative intervention was effective in improving physical activity and work routines. It is likely that even greater effects could be achieved by improvements in implementation strategies, leading to higher fidelity.