The Design of a new NICU Patient Area: Combining Design for Usability and Design for Emotion

In the design of medical products both usability and emotional experience are important to be considered. Usability can enhance the work situation of medical staff and ensure patient safety. Emotion related product aspects, on the other hand, influence the recovery pace of patients as well as the work satisfaction of staff. For an optimal medical design both aspects should receive well-balanced attention during the design process. Usability and emotional experience are currently related in literature. However, about the relation between these two aspects in practical design projects little information is available. Therefore we will discuss the exploration of the practical relation between Design for Usability and Design for Emotion in a design process. We explored the relation during concurrent application of both design approaches to the design of a patient area for a Neonatal Intensive Care Unit (NICU). Our aim was not to develop a new design method, but to explore in practice how both design approaches could be addressed concurrently. This paper describes the applied design approach, its strength and weaknesses as well as the design results. Overall, the NICU design case has proven that the concurrent application of Design for Emotion and Design for Usability is feasible in practice and results in a satisfactory design. Keywords: Usability; Design For Emotion; Medical Appliance; Participatory Design; Case Study</p

Design Probes for People with Dementia

In order to include persons with dementia in the MinD project actively, design probes were developed to provide insight into their perspectives. We applied probes due to their exploratory character and participation through self-documentation. The aim of this paper is to reflect on the design of the probes in relation to the outcomes as a source of inspiration for designers. More specifically, we investigate the openness and tangibility of the probes, and their content relating to the past, the current or the future. The five participants completed the probes to a large extent. The openness of assignments influenced their completion and the resulting value for empathizing and inspiration for designers: More defined assignments led to more sharing of personal and sensitive information than very open ones. While crafty, tangible assignments were filled in more extensively than less tangible ones, the classical writing assignments resulted more often in more introspective and reflective information from participants. Furthermore, participants filled in assignments about past memories more extensively than those relating to future goals

Designing with and for people with dementia: developing a mindful interdisciplinary co-design methodology

This paper reports on the development of a mindful interdisciplinary design methodology in the context of the MinD project research into designing for and with people with dementia, which takes the particular focus on supporting the subjective well-being and self-empowerment of people with early to mid stage dementia in social context. Existing research is for the most part focussed on functional support and safe-keeping from the perspective of the carer. References to decision-making and empowerment are predominantly related to action planning for dementia care or advance care planning. References to care and social interaction show that caregivers tend to take a deficit-oriented perspective, and occupation of people with dementia is often associated with doing 'something' with little focus on the meaningfulness of the activity. Furthermore, caregivers and people with dementia tend to differ in their perspectives, e.g. on assistive devices, which might offer support. The MinD project, has therefore developed an interdisciplinary co-design methodology in which the voices to people with dementia contribute to better understanding and developing mindful design solutions that support people with dementia with regard to their the subjective well-being and self-empowerment a well as meaningful and equitable social engagement. This paper discussed the design methodological framework and methods developed for the data collection and design development phases of the project, and their rationale. It thus makes a contribution to interdisciplinary methodologies in the area of design for health

Home parenteral nutrition (HPN) registry in spain for the years 2007, 2008 and 2009 (Nadya-SENPE group)

