Global, regional, and national disability-adjusted life-years (DALYs) for 315 diseases and injuries and healthy life expectancy (HALE), 1990–2015 : a systematic analysis for the Global Burden of Disease Study 2015

Promoting oral health in adults with learning disability

Introduction: It is complex to define learning disabilities, there is no single universal definition used; there are different interpretations and definitions used for learning disabilities in different countries and communities. Primarily, the term “learning disability” sometimes used as “learning difficulties” is a term widely used in UK. There are various types and degree of severity of learning disabilities depending upon the extent of disorder. Though different definitions used all over the world, its types and classification coupled with their health and oral health needs are discussed in this review. Objectives:  To review the background literature on definitions of learning disabilities and health needs of this population.  To review literature on individual clinical preventive intervention to determine the effectiveness in promoting oral health amongst adults in learning disabilities.  To review literature in relation to community based preventive dental measures.  To determine the interventions in this areas are appropriate to support policy and practice and if these interventions establish good evidence to suggest that the oral health needs of adults with learning disabilities are met or not.  To make recommendations in implementing future preventive oral health interventions for adults with learning disabilities. Methodology: It was develop a comprehensive narrative synthesis of previously published literature from different sources and summarizes the whole research in a particular area identifying gap of knowledge. It provides a broad perspective of a subject and supports continuing education. It also is directed to inform policy and further research. It is a qualitative type of research with a broad question and critical analysis of literature published in books, article and journals. The research question evaluated on PICOS criteria is: Effectiveness of preventive dental interventions in adults with learning disabilities. The research question clearly defines the PICOS i.e. participants, interventions, comparison, outcome and study design. The Cochrane database of systematic reviews (CDSR), Database of Abstracts of Reviews of effects (DARE) through York University and National institute of Health and Clinical Excellence (NICE) was searched to identify need of this review. There was no literature review found on the preventive dental interventions found hence, justifying this review. The guidance used in this review is from York University and methods opted for search of literature is based on the following: Type of participants, interventions, outcome measure, studies and search. The review of literature; author search; systematic and narrative reviews, through the following electronic databases via UFP library services: Pub-Med, Medline, EMBASE, CINHAL, Google scholar; Science Direct; Social and Medicine. A comprehensive search of all available literature from 1990-2015, including systematic reviews, policy documents and some guideline documents was done. Internet resource used to access; Department of Health, World Health Organization, Disability World, Disability Rights Commission, the Stationery office, MENCAP, Australian Learning Disability Association. The literature search was carried out with single word, combined words and phrases, authors' names and the title of literature search. Results: It is primarily looking at the oral health interventions available for adults with learning disabilities in clinical settings and the community measures observed over a period of 25 years 1990-2015. There were 7of the clinical intervention studies and one community based intervention study was added in this review. Conclusion: There is a gap of knowledge identified in not having ample research in the area of preventive dental interventions in adults with learning or intellectual disabilities and there is a need of more research, studies need to be of a better quality and a special consideration is required in the community settings where maintenance of oral hygiene for this vulnerable group of society is hugely dependent on their caregivers. Though, the policy and guideline directs on the preventive dental interventions of adults with LD there still a gap evident in understanding and implication of the guidance in practice by the dental and care support team. Understanding learning disabilities and to identify their behavior, compliance and oral health needs is paramount for all professionals working with or for them at each level.

Intellectual disability, coarse face, relative macrocephaly, and cerebellar hypotrophy in two sisters

We report on two Portuguese sisters with a very similar phenotype characterized by severe intellectual disability, absent speech, relative macrocephaly, coarse face, cerebellar hypotrophy, and severe ataxia. Additional common features include increased thickness of the cranial vault, delayed dental eruption, talipes equino-varus, clinodactyly, and camptodactyly of the fifth finger. The older sister has retinal dystrophy and the younger sister has short stature. Their parents are consanguineous. We suggest this condition constitutes a previously unreported autosomal recessive entity.

