[Development of the short version of the informal caregiver burden assessment questionnaire]

OBJETIVE to create a reduced version of the QASCI, which is structurally equivalent to the long one and meets the criteria of reliability and validity. METHOD Through secondary data from previous studies, the participants were divided into two samples, one for the development of reduced version and the second for study of the factorial validity. Participants responded to QASCI, the SF 36, the ADHS and demographic questions. RESULTS A reduced version of 14 items showed adequate psychometric properties of validity and internal consistency, adapted to a heptadimensional structure that assesses positive and negative aspects of care. CONCLUSION Confirmatory factor analysis revealed a good fit with the advocated theoretical model.

The social construction of “Feeling of Burden”: Narrative on dependency and care in old age

In a society in which ambivalent positions of old age coexist, suffering from limitations in the basic functions of the human being disrupts the identity of old people and the social perception that is held of them. The impact of the deterioration and the physical incapacity affects not only old adults but also those who take care of them; it entails repercussions of instrumental, emotional and social types. Within the social and subjective dimension of aging arise stereotypes and negative images from being considered dependent subjects; one of most important of these is the “feeling of being a burden”. During the in-depth interviews, the diverse implications of this negative image in advanced old age are identified in old adults and their carers in the city of Durango, Mexico. The analysis of narratives shows results pertaining to the interrelation between the subjective aspects of the identity, the beliefs, and the power of social discourses.

Anthropometric characteristics and the burden of altered nutritional status among neuropsychiatric patients at Zomba Mental Hospital in Zomba, Malawi

Objective To determine the prevalence of overnutrition and undernutrition among neuropsychiatric inpatients and outpatients at Zomba Mental Hospital in Zomba, Malawi. Methods In this analytical cross-sectional study (n = 239), data were collected from psychiatric patients who were either inpatients (n = 181) or outpatients (n = 58) at Zomba Mental Hospital, which is the largest mental health facility in Malawi. Information was collected about patient demographics, anthropometric data, dietary information, and tobacco and alcohol use, among other variables. Data were entered and analysed in SPSS 16.0 (SPSS Inc., Chicago, IL, USA). Means were generated and compared between male and female patients, and between inpatients and outpatients. Results The study recruited 158 male and 81 female patients, with mean ages of 31.24 ± 11.85 years and 33.08 ± 15.18 years (p = 0.328), respectively. Male patients were significantly taller (165.27 ± 7.25 cm) than female patients (155.30 ± 6.56 cm) (p < 0.001); were significantly heavier than females (60.02 ± 10.56 kg versus 55.64 ± 10.53 kg); and had a significantly lower mean body mass index (BMI) than females (21.87 ± 3.21 vs. 23.01 ± 3.78) (p = 0.016). Overweight and obese patients comprised 17.6% of the participants, and 8.8% were underweight. There were no significant differences in the prevalence of overweight, obesity, and underweight between male and female participants, or between inpatients and outpatients. Conclusion Our study—the first one of its kind in Malawi—characterised the anthropometry of neuropsychiatric patients at a major metal health facility in Malawi, and has shown a high proportion of overweight patients and a notable presence of underweight patients among them. Being overweight or obese is a risk factor for metabolic disorders. Being underweight may aggravate mental illness or disturb the effect of medication. There is need, therefore, to include nutrition screening and therapeutic or supplementary feeding as part of a comprehensive care and treatment plan for neuropsychiatric patients.