Objetivo: Comunicar los datos del registro de Nutrición Parenteral Domiciliaria (NPD) del grupo de trabajo NADYA-SENPE de los años 2007, 2008 y 2009. Material y métodos: Recopilación de los datos del registro “on-line” introducidos por las Unidades responsables del seguimiento de la NPD desde el 1 de enero de 2007 al 31 de diciembre de 2009 dividido por años naturales. Resultados: Año 2007: Se registraron 133 pacientes con NPD (61 hombres y 72 mujeres), de 21 hospitales. La edad media de los 119 pacientes mayores de 13 años fue de 53,7 ± 14,9 años, y de 3,6 ± 3,6 años la de los 14 pacientes que no los superaban. La patología más frecuente fue la neoplasia (24%) seguida de las alteraciones de la motilidad intestinal y la enteritis posradiación (ambas 14%). En el 43% de los casos el motivo de indicación fue el síndrome de intestino corto, seguido de malabsorción (27%) y obstrucción intestinal (23%). Los catéteres más utilizados fueron los tunelizados (69%) y los reservorios subcutáneos (27%). Las complicaciones mas frecuentes fueron las sépticas relacionadas con el catéter con una tasa de 0,92 infecciones por cada mil días de NPD. La duración de la NPD fue superior a los dos años en el 50% de los casos. Al acabar el año seguía en activo el 71,4% de los pacientes; la muerte fue la principal causa de la finalización de la NPD (57,5%). El 26% de los pacientes se consideraron candidatos al trasplante intestinal. Año 2008: Se registraron 143 pacientes con NPD (62 hombres y 81mujeres), de 24 hospitales. La edad media de los 133 pacientes mayores de 13 años fue de 54,7 ± 13,9 años, y de 3,7 ± 0,6 años la de los 10 pacientes que no los superaban. La patología más frecuente fue la neoplasia (20%) seguida de la enteritis rádica (14%) y las alteraciones de la motilidad intestinal (13%). En el 44% de los casos el motivo de indicación fue el síndrome de intestino corto, seguido de malabsorción (28%) y obstrucción Nutriintestinal (20%). Los catéteres más utilizados fueron los tunelizados (60%) y los reservorios subcutáneos (29%). Las complicaciones mas frecuentes fueron las sépticas relacionadas con el catéter con una tasa de 0,50 infecciones por cada mil días de NPD. La duración de la NPD fue superior a los dos años en el 67% de los casos. Al acabar el año seguía en activo el 71,6% de los pacientes; la muerte fue la principal causa de la finalización de la NPD (52,4%). El 29% de los pacientes se consideraron candidatos al trasplante intestinal. Año 2009: Se registraron 158 pacientes con NPD (62 hombres y 96 mujeres), de 24 hospitales. La edad media de los 149 pacientes mayores de 13 años fue de 55,2 ± 13,0 años. La patología más frecuente fue la neoplasia (25%) seguida de la enteritis rádica (12%) y las alteraciones de la motilidad intestinal (11%). En el 42% de los casos el motivo de indicación fue el síndrome de intestino corto, seguido de malabsorción y obstrucción intestinal (ambas 23%). Los catéteres más utilizados fueron los tunelizados (60%) y los reservorios subcutáneos (36%). Las complicaciones mas frecuentes fueron las sépticas relacionadas con el catéter con una tasa de 0,67 infecciones por cada mil días de NPD. La duración de la NPD fue superior a los dos años en el 58% de los casos. Al acabar el año seguía en activo el 79,2% de los pacientes; el paso a alimentación oral fue la principal causa de la finalización de la NPD (48%). El 23% de los pacientes se consideraron candidatos a trasplante intestinal. Conclusiones: Se observa un aumento progresivo de los pacientes registrados respecto a años anteriores con una prevalencia muy variable según comunidades autónomas. La principal patología sigue siendo la neoplasia, que ocupa el primer lugar desde 2003. Se aprecia una disminución de las