Mutations in SNX14 cause a distinctive autosomal-recessive cerebellar ataxia and intellectual disability syndrome

Intellectual disability and cerebellar atrophy occur together in a large number of genetic conditions and are frequently associated with microcephaly and/or epilepsy. Here we report the identification of causal mutations in Sorting Nexin 14 (SNX14) found in seven affected individuals from three unrelated consanguineous families who presented with recessively inherited moderate-severe intellectual disability, cerebellar ataxia, early-onset cerebellar atrophy, sensorineural hearing loss, and the distinctive association of progressively coarsening facial features, relative macrocephaly, and the absence of seizures. We used homozygosity mapping and whole-exome sequencing to identify a homozygous nonsense mutation and an in-frame multiexon deletion in two families. A homozygous splice site mutation was identified by Sanger sequencing of SNX14 in a third family, selected purely by phenotypic similarity. This discovery confirms that these characteristic features represent a distinct and recognizable syndrome. SNX14 encodes a cellular protein containing Phox (PX) and regulator of G protein signaling (RGS) domains. Weighted gene coexpression network analysis predicts that SNX14 is highly coexpressed with genes involved in cellular protein metabolism and vesicle-mediated transport. All three mutations either directly affected the PX domain or diminished SNX14 levels, implicating a loss of normal cellular function. This manifested as increased cytoplasmic vacuolation as observed in cultured fibroblasts. Our findings indicate an essential role for SNX14 in neural development and function, particularly in development and maturation of the cerebellum.

THE CONTRIBUTION OF THE GEOGRAPHY OF DISABILITY TO THE DEVELOPMENT OF ‘ACCESSIBLE TOURISM’

The article presents an outline of the evolution of the geography of disability (since the 1930s) taking into account significant issues in the creation of theoretical foundations as well as practical action in ‘accessible tourism’. It may be considered a review. Based on an analysis of literature, the first section presents a definition of ‘accessible tourism’ and the development of the geography of disability, the result of which is the geographical model of disability. The second section is a synthetic presentation of the effect of geographical research on the development of theoretical accessible tourism concepts and their implications in practice. The final conclusions highlight the need to identify the level of detail in universal design principles applied to buildings, spaces, services, which are to fulfil the criteria of accessibility for people with various types of disability.

Essays on the Effects of Social Insurance for Disability

This dissertation examines how social insurance, family support and work capacity enhance individuals' economic well-being following significant health and income shocks. I first examine the extent to which the liquidity-enhancing effects of Worker's Compensation (WC) benefits outweigh the moral hazard costs. Analyzing administrative data from Oregon, I estimate a hazard model exploiting variation in the timing and size of a retroactive lump-sum WC payment to decompose the elasticity of claim duration with respect to benefits into the elasticity with respect to an increase in cash on hand, and a decrease in the opportunity cost of missing work. I find that the liquidity effect accounts for 60 to 65 percent of the increase in claim duration among lower-wage workers, but less than half of the increase for higher earners. Using the framework from Chetty (2008), I conclude that the insurance value of WC exceeds the distortionary cost, and increasing the benefit level could increase social welfare. Next, I investigate how government-provided disability insurance (DI) interacts with private transfers to disabled individuals from their grown children. Using the Health and Retirement Study, I estimate a fixed effects, difference in differences regression to compare transfers between DI recipients and two control groups: rejected applicants and a reweighted sample of disabled non-applicants. I find that DI reduces the probability of receiving a transfer by no more than 3 percentage points, or 10 percent. Additional analysis reveals that DI could increase the probability of receiving a transfer in cases where children had limited prior information about the disability, suggesting that DI could send a welfare-improving information signal. Finally, Zachary Morris and I examine how a functional assessment could complement medical evaluations in determining eligibility for disability benefits and in targeting return to work interventions. We analyze claimants' self-reported functional capacity in a survey of current DI beneficiaries to estimate the share of disability claimants able to do work-related activity. We estimate that 13 percent of current DI beneficiaries are capable of work-related activity. Furthermore, other characteristics of these higher-functioning beneficiaries are positively correlated with employment, making them an appropriate target for return to work interventions.

