Diagnosis concealment is prevalent in MS, and associated with diagnosis experience.

BACKGROUND: Receiving a diagnosis of multiple sclerosis (MS) can be stressful; later, patients may conceal their diagnosis. Here, we aimed to (1) assess prevalence of disclosure and concealment behaviors, and (2) explore whether diagnosis experience is associated with later concealment and if MS provider engagement on this topic modifies concealment. METHODS: In a survey-based study, MS patients completed DISCO-MS assessing disclosure and concealment and responded to questions about diagnosis experience and practitioner attention to disclosure. Frequency analysis and Pearson's correlations were used in exploratory analyses. RESULTS: 428 adults with MS participated. 49% (N = 201) conceal their diagnosis. Higher education [t(405) = 3.66, p < 0.001], younger age (r = -0.15, p = 0.002), and shorter disease duration (r = -0.18, p = 0.010) were associated with higher concealment. 39% (N = 159) anticipate negative consequences of disclosure. Individuals reporting positive diagnosis experience (26%, N = 102) were less likely to conceal later in disease course compared to those with negative experience (34%, N = 136) [t(233) = 2.483, p = 0.014]. Patients whose MS providers discussed disclosure (23%, N = 73) anticipated less negative consequences of disclosure [t(323) = 2.475, p = 0.014]. CONCLUSIONS: Diagnosis concealment is common in MS. Favorable diagnosis experience and provider attention to the topic of disclosure throughout the MS disease course may influence diagnosis concealment.

Contribution of whole platelet aggregometry to the endovascular management of unruptured aneurysms: an institutional experience.

BACKGROUND: Stent-assisted coiling of intracranial aneurysms is an efficient alternative treatment to surgical clipping but requires prolonged antiplatelet therapy. Some patients are non-responsive to aspirin and/or clopidogrel. OBJECTIVE: To analyze the implications of this assessment using the 'whole blood aggregometry (WBA) by impedance' technique. MATERIALS AND METHODS: The Southwestern Tertiary Aneurysm Registry was reviewed between 2002 and 2012 for patients with unruptured aneurysms treated with stent-assisted coiling. The study population was divided into patients who were tested preoperatively for platelet responsiveness to aspirin and clopidogrel ('tested' patients) and those who were not ('non-tested'). Where necessary, tested patients received additional doses of antiplatelet drugs to achieve adequate platelet inhibition. Endpoints included the incidence of non-responsiveness, the rates of thrombotic and hemorrhagic complications, and the rates of permanent morbidity and mortality. RESULTS: A total of 266 patients fulfilled our selection criteria: 114 non-tested patients who underwent 121 procedures, and 152 tested patients who underwent 171 procedures. The two groups did not vary significantly in patient age, gender, and aneurysms location. Aspirin non-responsiveness was detected in 3 patients (1.75%) and clopidogrel non-responsiveness in 21 patients (12.3%). Non-tested patients had an 11.6% rate of thrombotic complications with a 4.1% permanent morbidity or mortality rate versus 2.3% and 0.6% in tested patients (p=0.0013). The incidence of hemorrhagic complications was similar between the two groups. CONCLUSIONS: Preoperative platelet inhibition testing using WBA can be useful to assess and correct antiaggregant non-responsiveness, and may reduce postoperative mortality and permanent morbidity.

Older people living alone at home with terminal cancer.

This study describes the lived experiences of older people coping with terminal cancer and living alone, focusing on how they face challenges of the biographical life changes from their disease progression. Face-to-face semi-structured interviews were conducted in two phases with palliative care clients of a community-based service in Western Australia (2009-2011): Brief interviews with 43 cancer patients who live alone and then in-depth interviews with 8 of them. Using biographical disruption as the analytical framework for interpreting the qualitative data, four main themes emerged: Biographical disruption: adjusting to change; Biographical continuity: preserving normality; Biographical reconstruction: redefining normality; and Biographical closure: facing the end. Biographical disruption was a suitable framework for analysis, permitting identification of the biographical disruptions of the individual's world and the reframing that is undertaken by the individual to maintain autonomy and independence while acknowledging and accepting their closeness to death. Understanding the factors associated with the individual's need to maintain their own identity will enable nurses working with this population to tailor support plans that meet the individuals' needs while maintaining or restoring the person's sense of self. Interventions that directly address end-of-life suffering and bolster sense of dignity and personhood need to be considered.

A comparison of outcomes among hospital survivors with and without severe comorbidity admitted to the intensive care unit.

