Risk of late effects of treatment in children newly diagnosed with standard-risk acute lymphoblastic leukaemia: a report from the Childhood Cancer Survivor Study cohort

BACKGROUND Treatment of patients with paediatric acute lymphoblastic leukaemia has evolved such that the risk of late effects in survivors treated in accordance with contemporary protocols could be different from that noted in those treated decades ago. We aimed to estimate the risk of late effects in children with standard-risk acute lymphoblastic leukaemia treated with contemporary protocols. METHODS We used data from similarly treated members of the Childhood Cancer Survivor Study cohort. The Childhood Cancer Survivor Study is a multicentre, North American study of 5-year survivors of childhood cancer diagnosed between 1970 and 1986. We included cohort members if they were aged 1·0-9·9 years at the time of diagnosis of acute lymphoblastic leukaemia and had received treatment consistent with contemporary standard-risk protocols for acute lymphoblastic leukaemia. We calculated mortality rates and standardised mortality ratios, stratified by sex and survival time, after diagnosis of acute lymphoblastic leukaemia. We calculated standardised incidence ratios and absolute excess risk for subsequent neoplasms with age-specific, sex-specific, and calendar-year-specific rates from the Surveillance, Epidemiology and End Results Program. Outcomes were compared with a sibling cohort and the general US population. FINDINGS We included 556 (13%) of 4329 cohort members treated for acute lymphoblastic leukaemia. Median follow-up of the survivors from 5 years after diagnosis was 18·4 years (range 0·0-33·0). 28 (5%) of 556 participants had died (standardised mortality ratio 3·5, 95% CI 2·3-5·0). 16 (57%) deaths were due to causes other than recurrence of acute lymphoblastic leukaemia. Six (1%) survivors developed a subsequent malignant neoplasm (standardised incidence ratio 2·6, 95% CI 1·0-5·7). 107 participants (95% CI 81-193) in each group would need to be followed-up for 1 year to observe one extra chronic health disorder in the survivor group compared with the sibling group. 415 participants (376-939) in each group would need to be followed-up for 1 year to observe one extra severe, life-threatening, or fatal disorder in the group of survivors. Survivors did not differ from siblings in their educational attainment, rate of marriage, or independent living. INTERPRETATION The prevalence of adverse long-term outcomes in children treated for standard risk acute lymphoblastic leukaemia according to contemporary protocols is low, but regular care from a knowledgeable primary-care practitioner is warranted. FUNDING National Cancer Institute, American Lebanese-Syrian Associated Charities, Swiss Cancer Research.

Policy analysis of the Americans with Disabilities Act of 1990 and federal funding concerning barrier-free playgrounds

The Americans with Disabilities Act (ADA) of 1990 was created to prohibit discrimination against disabled persons in our society. The goal of the ADA as a comprehensive civil rights law is to "ensure equal opportunity and complete participation, independent living and economic self-sufficiency" for disabled persons (U.S. Department of Justice, 2008). As part of Title II and III of the ADA, states and local governments are required to provide people with disabilities the same chance to engage in and benefit from all programs and services including recreational facilities and activities as every other citizen. Recreational facilities and related structures must comply with accessibility standards when creating new structures or renovating existing ones. Through a systematic literature review of articles accessed through online databases, articles relating to children with disabilities, their quality of life and their experience gained through play were reviewed, analyzed and synthesized. Additionally, the ADA's Final Rule regarding accessible playgrounds was evaluated through a descriptive analysis which yielded the following five components relating the importance of barrier-free playgrounds to children with disabilities: appropriate dimensions for children, integration of the play area, variety of activity and stimulation, availability of accessible play structures to communities, and financial feasibility. These components were used as evaluation criteria to investigate the degree to which the ADA's Final Rule document met these criteria. An evaluation of two federal funding sources, the Urban Parks and Recreation Renewal Program (UPARR) and the Land and Water Conservation Fund (LWCF), was also conducted which revealed three components relating the two programs' ability to support the realization of the ADA's Final Rule which included: current budget for the program, ability of local communities to attain funds, and level of ADA compliance required to receive funding. Majority of the evaluation of the Final Rule concluded it be adequate in development of barrier-free playgrounds although there are some portions of the guidelines that would benefit from further elucidation. Both funding programs were concluded to not adequately support the development of barrier-free playgrounds and therefore it was recommended that their funding be re-instated or increased as necessary. ^

