Transitioning patients with developmental disabilities to adult care.

The pre-visit questionnaire, instructive videos, and Web resources detailed here can help you play a pivotal role in planning, commencing, and solidifying this transition.

Academy of Nutrition and Dietetics: Revised 2020 Standards of Practice and Standards of Professional Performance for Registered Dietitian Nutritionists (Competent, Proficient, and Expert) in Intellectual and Developmental Disabilities.

Intellectual and developmental disabilities (IDD) encompass both intellectual disabilities (ID) and developmental disabilities (DD). In 2016, 7.37 million people in the United States and 200 million worldwide were identified with an ID or DD. Approximately 1 in 6 (17.8%) children have been identified with a DD in the United States, which is up from 16.2% in 2009-2011. Globally, 52.9 million children from birth to 5 years of age have been identified with a DD. Registered dietitian nutritionists (RDNs) have an important role in the treatment of this population, as optimizing nutrition status improves cognition and quality of life. The Behavioral Health Nutrition Dietetic Practice Group, with guidance from the Academy of Nutrition and Dietetics Quality Management Committee, has revised the Standards of Practice (SOP) and Standards of Professional Performance (SOPP) for RDNs in Intellectual and Developmental Disabilities for 3 levels of practice-competent, proficient, and expert. The SOP uses the Nutrition Care Process and clinical workflow elements for care of individuals with an ID or DD. The SOPP describes 6 domains that focus on professionalism. Indicators outlined in the SOP and SOPP depict how these standards apply to practice. The SOP and SOPP are complementary resources for RDNs caring for individuals with an ID or DD. The SOP and SOPP are intended to be used by RDNs for self-evaluation to assure competent practice and for determining potential education and training needs for advancement to a higher practice level in a variety of settings.

Intensidades en la aplicación de tecnologías robóticas en la rehabilitación de las extremidades superiores tras un ictus: revisión sistemática de ensayos clínicos controlados aleatorizados / Intensities in the application of robotic technologies in upper extremity rehabilitation after a stroke: a systematic review of randomised controlled clinical trials

INTRODUCCIÓN: El ictus conlleva limitaciones a largo plazo en el uso de las extremidades superiores afectadas en la gran mayoría de los casos. Las tecnologías robóticas aportan resultados beneficiosos en rehabilitación motora, pero se desconocen los niveles óptimos de intensidad. OBJETIVOS: Revisar la literatura científica (últimos diez años) sobre terapias robóticas (grupo de intervención) en comparación con las terapias convencionales (grupo control) en la fase crónica del ictus y estudiar correlaciones entre las variables que caracterizan a las intervenciones y las variables de intensidad. Sujetos y métodos. Se realizó una revisión sistemática de ensayos clínicos controlados aleatorizados en PubMed, Web of Science, Cochrane Library y Google Scholar, con resultados valorados mediante la Fugl-Meyer Assessment-Upper Extremity Motor Score (mFMA-UE). La calidad metodológica se analizó mediante la escala Physiotherapy Evidence Database (PEDro). RESULTADOS: Se seleccionaron 13 estudios, de nivel de evidencia I (92% excelente). Se observan correlaciones positivas entre los minutos semanales y las mejoras en la mFMA-UE en el grupo control y el grupo de intervención, con mayor nivel de significación para este último. Se observan correlaciones negativas entre el número de meses desde la lesión y las mejoras en el grupo control y en el grupo de intervención. Se incluye una regresión exponencial, que ilustra diferencias entre el grupo control y el grupo de intervención en favor de éste. Se observa una correlación negativa entre la duración total y la cantidad de minutos semanales. CONCLUSIÓN: Se observan correlaciones significativas entre la intensidad (minutos semanales) y la mFMA-UE, con un mayor nivel de significación en el grupo de intervención