complicaciones sépticas relacionadas con el catéter en los dos últimos años, siendo la tasa de 2008 la más baja desde la creación del registroObjective: To report the data of the Home Parenteral Nutrition (HPN) registry of the NADYA-SENPE working group for the years 2007, 2008 and 2009. Methodology: We compiled the data from the on-line registry introduced by the responsible Units for the monitoring of HPN from January 1st 2007 to December 31st 2009. Included fields were: age, sex, diagnosis and reason for HPN, access path, complications, beginning and end dates, complementary oral or enteral nutrition, activity level, autonomy degree, product and fungible material supply, withdrawal reason and intestinal transplant indication. Results: 2007: 133 patients with HPN were registered (61 males and 72 females), belonging to 21 hospitals. Average age for the 119 patients older than 13 years old was 53.7 ± 14.9 years, and 3.6 ± 3.6 y. for the 14 patients under 14 years old. Most frequent pathology was neoplasm (24%), followed by intestinal motility disorders and actinic enteritis (14% both). The reason for HPN provision was short bowel syndrome (43%), malabsorption (27%), and intestinal obstruction (23%). Tunnelled catheters were mostly used (69%), followed by implanted port-catheters (27%). Catheter related infections were the most frequent complications, with a rate of 0.92 episodes/103 HPN days. HPN was provided for more than two years in 50% of the cases. By the end of 2007, 71.4% of the patients remained active; exitus was the most frequent reason to end HPN (57.5%). 26% of the patients were eligible for intestinal transplant. 2008: 143 patients with HPN were registered (62 males and 81 females), belonging to 24 hospitals. Average age for the 133 patients older than 13 years old was 54.7 ± 13.9 years, and 3.7 ± 0.6 y. for the 10 patients under 14 years old. Most frequent pathology was neoplasm (20%), followed by actinic enteritis (14%) and intestinal motility disorders (13% ). The reason for HPN provision was short bowel syndrome (44%), malabsorption (28%), and intestinal obstruction (20%). Tunnelled catheters were mostly used (60%), followed by implanted port-catheters (29%). Catheter related infections were the most frequent complications, with a rate of 0.50 episodes/103 HPN days. HPN was provided for more than two years in 67% of the cases. By the end of 2008, 71.6% of the patients remained active; exitus was the most frequent reason to end HPN (52.4%). 29% of the patients were eligible for intestinal transplant. 2009: 158 patients with HPN were registered (62 males and 96 females), belonging to 24 hospitals. Average age for the 149 patients older than 13 years old was 55.2 ± 13.0 years. Most frequent pathology was neoplasm (25%), followed by actinic enteritis (12%) and intestinal motility disorders (11%). The reason for HPN provision was short bowel syndrome (42%), malabsorption, and intestinal obstruction (23% both). Tunnelled catheters were mostly used (60%), followed by implanted port-catheters (36%). Catheter related infections were the most frequent complications, with a rate of 0.67 episodes/103 HPN days. HPN was provided for more than two years in 58% of the cases. By the end of 2009, 79.2% of the patients remained active; full oral nutrition was the most frequent reason to end HPN (48%). 23% of the patients were eligible for intestinal transplant. Conclusions: We observe an increase in registered patients with respect to previous years, with a very different prevalence among regions. Neoplasia remains as the main pathology since 2003. We observe a decrease in catheter-related infections in the last two years, being the 2008 rate the smallest since the register’s beginning