From the human rights-based approach to an ecological approach on how to achieve successful inclusion in international disability education

The barriers that people with disabilities face around the world are not only inherent to the limitations resulting from the disability itself, but, more importantly, these barriers rest with the societal technologies of exclusion. Using a mixed methodology approach, I conduct a quest to revealing several societal factors that limit full participation of people with disabilities in their communities, which will contribute to understanding and developing a more comprehensive framework for full inclusion of people with disabilities into the society. First, I conduct a multiple regression analysis to seek whether there is a statistical relationship between the national level of development, the level of democratization, and the level of education within a country’s population on one hand, and expressed concern for and preparedness to improve the quality of life for people of disabilities on another hand. The results from the quantitative methodology reveal that people without disabilities are more prepared to take care of people with disabilities when the level of development of the country is higher, when the people have more freedom of expression and hold the government accountable for its actions, and when the level of corruption is under control. However, a greater concern for the well-being of people with disabilities is correlated with a high level of country development, a decreased value of political stability and absence of violence, a decreased level of government effectiveness, and a greater level of law enforcement. None of the dependent variables are significantly correlated with the level of education from a given country. Then, I delve into an interpretive analysis to understand multiple factors that contribute to the construction of attitudes and practices towards people with disabilities. In doing this, I build upon the four main principles outlined by the United Nations as strongly recommended to be embedded in all international programmes: (1) identification of claims of human rights and the corresponding obligations of governments, hence, I assess and analyze disability rights in education, looking at United Nation, United States, and European Union Perspectives Educational Rights Provisions for People with Disabilities (Ch. 3); (2) estimated capacity of individuals to claim their rights and of governments to fulfill their obligations, hence, I look at the people with disabilities as rights-holders and duty-bearers and discuss the importance of investing in special capital in the context of global development (Ch. 4); (3) programmes monitor and evaluate the outcomes and the processes under the auspices of human rights standards, hence, I look at the importance of evaluating the UN World Programme of Action Concerning People with Disabilities from multiple perspectives, as an example of why and how to monitor and evaluate educational human rights outcomes and processes (Ch. 5); and (4) programming should reflect the recommendations of international human rights bodies and mechanisms, hence, I focus on programming that fosters development of the capacity of people with disabilities, that is, planning for an ecology of disabilities and ecoducation for people with disabilities (Ch. 6). Results from both methodologies converge to a certain point, and they further complement each other. One common result for the two methodologies employed is that disability is an evolving concept when viewed in a broader context, which integrates the four spaces that the ecological framework incorporates. Another common result is that factors such as economic, social, legal, political, and natural resources and contexts contribute to the health, education and employment opportunities, and to the overall well-being of people with disabilities. The ecological framework sees all these factors from a meta-systemic perspective, where bi-directional interactions are expected and desired, and also from a human rights point of view, where the inherent value of people is upheld at its highest standard.

Chronic low back pain, chronic disability at work, chronic management issues.

International audience

Using Needs Assessment to Understand Continuing Disability in Patients with Enduring Mental Illness. Implications for Considerations of Service Development

Particular strengths of the MRC Needs for Care Assessment Schedule have been used to investigate the treatment status of patients with persistent psychiatric disability in ways that other needs assessment tools are unable to. One hundred and seventy-nine such patients from three settings; a private sector psychiatric hospital, two public sector day hospitals situated in the same town, and a high security hospital, were found to have a high level of need. Although there were differences between settings, overall these needs were well met in all three. The high level of persistent disability found amongst these patients could not be attributed to failure on the part of those treating them to use the best available methods, or to failures to comply or engage with treatment on the patient's part. In some two thirds of instances persistent disability was best explained by the fact that even the most suitable available treatments have to be considered only partially effective.