Jóvenes mujeres con discapacidad en escuelas públicas de la provincia de Buenos Aires : Problematizando los procesos de inclusión y exclusión educativa

El presente estudio tiene como objetivo general problematizar los procesos de inclusión y exclusión escolar de jóvenes mujeres con discapacidad en escuelas públicas del sistema de educación tanto común como especial de la ciudad de La Plata y el Gran La Plata, provincia de Buenos Aires. Las mujeres con discapacidad constituyen uno de los grupos más oprimidos a lo largo de la historia, prueba de ello han sido los obstáculos y limitaciones en su proceso de escolarización. Las investigaciones sobre este grupo tanto en educación como en los estudios de género y de discapacidad resultan todavía escasas, por lo que consideramos relevante el abordaje de esta temática. Desde una perspectiva foucaultiana y feminista de la discapacidad procuraremos comprender e interpretar el punto de vista de las mujeres con discapacidad a fin de lo cual hemos recreado herramientas metodológicas específicas que nos permitan acceder a las voces de las jóvenes. La investigación describe al menos tres formas de incumplimiento del derecho a la educación inclusiva y la vida independiente en la escolarización de las mujeres con discapacidad: exclusión, segregación e integración (o exclusión en la inclusión). Asimismo, analiza diferentes formas en las que la escuela, en oportunidades en alianza con las familias de las jóvenes con discapacidad, actúa, de forma opresiva y deshumanizante, negándoles el derecho a la educación y la vida independiente

Jóvenes mujeres con discapacidad en escuelas públicas de la provincia de Buenos Aires : Problematizando los procesos de inclusión y exclusión educativa

El presente estudio tiene como objetivo general problematizar los procesos de inclusión y exclusión escolar de jóvenes mujeres con discapacidad en escuelas públicas del sistema de educación tanto común como especial de la ciudad de La Plata y el Gran La Plata, provincia de Buenos Aires. Las mujeres con discapacidad constituyen uno de los grupos más oprimidos a lo largo de la historia, prueba de ello han sido los obstáculos y limitaciones en su proceso de escolarización. Las investigaciones sobre este grupo tanto en educación como en los estudios de género y de discapacidad resultan todavía escasas, por lo que consideramos relevante el abordaje de esta temática. Desde una perspectiva foucaultiana y feminista de la discapacidad procuraremos comprender e interpretar el punto de vista de las mujeres con discapacidad a fin de lo cual hemos recreado herramientas metodológicas específicas que nos permitan acceder a las voces de las jóvenes. La investigación describe al menos tres formas de incumplimiento del derecho a la educación inclusiva y la vida independiente en la escolarización de las mujeres con discapacidad: exclusión, segregación e integración (o exclusión en la inclusión). Asimismo, analiza diferentes formas en las que la escuela, en oportunidades en alianza con las familias de las jóvenes con discapacidad, actúa, de forma opresiva y deshumanizante, negándoles el derecho a la educación y la vida independiente

Jóvenes mujeres con discapacidad en escuelas públicas de la provincia de Buenos Aires : Problematizando los procesos de inclusión y exclusión educativa

El presente estudio tiene como objetivo general problematizar los procesos de inclusión y exclusión escolar de jóvenes mujeres con discapacidad en escuelas públicas del sistema de educación tanto común como especial de la ciudad de La Plata y el Gran La Plata, provincia de Buenos Aires. Las mujeres con discapacidad constituyen uno de los grupos más oprimidos a lo largo de la historia, prueba de ello han sido los obstáculos y limitaciones en su proceso de escolarización. Las investigaciones sobre este grupo tanto en educación como en los estudios de género y de discapacidad resultan todavía escasas, por lo que consideramos relevante el abordaje de esta temática. Desde una perspectiva foucaultiana y feminista de la discapacidad procuraremos comprender e interpretar el punto de vista de las mujeres con discapacidad a fin de lo cual hemos recreado herramientas metodológicas específicas que nos permitan acceder a las voces de las jóvenes. La investigación describe al menos tres formas de incumplimiento del derecho a la educación inclusiva y la vida independiente en la escolarización de las mujeres con discapacidad: exclusión, segregación e integración (o exclusión en la inclusión). Asimismo, analiza diferentes formas en las que la escuela, en oportunidades en alianza con las familias de las jóvenes con discapacidad, actúa, de forma opresiva y deshumanizante, negándoles el derecho a la educación y la vida independiente