‘Failure to maintain’: care rationing and the clinical and financial burden of nurse sensitive hospital-acquired complications in complex older patients

Background: The ageing population, with concomitant increase in chronic conditions, is increasing the presence of older people with complex needs in hospital. People with dementia are one of these complex populations and are particularly vulnerable to complications in hospital. Registered nurses can offer simultaneous assessment and intervention to prevent or mitigate hospital-acquired complications through their skilled brokerage between patient needs and hospital functions. A range of patient outcome measures that are sensitive to nursing care has been tested in nursing work environments across the world. However, none of these measures have focused on hospitalised older patients. Method: This thesis explores nursing-sensitive complications for older patients with and without dementia using an internationally recognised, risk-adjusted patient outcome approach. Specifically explored are: the differences between rates of complications; the costs of complications; and cost comparisons of patient complexity. A retrospective cohort study of an Australian state’s 2006–07 public hospital discharge data was utilised to identify patient episodes for people over age 50 (N=222,440) where dementia was identified as a primary or secondary diagnosis (N=44,422). Extra costs for patient episodes were estimated based on length of stay (LOS) above the average for each patient’s Diagnosis Related Group (DRG) (N=157,178) and were modelled using linear regression analysis to establish the strongest patient complexity predictors of cost. Results: Hospitalised patients with a primary or secondary diagnosis of dementia had higher rates of complications than did their same-age peers. The highest rates and relative risk for people with dementia were found in four key complications: urinary tract infections; pressure injuries; pneumonia, and delirium. While 21.9% of dementia patients (9,751/44,488, p<0.0001) suffered a complication, only 8.8% of non-dementia patients did so (33,501/381,788, p<0.0001), giving dementia patients a 2.5 relative risk of acquiring a complication (p<0.0001). These four key complications in patients over 50 both with and without dementia were associated with an eightfold increase in length of stay (813%, or 3.6 days/0.4 days) and double the increased estimated mean episode cost (199%, or A$16,403/ A$8,240). These four complications were associated with 24.7% of the estimated cost of additional days spent in hospital in 2006–07 in NSW (A$226million/A$914million). Dementia patients accounted for 22.0% of these costs (A$49million/A$226million) even though they were only 10.4% of the population (44,488/426,276 episodes). Hospital-acquired complications, particularly for people with a comorbidity of dementia, cost more than other kinds of inpatient complexity but admission severity was a better predictor of excess cost. Discussion: Four key complications occur more often in older patients with dementia and the high rate of these complications makes them expensive. These complications are potentially preventable. However, the care that can prevent them (such as mobility, hydration, nutrition and communication) is known to be rationed or left unfinished by nurses. Older hospitalised people who have complex needs, such as those with dementia, are more likely to experience care rationing as their care tends to take longer, be less predictable and less curative in nature. This thesis offers the theoretical proposition that evidence-based nursing practices are rationed for complex older patients and that this rationed care contributes to functional and cognitive decline during hospitalisation. This, in turn, contributes to the high rates of complications observed. Thus four key complications can be seen as a ‘Failure to Maintain’ complex older people in hospital. ‘Failure to Maintain’ is the inadequate delivery of essential functional and cognitive care for a complex older person in hospital resulting in a complication, and is recommended as a useful indicator for hospital quality. Conclusions: When examining extra length of stay in hospital, complications and comorbid dementia are costly. Complications are potentially preventable, and dementia care in hospitals can be improved. Hospitals and governments looking to decrease costs can engage in risk-reduction strategies for common nurse sensitive complications such as healthy nursing work environments that minimise nurses’ rationing of functional and cognitive care. The conceptualisation of complex older patients as ‘business as usual’ rather than a ‘burden’ is likely necessary for sustainable health care services of the future. The use of the ‘Failure to Maintain’ indicators at institution and state levels may aid in embedding this approach for complex older patients into health organisations. Ongoing investigation is warranted into the relationships between the largest health services expense (hospitals), the largest hospital population (complex older patients), and the largest hospital expense (nurses). The ‘Failure to Maintain’ quality indicator makes a useful and substantive contribution to further clinical, administrative and research developments.