Adaptação e validação para a cultura portuguesa da Late-Life Function and Disability Instrument (LLFDI)

Introdução:O envelhecimento pressupõe alterações no organismo, sendo fundamental a medição das limitações da funcionalidade e da incapacidade na execução de tarefas individuais e sociais por parte dos idosos. As guidelines da ACSM enfatizam que os idosos obtêm benefícios na saúde com a realização de atividade física regular. Objetivo: Adaptar e validar para a cultura portuguesa a Late-Life Function and Disability Instrument (LLFDI). Material e Métodos: A versão portuguesa foi obtida através de um processo de metodologia sequencial. Para avaliar a validade e fiabilidade, esta versão foi administrada a 619 idosos (72±9). Destes, 77 foram submetidos a uma intervenção de fisioterapia com base em dois programas de exercícios, para determinar o poder de resposta. Resultados: Após obtenção da equivalência semântica e de conteúdo, a versão portuguesa da LLFDI demonstrou valores elevados de reprodutibilidade (CCI_função > 0,8 e CCI_incapacidade > 0,7) e níveis bastantes aceitáveis de consistência interna (α Cronbach > 0,82). As correlações obtidas entre a LLFDI e o MOS SF-36 são moderadas a altas. A análise fatorial confirmatória demonstra um modelo ajustado para a componente função (relações positivas e muito fortes) e incapacidade (relações no limiar da aceitabilidade). O Poder de resposta de 4 semanas, demonstrou valores de ESS <0,30 (função) e <0,28 (incapacidade). Os valores de RMS encontram-se entre 0,40 e 0,72 (função) e entre 0,27 e 0,59 (incapacidade). Conclusões: A versão portuguesa da LLFDI demonstrou valores aceitáveis de validade e fiabilidade, revelando valores baixos de poder de resposta.

Depression and physical disability in chronic pain: The mediation role of emotional intelligence and acceptance

Emotional intelligence (EI) and acceptance have previously been identified as potential factors in the adjustment to chronic pain (CP). This study examined the associations between CP experiences, depression, and physical disability. It further investigated the mediating effect of EI and acceptance in the relationship between CP experiences, depression, and physical disability and how this changes with the duration of the CP. Method: A cross-sectional design, employing validated questionnaires, was used to measure pain experience, physical disability, depression, EI, and acceptance in 133 CP patients. Results: All variables were found to be significantly associated in theoretically predicted ways. The relationship between CP experiences and depression was mediated by both factors, as high EI and acceptance promoted a decreased influence of pain on depression. By contrast, the relationship between CP experiences and physical disability was mediated by acceptance, but not by EI. Further, the temporal stability analysis of this mediation model showed that long-term CP patients are better able to make use of these factors. Conclusions: The relationship between the experience of pain and depression or physical disability seems to be significantly mediated by factors such as EI and acceptance. This study lends further support to the development of more encompassing models that take both control and non-control variables into account when conceptualising the adjustment to CP. Theoretical and clinical implications are discussed.

ABLE-BODIED WOMANHOOD: DISABILITY AND CORPOREALLY EXCLUSIONARY NARRATIVES IN BLACK AND WHITE WOMEN’S RIGHTS DISCOURSES, 1832-1932

This project is a feminist disability rhetorical analysis of US black and white women’s rights movements from 1832-1932. Guided by Disability and Feminist Theory, it works to identify the presence and use of patterns of disability tropes in women’s rights discourses. From Lucretia Coffin Mott to Sojourner Truth, Elizabeth Cady Stanton to Mary Church Terrell, and Charlotte Perkins Gilman to Addie Hunton, this project interrogates the rhetorical work of dominant narratives and lesser known voices in women’s rights discourses. I argue that early black and white women’s rights advocates often utilized and repeated a disability rhetoric that relied on disability metaphor, narrative prosthesis, and corporeally exclusionary narratives in order to construct definitions of womanhood. Their insistence on cognitive ability as a marker of “fitness” and “ability” provided the foundation for rights arguments based on ableist assumptions of autonomy and citizenship. I also argue that this use of disability rhetoric relied on and furthered a pervasive ableist ideology present not only in many of these movements, but in US society. In the process, US black and white women’s rights discourses have continually elided women with disabilities from women’s rights discourses because their bodies (physically, cognitively, and/or psychologically) did not meet the ableist prerequisites set for claiming women’s rights during this time period.

A novel mutation of AFG3L2 might cause dominant optic atrophy in patients with mild intellectual disability

International audience

Pain, Disability, and Art: A Response to Verpaelst

Réponse à - travail créatif / Response to - Creative work