Entornos de ayuda a la vida independiente de personas mayores sobre servicios de redes de próxima generación

El progresivo envejecimiento de la población está produciendo una elevada demanda de servicios socio‐asistenciales por parte de las personas mayores para mantener su vida independiente y el consiguiente “envejecimiento activo”. La iniciativa Ambient Assisted Living (AAL) promueve el “envejecimiento activo” a través de las Tecnologías de la Información y las Comunicaciones (TIC) y es en ella donde se centrará el trabajo de esta tesis doctoral. Una característica fundamental de los servicios AAL es su adaptación y personalización a las características y preferencias del usuario y su contexto. Así, el paradigma “context awareness” presenta una gran relevancia en la provisión de servicios AAL y en el soporte a la vida independiente de las personas mayores. Concretamente, la utilización de ontologías permite crear modelos de usuarios y contexto que pueden ser utilizadas para los mecanismos de razonamiento incluidos en los servicios context‐aware. Por otra parte, los usuarios actualmente precisan acceder a un conjunto de servicios desde cualquier red de acceso y desde cualquier dispositivo. Las redes de próxima generación (Next Generation Networks‐NGN) lo hacen posible pues ofrecen una convergencia dispositivo‐red‐servicio. La tecnología IMS (IP Multimedia Subsystem) es una arquitectura que implementa el paradigma NGN y ofrece una serie de servicios de red genéricos llamados servicios habilitadores o enablers que pueden ser reutilizados en cualquier aplicación, soportando mecanismos de interoperabilidad entre aplicaciones y permitiendo un desarrollo robusto, rápido y sencillo. Además, los servicios enablers permiten mecanismos de gestión de la información de usuario para realizar una provisión adaptada del servicio en función de la información del estado del usuario. El objetivo de esta tesis doctoral se centra en establecer un marco de convergencia entre estos dos campos diseñando y desarrollando un conjunto de servicios enablers soportados en una arquitectura IMS implementada para soportar la provisión de aplicaciones AAL bajo el paradigma context‐awareness y la triple convergencia reddispositivo‐ servicio cubriendo así las necesidades y requisitos de las personas mayores. Entre las aportaciones de la presente tesis se destaca la realización de un modelo de plataforma servicios AAL, denominado Residencia Virtual Asistiva, para su provisión en el domicilio de la persona mayor, así como la propuesta de implementación de sus servicios a través de servicios enablers. Por otra parte se define una ontología destinada a modelar servicios AAL así como sus usuarios (personas mayores) para lograr una provisión personalizada y adaptada de servicios AAL. Esta ontología se ha implementado a través del servicio de presencia de la arquitectura IMS para poder crear perfiles de usuario y así poder realizar dicha provisión personalizada. Además, se desarrolla una aplicación de teleconsulta, como ejemplo de servicio AAL, que utiliza una serie de servicios enablers desarrollados para ofrecer funcionalidades avanzadas a la aplicación. Bajo el paradigma contex‐awareness se ha desarrollado y evaluado técnicamente un servicio enabler para ofrecer soporte a la movilidad y a la independencia de las personas mayores con deterioro cognitivo que sufren episodios de desorientación espacial. ABSTRACT The progressive ageing of the population is making elderly people demand sociohealthcare services to maintain an independent living and therefore an “active ageing”. The initiative Ambient Assisted Living (AAL), on which the current PhD thesis is focused, promotes the “active ageing” by means of Information and Communication Technologies (ICT). Essential features of AAL services are the adaptation and personalization to the user’s characteristics and preferences as well as user’s context. Thus, the “context‐awareness” paradigm implies a great importance in the AAL service provision and the elderly independent living support. In particular, the usage of ontologies allows creating user and contexts models to be employed in the reasoning mechanism of context‐aware services. On the other hand, users currently require accessing to a set of services from anywhere and any device. Next‐Generation Networks (NGN) support this need by offering a service‐network‐device convergence. The IP Multimedia Subsystem (IMS) technology is an architecture that implements the NGN paradigm and offers a generic network services know as service enabler which can be reused by any application supporting application interoperability mechanism as well as allowing a simple, fast and robust application development. Furthermore, the service enablers offer user’s information management procedures to achieve and adapt service provision considering the user’s status. The objective of this PhD thesis is focused on establishing a convergence framework between these two previous fields by designing and developing a group of service enablers that will be deployed in an IMS architecture. The enablers developed will support the AAL applications provision from the context‐awareness paradigm and service‐network‐device convergence in order to cover the elderly people’s requirements and needs. Among the contributions achieved in this PhD thesis, the definition of an AAL platform service model, named as “Assited Virtual Nursing Home”, for being deployed in the older adult home is emphasised. In addition, a proposal of service enablers to support the AAL service defined in the model is made. Otherwise, an ontology is defined to model AAL services as well as their users with the aim at achieve a personalized and adapted AAL service. This ontology has been implemented by means of the IMS service presence in order to create users profiles to be used in the personalized AAL services. As an example of AAL service, a teleconsulting application has been developed to employ a group of service enablers developed using a set of advanced functionalities. Considering the context‐paradigm, a service enabler has been developed and technologically evaluated to support the mobility and independence of elderly people with mild cognitive impairment who suffers spatial disorientation episodes.