INTRODUCTION. In the vast majority of cases stroke entails long-term limitations in the use of the upper extremities that are affected. Robotic technologies provide beneficial results in motor rehabilitation, but the optimal levels of intensity are not known. AIMS. To review the scientific literature (over the last 10 years) on robotic therapies (intervention group) compared to conventional therapies (control group) in the chronic phase of stroke, and to study correlations between variables that characterise the interventions and intensity variables. SUBJECTS AND METHODS. A systematic review was conducted of randomised controlled clinical trials in PubMed, Web of Science, Cochrane Library and Google Scholar, with results assessed by the Fugl-Meyer Assessment-Upper Extremity Motor Score (mFMA-UE). The methodological quality was analysed using the Physiotherapy Evidence Database scale (PEDro). RESULTS. Thirteen studies from evidence level I (92%, excellent) were selected. Positive correlations between minutes per week and improvements in mFMA-UE are observed in the control group and in the intervention group, with a higher level of significance for the latter. Negative correlations are observed between the number of months since the lesion and improvements in the control and intervention groups. An exponential regression is included, which illustrates differences between the control group and the intervention group in favour of the latter. A negative correlation is observed between the total duration and the number of minutes per week. CONCLUSION. Significant correlations are observed between intensity (minutes per week) and mFMA-UE, with a higher level of significance in the intervention group

CSHCN with hearing difficulties: Disparities in access and quality of care.

BACKGROUND: Hearing difficulties (HD) affect a sizable minority of children in the United States and can have a significant impact on child development. Children with HD may face barriers around language development, communication abilities, learning, and social interactions, which in turn can affect multiple aspects of their lives. OBJECTIVE/HYPOTHESIS: Little is known about the extent to which children with HD have access to a system of care and we hypothesize that this population may experience significant unmet needs. METHODS: In this cross-sectional study, using bivariate and multivariable regression models, we analyzed data from the 2009/2010 National Survey of Children with Special Health Care Needs (NS-CSHCN). Selected survey items were used to assess health and healthcare characteristics of CSHCN with some level of HD (n = 2,315) compared to those without HD (n = 37,851). The study sample included 40,242 CSHCN aged 0-17 years, whose caregivers responded to the survey. RESULTS: Approximately 694,000 CSHCN in the U.S. were reported to have any level of HD, representing 6.3% of the CSHCN population. Compared to CSHCN without HD, those with HD were less likely to have access to a medical home, community services, or have adequate health insurance. CONCLUSIONS: Significant deficits in medical home access, adequate insurance, and accessibility of community-based services are evident for CSHCN with HD. Families having knowledge of how and when to access community services and partner with providers in their child's health care is important for the overall health and wellbeing of this subpopulation of CSHCN.

Primary care provider adherence to reproductive healthcare guidelines in adolescents and young adults with disabilities: A retrospective matched cohort study1.

PURPOSE: Assessing provider adherence to preventative sexual and reproductive healthcare guidelines in adolescents and young adults (AYA) patients with physical and intellectual disabilities (PWD). METHODS: Records of PWD (N= 42) age 12-26 receiving health maintenance between 01/01/11-12/31/16 were reviewed for: (1) initiation and completion of human papilloma virus (HPV) vaccination series, (2) initiation and completion of meningococcal vaccination, (3) screening for human immunodeficiency virus (HIV), and documentation of (4) sexual, (5) menstrual, and (6) pregnancy histories. Unaffected age and gender-matched patients provided comparison data (Comparison Cohort, CC). RESULTS: The mean age of both groups was 17.3 years ± 3.8 and 40.5% were female. There was no significant difference between groups regarding the completion of HPV or meningococcal vaccine series. Among those 15+ years of age, 7.1% of PWD and 28.6% of CC were screened for HIV (p= 0.04). Sexual history was documented in 19.0% of PWD versus 73.8% of CC (p< 0.001). Among females, menstrual regularity was recorded in 11.8% of PWD versus 47.1% of CC (p= 0.02) and pregnancy history in 0.0% of PWD versus 29.4% of CC (p= 0.04). CONCLUSIONS: Adherence to sexual health guidelines was suboptimal, and lower among PWD. Vaccination rates did not differ between the two groups.