Home parenteral nutrition registry in Spain for the year 2010: NADYA-SENPE group

Objetivos: Comunicar los datos del Registro del Grupo NADYA SENPE de Nutrición Parenteral Domiciliaria NPD en España del año 2010. Material y métodos: Estudio descriptivo de la base de datos del Registro de ámbito nacional de NPD del grupo NADYA-SENPE (1 de enero de 2010 al 31 de diciembre de 2010). Para el cálculo de prevalencias se utilizó los últimos datos publicados por el Instituto Nacional de Estadística. Resultados: Se registraron 148 pacientes procedentes de 23 hospitales, 86 mujeres (58,11%) y 9 niños (6,08%). La edad media de los 139 pacientes adultos fue de 53,06 ± 15,41 años. La duración media de la NPD fue de 316,97 días/paciente. El diagnóstico más frecuente en los niños (menores de 14 años) fue intestino corto traumático con 5 casos (55,55%) y en los adultos la neoplasia en tratamiento paliativo 29 (19,59%). El motivo de la indicación de la NPD fue el síndrome de intestino corto en 74 ocasiones (47%). La vía de acceso más frecuentemente registrada fue el catéter tunelizado en 36 (22,78%) casos seguido del reservorio en 13 (8,23%) y otras vías en 3 ocasiones (1,90%). Se registraron 23 infecciones relacionadas con el catéter (82,14%), lo que representa 0,49/1000 días de NP y todas ellas ocurrieron en los adultos. A lo largo del año finalizaron 24 episodios de NPD, la causa más frecuente fue el paso a la vía oral en 12 episodios (50%). Se registró que los pacientes tenían una actividad normal en 70 episodios de NPD (44,30%) con una total autonomía en 88 de episodios (55,69%). Se identificaron 39 (24,68%) posibles candidatos para trasplante intestinal. Conclusiones: El número de pacientes registrados es discretamente inferior al del año anterior, aunque el número de hospitales participantes es el mismo. La complicación más frecuente sigue siendo la infección relacionada con el catéter aunque ha disminuido su incidencia respecto a años anteriores, presentándose la tasa más baja desde la creación del registro. Las diferencias en la participación en el registro observadas por Comunidades Autónomas lleva a plantear el desarrollo de estrategias de implementación del registro. Se observa un aumento progresivo de la duración de los días de NPD a lo largo de los años que hace pensar en la cronicidad de algunos pacientes, pero nos obliga a estudiar la existencia de un posible factor de confusión, en el caso de que existiera un olvido de cierre de algún episodio por lo que se hace necesario actualizar el registro con sistemas de alertas periódicas que faciliten la revisión de los pacientes incluidos y optimice la validez del registroObjectives: To report the Group Registry NADYASENPE data about home parenteral nutrition (HPN) in Spain in 2010. Material and methods: A descriptive study of the database of the national registry of HPN of NADYA-SENPE (December 10, 2009 to December 10, 2010). For the calculation of prevalence the latest data published by the Institute National Statistics Office (01/01/2009) was used. Results: There were registered 148 patients from 23 hospitals, 86 women (58.11%) and 9 children (6.08%). The average age of the 139 patients older than 14 years was 53.06 ± 15.41 years. The average duration of HPN was 316.97 days/patient. The most common diagnosis in those younger than 14 years was short bowel traumatic with 5 cases (55.55%) and in those older than 14 years, palliative care cancer with 29 cases (19.59%). The reason for the indication for HPN was short bowel syndrome in 74 cases (47%). The access via most frequently recorded was tunneled catheter in 36 cases (22.78%) followed by implanted port-catheters in 13 cases (8.23%) and other pathways in 3 cases (1.90%). There were 23 catheterrelated infections (82.14%) which represented 0.49 /1,000 days of PN, all of which occurred in cases older than 14 years. During the year 24 episodes of HPN ended, the most frequent cause was the transition to oral nutrition in 12 episodes (50%). It was reported that patients had a normal activity in 70 episodes of HPN (44.30%) with complete autonomy in 88 episodes (55.69%). Some patients 39 (24.68%) were potential candidates for intestinal transplantation. Conclusions: The number of registered patients is slightly lower than the previous year, although the number of participating hospitals is the same. The most frequent complication remains catheter-related infection but its incidence has decreased from previous years, presenting the lowest rate since the creation of the record. Differences in participation in the registry observed in the Autonomous Communities causes the development of implementation strategies. There is a gradual increase in day length of HPN over the years, which suggests the chronic treatments of some patients and obliges to study the existence of a possible confounding factor, in case there is an oversight of closing an episode. Therefore, it is necessary to update the registry with warning systems that facilitate periodic review of the patients and optimize the validity of registratio