Integration of multisensor hybrid reasoners to support personal autonomy in the smart home.

The deployment of the Ambient Intelligence (AmI) paradigm requires designing and integrating user-centered smart environments to assist people in their daily life activities. This research paper details an integration and validation of multiple heterogeneous sensors with hybrid reasoners that support decision making in order to monitor personal and environmental data at a smart home in a private way. The results innovate on knowledge-based platforms, distributed sensors, connected objects, accessibility and authentication methods to promote independent living for elderly people. TALISMAN+, the AmI framework deployed, integrates four subsystems in the smart home: (i) a mobile biomedical telemonitoring platform to provide elderly patients with continuous disease management; (ii) an integration middleware that allows context capture from heterogeneous sensors to program environment¿s reaction; (iii) a vision system for intelligent monitoring of daily activities in the home; and (iv) an ontologies-based integrated reasoning platform to trigger local actions and manage private information in the smart home. The framework was integrated in two real running environments, the UPM Accessible Digital Home and MetalTIC house, and successfully validated by five experts in home care, elderly people and personal autonomy.

Near-hanging as presenting to hospitals in Queensland: Recommendations for practice

Near-hanging is an increasing presentation to hospitals in Australasia. We reviewed the clinical management and outcome of these patients as they presented to public hospitals in Queensland. A retrospective clinical record audit was made at five public hospitals between 1991 and 2000. Of 161 patients enrolled, 82% were male, 8% were Indigenous and 10% had made a previous hanging attempt. Chronic medical illnesses were documented in 11% and previous psychiatric disorders in 42%. Of the 38 patients with a Glasgow Coma Scale score (GCS) of 3 on arrival at hospital, 32% returned to independent living and 63% died. Fifty two patients received CPR, of whom 46% had an independent functional outcome. Independent predictors of mortality were a GCS on hospital arrival of 3 (AOR 150, CI 95% 12.4-1818, P

Mild cognitive decline. A position statement of the Cognitive Decline Group of the European Innovation Partnership for Active and Healthy Ageing (EIPAHA)