Epothilone-d rescues cognition and attenuates alzheimer’s disease-like pathology in APP/PS1 mice

AIMS: Cognitive decline in Alzheimer's disease (AD) patients has been linked to synaptic damage and neuronal loss. Hyperphosphorylation of tau protein destabilizes microtubules leading to the accumulation of autophagy/vesicular material and the generation of dystrophic neurites, thus contributing to axonal/synaptic dysfunction. In this study, we analyzed the effect of a microtubule-stabilizing compound in the progression of the disease in the hippocampus of APP751SL/PS1M146L transgenic model. METHODS: APP/PS1 mice (3 month-old) were treated with a weekly intraperitoneal injection of 2 mg/kg epothilone-D (Epo-D) for 3 months. Vehicle-injected animals were used as controls. Mice were tested on the Morris water maze, Y-maze and object-recognition tasks for memory performance. Abeta, AT8, ubiquitin and synaptic markers levels were analyzed by Western-blots. Hippocampal plaque, synaptic and dystrophic loadings were quantified by image analysis after immunohistochemical stainings. RESULTS: Epo-D treated mice exhibited a significant improvement in the memory tests compared to controls. The rescue of cognitive deficits was associated to a significant reduction in the AD-like hippocampal pathology. Levels of Abeta, APP and ubiquitin were significantly reduced in treated animals. This was paralleled by a decrease in the amyloid burden, and more importantly, in the plaque-associated axonal dystrophy pathology. Finally, synaptic levels were significantly restored in treated animals compared to controls. CONCLUSION: Epo-D treatment promotes synaptic and spatial memory recovery, reduces the accumulation of extracellular Abeta and the associated neuritic pathology in the hippocampus of APP/PS1 model. Therefore, microtubule stabilizing drugs could be considered therapeutical candidates to slow down AD progression. Supported by FIS-PI12/01431 and PI15/00796 (AG),FIS-PI12/01439 and PI15/00957(JV)

THE CELEBRITY BURDEN: CELEBRITY CAMPAIGNS IN THE PURSUIT OF HUMANITARIANISM

Celebrity participation in humanitarianism and politics has received a lot of attention in recent times. Though many researchers have sought to explain the reasons underlying this phenomenon, there appears to be little information as to the efficacy of these celebrity efforts. The present research thus undertakes an analysis of the celebrity's participation through a study on the effectiveness of the celebrity-led campaign. To achieve this, I conduct a discourse and visual analysis of media publications surrounding two celebrity-led campaigns. The research leans heavy on theories underlining the celebrity mechanism and Street et al's framework on celebrity participation in politics. The study confirms Street et al's argument that performance, legitimacy and organization are central to the success of the celebrity-led campaign. For campaigns aimed at initiating policy change, I propose an additional category of stakeholders' response which provides a means of evaluating efficacy. My findings show that organization, legitimization, stakeholders' response and performance are highly dependent on the actions of the lead celebrity, making these celebrities active agents in the production of discourse on the "third world". As celebrities engage in humanitarian work, they take up positions as representatives of the aid recipient. The result is the dispossession and silencing of the aid recipient. Out of my discussion of these practices evolves the concept of the celebrity burden.

Caregivers’ burden experienced by relatives living with a person suffering from schizophrenia

Abstract: Schizophrenia is a complex chronic disease that turns the affected person into a dependent and disorganized patient. This pathology is responsible for a major burden on the family members who are in charge of taking care of that person. Analyze to what extant can socio-demographic, clinical and environmental variables interfere with the burden felt by family members who live with someone suffering from schizophrenia; to analyze the relationship between a depressive mood state and the burden on the family members who live with a person suffering from schizophrenia were our objectives. As a methodology, quantitative and non-experimental, cross-sectional, descriptive and correlational study. The data collection was done through socio-demographic questionnaires; Vaz Serra and Pio Abreu’s Portuguese version of Beck Depression Inventory (1973); Zarit Burden Interview adapted by Sequeira (2007). 95 informal caregivers taking care of schizophrenic patients were assessed. Participants are mainly female (66%), aged 40 or over (79%) and 36 % are the patients’ mothers. Gender, age and existing family ties variables interfered significantly with the impact caused on the caregiver’s burden. There was a statistically significant correlation between the depressive symptomatology and the burden experienced by the family caregivers. Family/ informal caregiver experience several difficulties when they have to go through a daily process of taking care of a family member suffering from schizophrenia. This situation may cause exhaustion, conflicts, emotional suffering and even depressive symptomatology. This burden of care grows stronger as the patients are older, when they are male and when there are no families ties binding patient and caregiver. These variables must be taken into account in these caregivers’ service plans.