Mapping first-line health care providers' roles, practices, and impacts on care for workers with compensable musculoskeletal disorders in four jurisdictions: A critical interpretive synthesis.

BACKGROUND: First-line health care providers are the primary access point for workers' benefits. However, little is known about their impact on quality of care and return-to-work. Our objective was to critically compare literature on the practices of first-line providers for workers with musculoskeletal injuries in Ontario and Quebec (Canada), Washington State (United States), and Victoria (Australia). METHODS: A critical interpretive synthesis of peer-reviewed scientific literature was conducted. The search across six databases yielded 59 relevant publications that were critically appraised. RESULTS: Three themes emerged: 1) how policies about first-line health care providers' modulate worker access to care, 2) how these providers' roles, practices, and training shape disability management, and 3) how the quality of care and disability outcomes are evaluated. CONCLUSIONS: First-line health care providers have a critical influence on workers' trajectories of care. A focus on their role while taking the complexity of the context into account will help orient future policy changes.

Examining determinants of lifestyle interventions targeting persons with intellectual disabilities supported by healthcare organizations: Usability of the Measurement Instrument for Determinants of Innovations.

BACKGROUND: Due to complex processes of implementation of innovations aimed at persons with intellectual disabilities in healthcare organizations, lifestyle interventions are not used as intended or not used at all. In order to provide insight into determinants influencing this implementation, this study aims to ascertain if the Measurement Instrument for Determinants of Innovations (MIDI) is useful for objectively evaluating implementation. METHOD: With semi-structured interviews, data concerning determinants of implementation of lifestyle interventions were aggregated. These data were compared to the determinants questioned in the MIDI. Adaptations to the MIDI were made in consultation with the author of the MIDI. RESULTS: All determinants of the MIDI, except for that concerning legislation and regulations, were represented in the interview data. Determinants not represented in the MIDI were the level of intellectual disabilities, suitability of materials and physical environment, multi-levelness of interventions and several persons who could be involved in the intervention, such as direct support persons (DSPs), a therapist or family, and the communication between these involved persons. CONCLUSION: The present authors suggested making adjustments to existing questions of the MIDI in order to improve usability for deployment in organizations that provide care to persons with intellectual disabilities. The adjustments need to be tested with other interventions.

"Getting ready for the adult world": how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being.

BACKGROUND: Spinal muscular atrophy (SMA) has profound implications across a lifetime for people with the condition and their families. Those affected need long-term multidisciplinary medical and supportive care to maintain functional mobility, independence and quality of life. Little is known about how adults with SMA experience healthcare, or the components of care perceived as important in promoting well-being. The purpose of this study was to use qualitative research methodology to explore the lived experiences of healthcare and wellbeing of adults with SMA. Purposive sampling was used to recruit adolescents and adults with SMA, their parents and partners. Face-to-face or telephone-based semi-structured interviews were recorded and analysed using inductive thematic analysis. RESULTS: Across a total of 25 interviews (19 people with SMA, 5 parents, 1 partner) many participants described disengagement from health services and major gaps in care throughout adulthood. Disengagement was attributed to the perceived low value of care, as well as pragmatic, financial and social barriers to navigating the complex healthcare system and accessing disability services. Adults with SMA valued healthcare services that set collaborative goals, and resources with a positive impact on their quality of life. Mental health care was highlighted as a major unmet need, particularly during times of fear and frustration in response to loss of function, social isolation, stigma, and questions of self-worth. Alongside this, participants reported resilience and pride in their coping approaches, particularly when supported by informal networks of family, friends and peers with SMA. CONCLUSIONS: These findings provide insight into the lived experiences, values and perspectives of adults with SMA and their carers, revealing major, ongoing unmet healthcare needs, despite many realising meaningful and productive lives. Findings indicate the necessity of accessible, patient- and family-centered multidisciplinary care clinics that address currently unmet physical and mental health needs. Understanding the lived experiences of people with SMA, particularly during times of transition, is critical to advancing health policy, practice and research. Future studies are needed to quantify the prevalence, burden and impact of mental health needs whilst also exploring potential supportive and therapeutic strategies.