Nutrición enteral domiciliaria en España: registro Nadya del año 2011-2012

Objective: To describe the results of the home enteral nutrition (HEN) registry of the NADYA-SENPE group in 2011 and 2012. Material and methods: We retrieved the data of the patients recorded from January 1st 2011 to December 31st 2012. Results: There were 3021 patients in the registry during the period from 29 hospitals, which gives 65.39 per million inhabitants. 97.95% were adults, 51.4% male. Mean age was 67.64 ± 19.1, median age was 72 years for adults and 7 months for children. Median duration with HEN was 351 days and for 97.5% was their first event with HEN. Most patients had HEN because of neurological disease (57.8%). Access route was nasogastric tube for 43.5% and gastrostomy for 33.5%. Most patients had limited activity level and, concerning autonomy, 54.8% needed total help. Nutritional formula was supplied from chemist’s office to 73.8% of patients and disposables, when necessary, was supplied from hospitals to 53.8% of patients. HEN was finished for 1,031 patients (34.1%) during the period of study, 56.6% due to decease and 22.2% due to recovery of oral intake. Conclusions: Data from NADYA-SENPE registry must be explained cautiously because it is a non-compulsory registry. In spite of the change in the methodology of the registry in 2010, tendencies regarding HEN have been maintained, other than oral routeObjetivos: Describir los resultados del registro de nutrición enteral domiciliaria (NED) del grupo NADYASENPE de los años 2011 y 12. Material y métodos: Se recopilaron los datos introducidos en el registro desde el 1 de enero de 2011 al 31 de diciembre de 2012. Resultados: Hubo 3021 pacientes en el registro durante el periodo, procedentes de 29 hospitales, lo que da una prevalencia de 65,39 casos por millón de habitantes. 97.95% fueron adultos, 51,4% varones. La edad media fue 67,64 ± 19,1 años y la mediana 72 años para los adultos y 7 meses para los niños. La duración media de la NED fue 351 días y para el 97,5% fue el primer episodio con NED. La mayoría de pacientes tenían NED por una enfermedad neurológica (57,8%). La vía de acceso fue sonda nasogástrica para el 43,5% y gastrostomía para el 33,5%. La mayoría de pacientes tuvieron un nivel de actividad física limitado y, respecto a la autonomía, 54,8% necesitaba ayuda total. La fórmula de nutrición se suministró desde las oficinas de farmacia para el 73,8% y los fungibles, cuando fueron necesarios, desde los hospitales para el 53,8%. La NED se suspendió en 1.031 pacientes (34,1%) durante el periodo de estudio, 56,6% debido a fallecimiento y 22,2% debido a recuperación de la vía oral. Conclusiones: Los datos del registro NADYA-SENPE deben ser interpretados con precaución ya que se trata de un registro voluntario. A pesar del cambio de metodología del registro en 2010, las tendencias en NED se han mantenido, salvo la importancia cuantitativa de la vía ora

Coadministration of the Three Antigenic Leishmania infantum Poly (A) Binding Proteins as a DNA Vaccine Induces Protection against Leishmania major Infection in BALB/c Mice

Highly conserved intracellular proteins from Leishmania have been described as antigens in natural and experimental infected mammals. The present study aimed to evaluate the antigenicity and prophylactic properties of the Leishmania infantum Poly (A) binding proteins (LiPABPs). Three different members of the LiPABP family have been described. Recombinant tools based on these proteins were constructed: recombinant proteins and DNA vaccines. The three recombinant proteins were employed for coating ELISA plates. Sera from human and canine patients of visceral leishmaniasis and human patients of mucosal leishmaniasis recognized the three LiPABPs. In addition, the protective efficacy of a DNA vaccine based on the combination of the three Leishmania PABPs has been tested in a model of progressive murine leishmaniasis: BALB/c mice infected with Leishmania major. The induction of a Th1-like response against the LiPABP family by genetic vaccination was able to down-regulate the IL-10 predominant responses elicited by parasite LiPABPs after infection in this murine model. This modulation resulted in a partial protection against L. major infection. LiPABP vaccinated mice showed a reduction on the pathology that was accompanied by a decrease in parasite burdens, in antibody titers against Leishmania antigens and in the IL-4 and IL-10 parasite-specific mediated responses in comparison to control mice groups immunized with saline or with the non-recombinant plasmid. The results presented here demonstrate for the first time the prophylactic properties of a new family of Leishmania antigenic intracellular proteins, the LiPABPs. The redirection of the immune response elicited against the LiPABP family (from IL-10 towards IFN-γ mediated responses) by genetic vaccination was able to induce a partial protection against the development of the disease in a highly susceptible murine model of leishmaniasisThe study was supported in Spain by grants from Ministerio de Ciencia e Innovación FIS PI11/00095 and FISPI14/00366 from the Instituto de Salud Carlos III within the Network of TropicalDiseases Research (VI P I+D+I 2008-2011, ISCIII -Subdirección General de Redes y Centros de Investigación Cooperativa (RD12/0018/0009)). This work was also supported in Brazil by a grant from CNPq (Ciencia sem Fronteiras-PVE 300174/2014-4). A CBMSO institutional grant from Fundación Ramón Areces is also acknowledged. EAFC is a grant recipient of CNPq. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscrip

Nutrición parenteral domiciliaria en España, 2019: informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA

RESUMEN Objetivo: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del grupo NADYA-SENPE (www.nadyasenpe.com) del año 2019. Material y métodos: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE desde el 1 de enero al 31 de diciembre de 2019. Resultados: se registraron 283 pacientes (51,9 %, mujeres), 31 niños y 252 adultos procedentes de 47 hospitales españoles, lo que representa una tasa de prevalencia de 6,01 pacientes/millón de habitantes/año 2019. El diagnóstico más frecuente en los adultos fue “oncológico paliativo” y “otros” (21,0 %). En los niños fue la enfermedad de Hirschsprung junto a la enterocolitis necrotizante, las alteraciones de la motilidad intestinal y la pseudoobstrucción intestinal crónica, con 4 casos cada uno (12,9 %). El primer motivo de indicación fue el síndrome del intestino corto tanto en los niños (51,6 %) como en los adultos (37,3 %). El tipo de catéter más utilizado fue el tunelizado tanto en los niños (75,9 %) como en los adultos (40,8 %). Finalizaron 68 episodios, todos en adultos: la causa más frecuente fue el fallecimiento (54,4 %). Pasaron a la vía oral el 38,2 %. Conclusiones: el número de centros y profesionales colaboradores con el registro NADYA va incrementándose. Se mantienen estables las principales indicaciones y los motivos de finalización de la NPD

Identification of genetic variants associated with Huntington's disease progression: a genome-wide association study

Background Huntington's disease is caused by a CAG repeat expansion in the huntingtin gene, HTT. Age at onset has been used as a quantitative phenotype in genetic analysis looking for Huntington's disease modifiers, but is hard to define and not always available. Therefore, we aimed to generate a novel measure of disease progression and to identify genetic markers associated with this progression measure. Methods We generated a progression score on the basis of principal component analysis of prospectively acquired longitudinal changes in motor, cognitive, and imaging measures in the 218 indivduals in the TRACK-HD cohort of Huntington's disease gene mutation carriers (data collected 2008–11). We generated a parallel progression score using data from 1773 previously genotyped participants from the European Huntington's Disease Network REGISTRY study of Huntington's disease mutation carriers (data collected 2003–13). We did a genome-wide association analyses in terms of progression for 216 TRACK-HD participants and 1773 REGISTRY participants, then a meta-analysis of these results was undertaken. Findings Longitudinal motor, cognitive, and imaging scores were correlated with each other in TRACK-HD participants, justifying use of a single, cross-domain measure of disease progression in both studies. The TRACK-HD and REGISTRY progression measures were correlated with each other (r=0·674), and with age at onset (TRACK-HD, r=0·315; REGISTRY, r=0·234). The meta-analysis of progression in TRACK-HD and REGISTRY gave a genome-wide significant signal (p=1·12 × 10−10) on chromosome 5 spanning three genes: MSH3, DHFR, and MTRNR2L2. The genes in this locus were associated with progression in TRACK-HD (MSH3 p=2·94 × 10−8 DHFR p=8·37 × 10−7 MTRNR2L2 p=2·15 × 10−9) and to a lesser extent in REGISTRY (MSH3 p=9·36 × 10−4 DHFR p=8·45 × 10−4 MTRNR2L2 p=1·20 × 10−3). The lead single nucleotide polymorphism (SNP) in TRACK-HD (rs557874766) was genome-wide significant in the meta-analysis (p=1·58 × 10−8), and encodes an aminoacid change (Pro67Ala) in MSH3. In TRACK-HD, each copy of the minor allele at this SNP was associated with a 0·4 units per year (95% CI 0·16–0·66) reduction in the rate of change of the Unified Huntington's Disease Rating Scale (UHDRS) Total Motor Score, and a reduction of 0·12 units per year (95% CI 0·06–0·18) in the rate of change of UHDRS Total Functional Capacity score. These associations remained significant after adjusting for age of onset. Interpretation The multidomain progression measure in TRACK-HD was associated with a functional variant that was genome-wide significant in our meta-analysis. The association in only 216 participants implies that the progression measure is a sensitive reflection of disease burden, that the effect size at this locus is large, or both. Knockout of Msh3 reduces somatic expansion in Huntington's disease mouse models, suggesting this mechanism as an area for future therapeutic investigation