A systematic review of the psychobiological burden of informal caregiving for patients with dementia: focus on cognitive and biological markers of chronic stress

As the physiological impact of chronic stress is difficult to study in humans, naturalistic stressors are invaluable sources of information in this area. This review systematically evaluates the research literature examining biomarkers of chronic stress, including neurocognition, in informal dementia caregivers. We identified 151 papers for inclusion in the final review, including papers examining differences between caregivers and controls as well as interventions aimed at counteracting the biological burden of chronic caregiving stress. Results indicate that cortisol was increased in caregivers in a majority of studies examining this biomarker. There was mixed evidence for differences in epinephrine, norepinephrine and other cardiovascular markers. There was a high level of heterogeneity in immune system measures. Caregivers performed more poorly on attention and executive functioning tests. There was mixed evidence for memory performance. Interventions to reduce stress improved cognition but had mixed effects on cortisol. Risk of bias was generally low to moderate. Given the rising need for family caregivers worldwide, the implications of these findings can no longer be neglected.

The Burden of Injury in Iowa, December 2008

Injuries are a major public health concern that affects the lives of all Iowans, regardless of age, race, gender, or size of county. Unintentional injuries are the leading cause of death for Iowans between the ages of 1 and 34, while suicides and/or homicides also rank among the top 5 leading causes of death for Iowans between the ages of 1 and 54. Unintentional injury is the 5th leading cause of death for all Iowans, with over 1,500 injury deaths occurring on average each year (from 2002‐ 2006) in Iowa. Injuries also lead to more than 17,000 hospitalizations in Iowa each year and more than 250,000 emergency department (ED) visits. Further, untold numbers of Iowans do not seek medical care for many of the injuries they may incur. Because injuries are preventable, they lead to unnecessary medical costs, economic losses, reduced productivity, and immense physical and emotional strain.

An exploration of treatment burden and patient capacity in people with stroke

Background and aims: Advances in modern medicine have led to improved outcomes after stroke, yet an increased treatment burden has been placed on patients. Treatment burden is the workload of health care for people with chronic illness and the impact that this has on functioning and well-being. Those with comorbidities are likely to be particularly burdened. Excessive treatment burden can negatively affect outcomes. Individuals are likely to differ in their ability to manage health problems and follow treatments, defined as patient capacity. The aim of this thesis was to explore the experience of treatment burden for people who have had a stroke and the factors that influence patient capacity. Methods: There were four phases of research. 1) A systematic review of the qualitative literature that explored the experience of treatment burden for those with stroke. Data were analysed using framework synthesis, underpinned by Normalisation Process Theory (NPT). 2) A cross-sectional study of 1,424,378 participants >18 years, demographically representative of the Scottish population. Binary logistic regression was used to analyse the relationship between stroke and the presence of comorbidities and prescribed medications. 3) Interviews with twenty-nine individuals with stroke, fifteen analysed by framework analysis underpinned by NPT and fourteen by thematic analysis. The experience of treatment burden was explored in depth along with factors that influence patient capacity. 4) Integration of findings in order to create a conceptual model of treatment burden and patient capacity in stroke. Results: Phase 1) A taxonomy of treatment burden in stroke was created. The following broad areas of treatment burden were identified: making sense of stroke management and planning care; interacting with others including health professionals, family and other stroke patients; enacting management strategies; and reflecting on management. Phase 2) 35,690 people (2.5%) had a diagnosis of stroke and of the 39 co-morbidities examined, 35 were significantly more common in those with stroke. The proportion of those with stroke that had >1 additional morbidities present (94.2%) was almost twice that of controls (48%) (odds ratio (OR) adjusted for age, gender and socioeconomic deprivation; 95% confidence interval: 5.18; 4.95-5.43) and 34.5% had 4-6 comorbidities compared to 7.2% of controls (8.59; 8.17-9.04). In the stroke group, 12.6% of people had a record of >11 repeat prescriptions compared to only 1.5% of the control group (OR adjusted for age, gender, deprivation and morbidity count: 15.84; 14.86-16.88). Phase 3) The taxonomy of treatment burden from Phase 1 was verified and expanded. Additionally, treatment burdens were identified as arising from either: the workload of healthcare; or the endurance of care deficiencies. A taxonomy of patient capacity was created. Six factors were identified that influence patient capacity: personal attributes and skills; physical and cognitive abilities; support network; financial status; life workload, and environment. A conceptual model of treatment burden was created. Healthcare workload and the presence of care deficiencies can influence and be influenced by patient capacity. The quality and configuration of health and social care services influences healthcare workload, care deficiencies and patient capacity. Conclusions: This thesis provides important insights into the considerable treatment burden experienced by people who have had a stroke and the factors that affect their capacity to manage health. Multimorbidity and polypharmacy are common in those with stroke and levels of these are high. Findings have important implications for the design of clinical guidelines and healthcare delivery, for example co-ordination of care should be improved, shared decision-making enhanced, and patients better supported following discharge from hospital.