Comprehensive preventive care assessments for adults with intellectual and developmental disabilities: Part 2: 2003 to 2014.

OBJECTIVE: To determine if there has been an increase in preventive care among adults with intellectual and developmental disabilities (IDD) as a result of the publication of the Canadian consensus guidelines on the care of adults with IDD in 2006 and 2011. DESIGN: Ecological study. SETTING: Ontario. PARTICIPANTS: The study group consisted of community-dwelling adults with IDD between the ages of 40 and 64 living in Ontario identified in 2009-2010 through administrative health and social services data. The comparison group consisted of a propensity-score-matched sample of the remaining Ontario population. MAIN OUTCOME MEASURES: A combined measure of a health examination or a Primary Care Quality Composite Score (PCQS) of 0.6 or greater, or both. Both measures were identified using administrative health data. RESULTS: Adults with IDD were 2.04% more likely to have had a health examination or a PCQS of 0.6 or greater before 2011-2012 and 1.70% less likely after 2011-2012. Adults without IDD were 1.03% more likely before 2011-2012 and 13.74% less likely after 2011-2012 to have had a health examination or a PCQS of 0.6 or greater. Male patients with IDD were 15.60% more likely and male patients without IDD were 7.39% less likely to have had a health examination or PCQS of 0.6 or greater compared with female patients. CONCLUSION: Despite the publication of the guidelines there has not been a corresponding increase in the uptake of the annual health examination or in the quality of preventive care among adults with IDD. More is required to reduce this documented inequity in care.

Improving the quality of primary care for adults with intellectual and developmental disabilities: Value of the periodic health examination.

OBJECTIVE: To implement a Health Check protocol for patients with intellectual and developmental disabilities (IDD) and assess outcomes. DESIGN: Retrospective chart review and staff survey. SETTING: Two Ontario family health teams. PARTICIPANTS: Of 276 patients with IDD identified, 139 received the Health Check (Health Check group). A convenience sample (N = 147) of clinical staff participated in the survey. MAIN OUTCOME MEASURES: The protocol included patient identification, invitation, and modified health examination. Chart review assessed completion of 8 preventive maneuvers, and clinical staff were surveyed on their comfort, knowledge, and skills in care of patients with IDD. Logistic regression analyses were used to compare outcomes for the Health Check and non-Health Check groups, adjusted for practice site. RESULTS: Documentation of blood pressure, weight, body mass index, and influenza vaccination was significantly higher (P < .001) in the Health Check group, exceeding 70% of patients. Screening rates were higher for mammograms (63% vs 54%), fecal occult blood testing (39% vs 23%), and diabetes testing (80% vs 61%), but not significantly so, and they were similar to general population rates. Papanicolaou test rates were low for both groups (34% vs 32%). Staff comfort and skills were rated significantly higher (P < .05) for those who performed the Health Check. Still, fewer than half thought they had the necessary skills and resources to care for patients with IDD. CONCLUSION: Performing the Health Check was associated with improved preventive care and staff experience. Wider implementation and evaluation is needed, along with protocol adjustments to provide more support to staff for this work.

"If I had been given that information back then": An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood.

BACKGROUND: Young people with cerebral palsy (CP) and their families have identified lack of information received during the transition to adulthood as a barrier to successful outcomes. To date, few studies have explored the information needs, preferences, timing, and method of provision from the perspective of individuals with CP. METHOD: The methodological approach to this qualitative study was interpretive description. Nine adults living with CP, between the ages of 20 and 40, were purposively recruited in Ontario, Canada, to explore, retrospectively, their information needs during the transition to adulthood. Participants completed a 1-hour interview that explored their experiences seeking and receiving information. Interviews were transcribed verbatim, and data were analysed to create a thematic description of adults' experiences with information. RESULTS: Three themes emerged: (a) "Recognizing and supporting information needs," which highlighted the importance of support systems to assist young people in receiving and seeking information throughout the transition; (b) "Getting creative," which highlighted strategies young people use when confronted with environmental barriers when seeking information; and (c) "Gaps and advice for the future," which highlighted the need for real-life opportunities, during the transition to adulthood, to experience some of the responsibilities of adult life. CONCLUSION: Clinicians assisting young people with CP need purposefully to foster knowledge and skills during the transition to adulthood. They should be not only providers of information but also enablers of opportunities for immersion in real-life experiences to prepare for adult life. It is important for young people to have the opportunity to discuss challenges and exchange information with their peers.