Introduction Mild cognitive impairment (MCI) is a term used to describe a level of decline in cognition which is seen as an intermediate stage between normal ageing and dementia, and which many consider to be a prodromal stage of neurodegeneration that may become dementia. That is, it is perceived as a high risk level of cognitive change. The increasing burden of dementia in our society, but also our increasing understanding of its risk factors and potential interventions, require diligent management of MCI in order to find strategies that produce effective prevention of dementia. Aim To update knowledge regarding mild cognitive impairment, and to bring together and appraise evidence about the main features of clinical interest: definitions, prevalence and stability, risk factors, screening, and management and intervention. Methods Literature review and consensus of expert opinion. Results and conclusion MCI describes a level of impairment in which deteriorating cognitive functions still allow for reasonable independent living, including some compensatory strategies. While there is evidence for some early risk factors, there is still a need to more precisely delineate and distinguish early manifestations of frank dementia from cognitive impairment that is less likely to progress to dementia, and furthermore to develop improved prospective evidence for positive response to intervention. An important limitation derives from the scarcity of studies that take MCI as an endpoint. Strategies for effective management suffer from the same limitation, since most studies have focused on dementia. Behavioural changes may represent the most cost-effective approach.

Transition from community dwelling to retirement village in older adults:cognitive functioning and psychological health outcomes

Supported living and retirement villages are becoming a significant option for older adults with impairments, with independence concerns or for forward planning in older age, but evidence as to psychological benefits for residents is sparse. This study examined the hypothesis that the multi-component advantages of moving into a supported and physically and socially accessible “extra care” independent living environment will impact on psychological and functioning measures. Using an observational longitudinal design, 161 new residents were assessed initially and three months later, in comparison to 33 older adults staying in their original homes. Initial group differences were apparent but some reduced after three months. Residents showed improvement in depression, perceived health, aspects of cognitive function, and reduced functional limitations, while controls showed increased functional limitations (worsening). Ability to recall specific autobiographical memories, known to be related to social-problem solving, depression and functioning in social relationships, predicted change in communication limitations, and cognitive change predicted changes in recreational limitations. Change in anxiety and memory predicted change in depression. Findings suggest that older adults with independent living concerns who move to an independent but supported environment can show significant benefits in psychological outcomes and reduction in perceived impact of health on functional limitations in a short period. Targets for focussed rehabilitation are indicated, but findings also validate development of untargeted general supportive environments.

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

More young adults (YAs) with life limiting conditions (LLC) are surviving into adulthood as earlier diagnosis and improved medical management in pediatric care lead to higher rates of survival for cancer, congenital heart and neuromuscular conditions. When these YAs leave pediatric care, they leave behind comprehensive and coordinated health, social and education services for uncoordinated adult systems, with limited access to palliative services they received in pediatric care.

YAs with LLCs will benefit from a public health palliative approach to care. This approach better matches their chronic disease trajectories of a series of declining plateaus over a period of months to years, punctuated by unpredictable periodic crises. Public health palliative care is a blended provision of health care and community services based on evidence that health care is most effective and least expensive when offered in conjunction with a complement of services that reflects social determinants of health and well-being. For YAs with LLCs, these resources will support their health, social, vocational, independent living, and educational goals to maximize their opportunities in an abbreviated time frame.


The objectives of this workshop are to:

1. Provide an overview of the young adult population with palliative care needs.
2. Discuss current care of this population.
3. Highlight results from three recent projects to examine and address needs of this population.
4. Dialogue with audience about other programs, initiatives, or ideas to address the needs of this population.

We look forward to robust conversations and ideas from your practice and research.

Portland College: Mobile tech boosts student progression

Mobile and video technologies are being used to boost the confidence and employability of students with disabilities at Portland College - an independent specialist college for students aged 16 to 25, it provides educational opportunities and fosters independent living skills for students with physical or learning disabilities.

Somos o que comemos

Comunicação científica a convite.

Nutrição no idoso: contributo do projeto PERSSILAA

Apresentação sobre a nutrição no idoso, âmbito do prolecto PERSSILAA, Infraestrutura Personalizada Para a Vida Independente e o Envelhecimento Ativo.

PERSSILAA D3.4 - Recommendations for european guidelines

Comunicação científica a convite