Asociación entre la escala de riesgo Framingham y el puntaje de calcio coronario

Introducción: Entre las diferentes herramientas clínicas para evaluar la presencia de enfermedad coronaria mediante puntajes, la más usada es la Escala de Riesgo cardiovascular de Framingham. Desde hace unos años, se creó el puntaje de calcio coronario el cual mide el riesgo cardiovascular según la presencia de placas ateromatosas vistas por tomografía computarizada. Se evaluó la asociación entre la escala de Framigham y el puntaje de calcio coronario en una población de sujetos sanos asintomáticos. Metodología: Se realizó un estudio transversal para evaluar la asociación entre el puntaje de calcio coronario y la escala de Framingham en sujetos asintomáticos que se practicaron exámen médico preventivo en la Fundación Cardioinfantil- Instituto de Cardiología (FCI-IC) en el periodo comprendido entre 1 de Julio 2011 hasta el 31 de octubre de 2015. Resultados: Se evaluaron 262 pacientes en total. La prevalencia de riesgo cardiovascular fue bajo en un 77.86% de la población, medio en 18.70% y alto en 3.44%, según la escala de Framingham. El riesgo cardiovascular según el puntaje de Calcio coronario fue nulo 70.99%, bajo en 21.75%, medio en 4.19%, severo en 3.05%. Se encontró una asociación entre ambos puntajes para riesgo estadísticamente significativa (p0,00001) Discusión: El riesgo cardiovascular establecido por escala de Framingham se relaciona de forma significativa con la presencia de placas aterioscleróticas. El estudio demostró que en una muestra de sujetos asintomáticos, hay una alteración estructural coronaria temprana.

Stress und Belastung bei Personen im diplomatischen Dienst (Stress and burden in diplomatic service).

This paper describes working and living conditions of persons within diplomatic services from the perspective of stress and demands. The conditions of stress and demands described in this article are similar for leaders, volunteers, actors of international agencies and nongovernmental organizations. Scope and diversity of diplomatic tasks and connected psychsocial stress will be outlined. Families of diplomates are also affected. Mental health problems in the diplomatic corps are known, but they are considered as a taboo issue. Consequently, the basis of empirical research and literature is limited. It is mentioned that expatriates, migrants, refugees and students in foreign countries can develop similar problems. The role of psychology and psychotherapeutic interventions are discussed.

Stress und Belastung bei Personen im diplomatischen Dienst (Stress and burden in diplomatic service).