Recomendaciones a los Servicios Médicos de federaciones españolas unideportivas, para la inclusión de deportistas con discapacidad (segunda parte) / Recommendations to the Medical Services in Spanish federations by sport, for the inclusion of athletes with disabilities (second part)

La inclusión de las personas con discapacidad es un eje prioritario en las políticas de desarrollo social, tanto en España como en el resto del mundo, también en la práctica de las actividades físicas y deportivas, donde ya son un ejemplo extrapolable a otros ámbitos de la sociedad. Actualmente las Federaciones Deportivas Internacionales (unideportivas) están desarrollando sus procesos inclusivos para acoger a los deportistas con discapacidad de sus modalidades deportivas, este proceso ya se ha convertido en un hecho generalizado e irreversible a nivel deportivo mundial. También las federaciones deportivas españolas, tanto de deporte como las plurideportivas de personas con discapacidad han iniciado, a distintos niveles, este proceso inclusivo. Esta situación está siendo conducida por el Consejo Superior de Deporte y el Comité Paralímpico Español, proceso que ha de culminar con la incorporación, a estas federaciones nacionales por deporte, de todas las personas discapacitadas o no, que quieren practicar sus modalidades, en un sólo modelo organizativo. En su primera parte, "Recomendaciones a los Servicios Médicos de federaciones españolas unideportivas, para la inclusión de deportistas con discapacidad", ya se remarca que la estructura y organización Servicios Médicos Federativos (SMF) no debe ser ajena al proceso inclusivo y de adecuación en las estructuras federativas. Por lo cual, ahora, se completan el resto de acciones y adaptaciones necesarias y significativas, como en la fisioterapia, ortopedia y de ayudas técnicas, atención sanitaria, psicológica y también de adaptaciones estructurales de los SMF. Esta revisión, en conjunto, tiene como objetivo principal garantizar, a través de sus recomendaciones, unos servicios de calidad, que puedan ser ofrecidos en la misma medida a deportista con o sin discapacidad en igualdad de trato. Aportando recomendaciones y más conocimiento al proceso de inclusión en el deporte federado español, para que éste alcance el éxito, y pueda garantizar un buen servicio a todos sus deportistas, siguiendo los criterios más actuales de buenas prácticas inclusivas

The inclusion of people with disabilities is a priority axis in social development policies, both in Spain and in the rest of the world. Also, in practice of physical and sports activities, where they are already an example that can be extrapolate to other areas of the society. Currently the International Sports Federations (one-sport) are developing their inclusive processes to accommodate athletes with disabilities of their sport; this process has already become a widespread and irreversible worldwide sport movement. This situation is being conducted by the "Consejo Superior de Deportes" (Spanish Sport Council) and the Spanish Paralympic Committee, a process that must culminate with the incorporation, to these national federations by sport, of all people disabled or not, who want to practice their modalities, in a single sport organizational model. In its first part, "Recommendations to the Medical Services in Spanish federations by sport, for the inclusion of athletes with disabilities", it already pointed out that the structure and organization of Federative Medical Services (SMF) must not be alien to the inclusive process and adaptation in all the federative structures. Therefore, now, the rest of the necessary and significant actions and adaptations are complete, as in physiotherapy, orthopedics and technical aids, health care, psychology and structural adaptations of the SMF also. This review, as a whole, has as main objective to guarantee, through its recommendations, quality services, which can be offer in the same measure to athlete with or without disability in equal treatment. Providing recommendations and more knowledge to the process of inclusion in the federated Spanish sport, so that it reaches success, and can guarantee a good service to all its athletes, following the most current criteria of good inclusive practices

Determinantes sociales de la salud y discapacidad: actualizando el modelo de determinación / Social determinants of health and disability: updating the model for determination

Los determinantes sociales de la salud (DSS) son las condiciones en las que las personas se desarrollan. Dichas condiciones impactan en sus vidas, condición de salud y nivel de inclusión social. Acorde a la evolución conceptual y de comprensión de la discapacidad, resulta importante actualizar los DSS por sus amplias implicancias en la ejecución de intervenciones de salud en la población. Esta propuesta fundamenta la incorporación de la discapacidad en el modelo como un determinante estructural, dado que produciría el mismo fenómeno de inclusión/exclusión social de las personas, descrito en otros DSS estructurales. Esta propuesta promueve un espacio relevante en el diseño y la implementación de políticas públicas con el fin de mejorar las condiciones de la población y contribuir a la equidad social. Esto será un acto de reparación, justicia y cumplimiento de la Convención sobre los Derechos de las Personas con Discapacidad (AU)

Social determinants of health (SDH) are conditions in which people live. These conditions impact their lives, health status and social inclusion level. In line with the conceptual and comprehensive progression of disability, it is important to update SDH due to their broad implications in implementing health interventions in society. This proposal supports incorporating disability in the model as a structural determinant, as it would lead to the same social inclusion/exclusion of people described in other structural SDH. This proposal encourages giving importance to designing and implementing public policies to improve societal conditions and contribute to social equity. This will be an act of reparation, justice and fulfilment with the Convention on the Rights of Persons with Disabilities (AU)

Determinación de la situación de dependencia funcional. Revisión sobre los instrumentos de evaluación más utilizados / Determination upon functional dependence situation. Reviewing the most used evaluation tools

Introducción: la medición de la situación de dependencia es un acto fundamental para las diferentes administraciones públicas con competencias en el campo de la salud y de los servicios sociales, para así poder planificar de forma idónea las políticas encaminadas a la atención e intervención en este ámbito. Objetivo: el objetivo del presente trabajo es analizar los instrumentos de valoración de la situación de dependencia más utilizados en España, informando de su contenido y sus campos de aplicación más relevantes. Del mismo modo, conocer en qué se diferencian estas escalas de medida, del baremo de valoración de dependencia utilizado como puerta de acceso al Sistema para la Autonomía y Atención a la Dependencia. Método: este estudio se lleva a cabo mediante una revisión bibliográfica en las siguientes bases de datos: Dialnet, Scopus, SciELO y Fisterra.com. Conclusiones: Tras la pertinente revisión de la literatura existente, los resultados apuntan a que, a causa de la variabilidad de contextos en los que se enmarcan las situaciones de dependencia, existen una gran variedad de instrumentos de medida

Background: the measure of the dependence situation is a fundamental act for the different public administration, which are concerned with the health and also the social services; therefore appropriate way to plan the policies toward the assistance and procedure as well at this field. Objective: the aim of the present work is analyzing the most used valuation tools in Spain about the dependence situation. Reporting upon its content and its outstanding application fields is the goal. Knowing about the differences between these measurement scales, in relation to the dependence evaluation rate, is other goal as well. These scales are used to access to the System for Autonomy and Assistance to Dependence. Method: this study is made through a bibliographic review in the following database: Dialnet, Scopus, SciELO and Fisterra.com. Conclusion: after the appropriate reviewing of currently literature, the results indicate a wide variety of measure tools in spite of the fact that there are a huge variety of possible contexts inner dependence

Disability evaluation and functional capacity evaluation (FCE): Is Spain ready for FCE? Is FCE ready for Spain? / Evaluación de la discapacidad y evaluación de la capacidad funcional (ECF): ¿está España preparada para la ECF? ¿Está la ECF preparada para España?