This paper describes working and living conditions of persons within diplomatic services from the perspective of stress and demands. The conditions of stress and demands described in this article are similar for leaders, volunteers, actors of international agencies and nongovernmental organizations. Scope and diversity of diplomatic tasks and connected psychsocial stress will be outlined. Families of diplomates are also affected. Mental health problems in the diplomatic corps are known, but they are considered as a taboo issue. Consequently, the basis of empirical research and literature is limited. It is mentioned that expatriates, migrants, refugees and students in foreign countries can develop similar problems. The role of psychology and psychotherapeutic interventions are discussed.

Tumor burden as assessed by 18 F FDG PET scan as predictive biomarker for immune checkpoint blockers in advanced NSCLC - a multi centric study

Introduction Only a proportion of patients with advanced NSCLC benefit from Immune checkpoint blockers (ICBs). No biomarker is validated to choose between ICBs monotherapy or in combination with chemotherapy (Chemo-ICB) when PD-L1 expression is above 50%. The aim of the present study is to validate the biomarker validity of total Metabolic Tumor Volume (tMTV) as assessed by 2-deoxy-2-[18F]fluoro-d-glucose positron emission tomography ([18F]FDG-PET) Material and methods This is a multicentric retrospective study. Patients with advanced NSCLC treated with ICBs, chemotherapy plus ICBs and chemotherapy were enrolled in 12 institutions from 4 countries. Inclusion criteria was a positive PET scan performed within 42 days from treatment start. TMTV was analyzed at each center based on a 42% SUVmax threshold. High tMTV was defined ad tMTV>median Results 493 patients were included, 163 treated with ICBs alone, 236 with chemo-ICBs and 94 with CT. No correlation was found between PD-L1 expression and tMTV. Median PFS for patients with high tMTV (100.1 cm3) was 3.26 months (95% CI 1.94–6.38) vs 14.70 (95% CI 11.51–22.59) for those with low tMTV (p=0.0005). Similarly median OS for pts with high tMTV was 11.4 months (95% CI 8.42 – 19.1) vs 33.1 months for those with low tMTV (95% CI 22.59 – NA), p .00067. In chemo-ICBs treated patients no correlation was found for OS (p = 0.11) and a borderline correlation was found for PFS (p=0.059). Patients with high tMTV and PD-L1 ≥ 50% had a better PFS when treated with combination of chemotherapy and ICBs respect to ICBs alone, with 3.26 months (95% CI 1.94 – 5.79) for ICBs vs 11.94 (95% CI 5.75 – NA) for Chemo ICBs (p = 0.043). Conclusion tMTV is predictive of ICBs benefit, not to CT benefit. tMTV can help to select the best upfront strategy in patients with high tMTV.

The Clinical Impact Of Cerebellar Grey Matter Pathology In Multiple Sclerosis.

The cerebellum is an important site for cortical demyelination in multiple sclerosis, but the functional significance of this finding is not fully understood. To evaluate the clinical and cognitive impact of cerebellar grey-matter pathology in multiple sclerosis patients. Forty-two relapsing-remitting multiple sclerosis patients and 30 controls underwent clinical assessment including the Multiple Sclerosis Functional Composite, Expanded Disability Status Scale (EDSS) and cerebellar functional system (FS) score, and cognitive evaluation, including the Paced Auditory Serial Addition Test (PASAT) and the Symbol-Digit Modalities Test (SDMT). Magnetic resonance imaging was performed with a 3T scanner and variables of interest were: brain white-matter and cortical lesion load, cerebellar intracortical and leukocortical lesion volumes, and brain cortical and cerebellar white-matter and grey-matter volumes. After multivariate analysis high burden of cerebellar intracortical lesions was the only predictor for the EDSS (p<0.001), cerebellar FS (p = 0.002), arm function (p = 0.049), and for leg function (p<0.001). Patients with high burden of cerebellar leukocortical lesions had lower PASAT scores (p = 0.013), while patients with greater volumes of cerebellar intracortical lesions had worse SDMT scores (p = 0.015). Cerebellar grey-matter pathology is widely present and contributes to clinical dysfunction in relapsing-remitting multiple sclerosis patients, independently of brain grey-matter damage.