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Efectos sobre el codo de la resección de la cabeza radial por fractura aislada de la cabeza del radio en pacientes jóvenes / Effects on the elbow of radial head resection following isolated radial head fracture in young patients

Fundamento: La resección de la cabeza radial ha sido un tratamiento muy utilizado en casos de fractura no reconstruible de la cabeza del radio; algunos autores impulsan el uso de prótesis de cabeza radial. El propósito de este trabajo fue evaluar el resultado a largo plazo de la exéresis de la cabeza del radio por fractura aislada y su repercusión radiológica y funcional a nivel del codo. Pacientes y método. Se han revisado de forma retrospectiva cuarenta y cuatro historias clínicas de pacientes con resección de la cabeza del radio por fractura aislada, sin lesiones asociadas, en pacientes menores de cuarenta años y con un seguimiento mínimo de quince años. Se ha valorado la presencia de dolor, movilidad, fuerza y estabilidad del codo y se ha comparado con el lado contralateral sano. El estudio radiológico recoge la presencia de artrosis, calcificaciones, acortamiento del muñón proximal y medición del ángulo de carga. Se ha utilizado el cuestionario Dishabilities of the Arm, Shoulder and Hand (DASH) para valorar el grado de discapacidad percibido por el paciente. Resultados: El grupo de estudio se compone de diez mujeres y treinta y cuatro varones, con una edad media en el momento de la fractura de 28,6 años (rango 15-40) y un tiempo de evolución o seguimiento medio de 28,5 años (rango 16-38). La afectación en el lado dominante fue en treinta casos (23 diestros y 7 zurdos). Treinta y nueve pacientes (88,6%) no tenían dolor a nivel del codo y en el resto era leve o moderado. La pérdida de movilidad y fuerza respecto al lado contralateral fue de 1,5% para flexo-extensión, 3,5% para prono-supinación, 7,9% de fuerza de flexión y 3,5% de fuerza de extensión del codo. Se encontraron cuatro casos de inestabilidad en valgo y dos posterolateral rotatoria. La mediana del cuestionario DASH fue de 2,5 puntos (rango 0-30,8). Grados variables de artrosis están presentes en 93,3% de los codos y 54,4% de calcificaciones. El aumento medio del ángulo de carga fue de 7,7º respecto al lado sano (rango de 0,9 a 15,8º). Conclusiones: La resección de la cabeza radial por fractura aislada en pacientes jóvenes presenta unos resultados satisfactorios, con pérdidas muy bajas de movilidad y fuerza a nivel del codo. A pesar de la presencia alta de cambios artrósicos y menor de signos clínicos de inestabilidad, el dolor y discapacidad en el codo son muy bajos. En base a estos resultados, la resección de la cabeza radial es una técnica válida para fracturas aisladas incluso en pacientes jóvenes (AU)

Background: Radial head resection has been a widely used procedure in cases of non-reconstructable radial head fracture. Some authors propose the use of radial head arthroplasty. The purpose of this study was to evaluate the long-term outcome of radial head resection for isolated fracture, without instability at the time of the fracture, and its radiological and functional repercussions at the elbow level. Methods: We reviewed 44 clinical records with acute resection of the radial head following isolated radial head fracture, with absence of associated injuries, younger than forty, with a minimum follow-up of 15 years. Information was collected on elbow pain, biomechanical function, flexion and extension elbow strength and elbow instability compared with the non-affected side. A radiological study was conducted on all patients to determine the presence of degenerative changes, calcifications and measurement of the carrying angle. Outcomes were evaluated with Disabilities of the Arm, Shoulder and Hand score as an instrument to measure the patient’s perceived disability. Results: The group under study is made up of ten women and thirty-four men, with an average age at the time of fracture of 28.6 years (ranging from 15-40) and an average time since the fracture or follow-up time of 28.5 years (ranging from 16-38). The affectation was on the dominant side in thirty cases (23 right-handed and 7 left-handed). Thirty-nine patients (88.6%) had no elbow pain, and in all other cases was mild or moderate. Loss of mobility and strength was 1.5% for flexo-extension, 3.5% for prono-supination, 7.9% for flexion strength and 3.5% for extension strength. We appreciated four cases of valgus instability and two of postero-lateral instability. The average DASH score was 6.9 points. Radiographic changes of arthritis were present in 93.3% and 54.4% f calcifications. The mean increase of carrying angle was 7.7º compared with non-affected gide (ranking from 0.9-15.8º). Conclusion: Radial head resection for isolated fracture in young patients presents satisfactory results, with very low losses of elbow mobility and strength. Despite the high presence of osteoarthritic changes or lower clinical signs of instability, elbow pain and disability are very low. Our conclusion, based in these results, is that radial head resection is still a useful surgical procedure for isolated fractures even in young patients (AU)

Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing?

INTRODUCTION: At the age of 21, the trajectory of services offered to youth with profound intellectual disability (ID) change significantly since access to specialised services is more limited. Despite the desire of parents to avoid any impact on their child, several factors can influence the course of this transition. However, there is little research on facilitators and obstacles to the transition to adulthood, and impacts on people with a profound ID. It is therefore difficult to provide solutions that meet their specific needs. OBJECTIVE: The study aimed to document the needs of parents and young adults with profound ID during and after the transition to adulthood by exploring their transitioning experience and factors that influenced it. METHOD: Using a descriptive qualitative design, two individual semi-structured interviews were conducted with fourteen (14) parents of young adults aged between 18 and 26 with a profound ID. RESULTS: At this point, many material, informative, cognitive and emotional needs of young adults and their parents are not met. Obstacles, mainly organisational, persist and result in a particularly difficult transition to adulthood experience. CONCLUSION: By knowing the specific needs of these families, it is possible to develop and implement solutions tailored to their reality. WHAT THE PAPERS ADDS?: The transition to adulthood is a critical period for families with young adults with an intellectual disability (ID), a reality observed internationally. Current literature on all levels of ID suggests some barriers to transition that lead to negative impacts on both parents and young adults with ID. However, presently, very little research exists on the reality of families of young adults with profound ID and factors influencing transition to adult life. Most of studies target people with mild to moderate ID. Considering the significant disabilities of people with profound ID, it is possible to imagine that their experience of transition will be even more difficult and they will present specific needs. The lack of understanding of these needs makes it difficult to introduce solutions tailored to their reality. The results of this current study suggest that many needs of young adults with profound ID and their parents are not met despite existent transition planning services. Transition to adulthood seems particularly difficult for these families who face many challenges. Parents in this study proposed different obstacles during transition to adulthood that could be improved for creation of future solutions adapted to their reality.

Experiences of deafblind people about health care. / Experiencias de las personas sordociegas sobre la atención sanitaria.

Deafblindness is a disability resulting from the combination of visual and auditory sensory impairments, which can manifest in different levels causing special communication problems. Deafblind people have special needs that derive from difficulties in sensing, understanding, attention and a lack of the skills required to function effectively in society. Deafblindness requires specialized services, personnel specifically trained in its care and special methods for communication. OBJECTIVE: The main objective of this study is to explore the experiences of deafblind people in relation to health care throughout their lives. This study was developed at the St. Angela de la Cruz Centre, belonging to the Association of Parents of Deafblind People in Spain. METHOD: Phenomenological qualitative study, through semi-structured interviews with deafblind people at the St. Ángela de la Cruz Centre, Salteras (Seville), carried out in 2015, with the help of interpreters in Spanish sign language. Topics covered in the interviews refer to facilities, human resources, time waiting and health care. RESULTS: Coinciding statements were obtained, where the participants point out architectural and educational barriers in health care and stand out better if the professionals know sign language. CONCLUSIONS: It can be highlighted that healthcare professionals lack knowledge of all aspects of deafblindness, sign language in particular, and there is a shortage of signs and information for the deafblind. Moreover, alternatives are required to reduce waiting times and improve direct communication with health professionals.