Little is known about the experiences of patients with severe comorbidity discharged from Intensive Care Units (ICUs). This project aimed to determine the effects of an ICU stay for patients with severe comorbidity by comparing 1) quality of life (QOL), 2) the symptom profile of hospital survivors and 3) health service use after hospital discharge for patients admitted to ICU with and without severe comorbidity. A case-control study was used. Patients with severe comorbidity were matched to a contemporaneous cohort of ICU patients by age and severity of illness. Assessment tools were the Medical Outcome Study 36-item short-form and European Organisation for Research and Treatment of Cancer QLQ-C15-PAL questionnaires for QOL and the Symptom Assessment Scale for symptom distress. A proportional odds assumption was performed using an ordinal regression model. The difference in QOL outcome was the dependent variable for each pair. Health service use after discharge from ICU was monitored with patient diaries. Patients aged 18+ years admitted to an ICU in a metropolitan teaching hospital between 2011 and 2012 were included. We recruited 30 cases and 30 controls. QOL improved over the six months after hospital discharge for patients with and without severe comorbidity (P <0.01) within the groups but there was no difference found between the groups (P >0.3). There was no difference in symptoms or health service use between patients with and without severe comorbidity. ICU admission for people with severe comorbidity can be appropriate to stabilise the patient's condition and is likely to be followed by some overall improvement over the six months after hospital discharge.

Composite Noble-Metal Films/H+ -Conducting Solid-Polymer Electrolyte Assemblies: The Nitrate-Reduction Activity in an Asymmetric Sandwich-Type Reactor.

Asymmetric (Pt|Nafion|Pt-Pd-Cu) assemblies were fabricated to study the nitrate-reduction reaction (NRR) at the cathode surface. The influence of the material composition, supplied current, and applied potential on the reactivity, kinetics, and product selectivity were thoroughly investigated. The cathode assembly consisting of 54 atom % Pt showed enhanced reactivity both in binary (Pt-Pd; k1 ≈10.7×10-3  min-1 ) and ternary (Cu-Pt-Pd; k1 ≈28.6×10-3  min-1 ) states. This composition was found to be highly nitrite-selective (80 % in the binary state and 53 % in the ternary state). The mechanistic studies revealed that the reduction of nitrate ions to ammonia proceeded through a catalytic hydrogenation reaction followed by electrochemical hydrogen generation.

Staying just one step ahead: providing care for patients with motor neurone disease.

INTRODUCTION: There is limited information about the experiences and educational needs of health professionals who may be required to provide care for people with Motor Neurone Disease (MND) especially in the later stages of the disease. The aim of this study was to determine the experiences of, and need for, education of these health professionals. METHODS: Interviews and focus groups were conducted with 31 health professionals with some experience in providing palliative care for people with MND. Thematic content analysis was used to identify common themes. RESULTS: A key theme, Just One Step Ahead, emerged, that describes the central capability health professionals identified as necessary to help individuals plan and prepare for disease and lifestyle changes just before they arise. Two subthemes also emerged: Expertise in MND and Bespoke Communication. Expertise in MND described the required understanding of the disease and the particular individual's version of the disease to allow the health professional to plan, advise, support and anticipate the needs of the person living with MND. Bespoke Communication was the facility to tailor care messages sensitively and effectively to the range of people involved in care (patients, family, healthcare team members). CONCLUSIONS: Care of people with MND requires up-to-date expertise about the disease and skilled communication abilities to manage complexity and change. Timely and focused education and specialist MND support for care providers are essential to tailored and responsive care and a widely available education programme has been developed to address these needs.

Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008).

Family caregivers are crucial for supporting home death. We reviewed published qualitative research on home-based family caregiving at end of life (1998-2008), synthesizing key findings and identifying gaps where additional research is needed. Multiple databases were searched and abstracts reviewed for a focus on family caregiving and palliative care; full articles were reviewed to extract data for this review. In total, 105 articles were included. Findings are presented in the following areas: the caregiving experience and contextual features; supporting family caregivers at end of life; caregiving roles and decision-making; and rewards, meaning and coping. We noted a lack of definitional clarity; a reliance on interview methods and descriptive, thematic analyses, and a relative lack of diversity of patient conditions. Research needs are identified in several areas, including the bereavement experience, caregiver ambivalence, access to services, caregiver meaning-making, and relational and contextual influences on family caregiving at end of life.

Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008).

The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998-2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research. Robust evidence regarding causal relationships between predictor variables and carer outcomes is lacking. Findings suggest the need for knowledge regarding: family caregiving for patients with non-malignant terminal conditions; whether needs and outcomes differ between family caregivers at the end of life and comparison groups; and caregiver outcomes in bereavement. Clear definitions of 'family caregiving', 'end of life', and 'needs' are required as well as greater application and testing of theoretical and conceptual explanations.

A self-management concept for men at the community level: the 'Waist' Disposal Challenge.

The Waist Disposal Challenge consisted of a health intervention at the community level to bring about a reduction in body mass index (BMI) and is delivered at three levels: educational presentations on nutrition and exercise; monthly monitoring of BMI competition; telephone lifestyle coaching with follow-ups. Twenty-three Rotary Clubs participated in Western Australia in 2007-08 (750 Rotarians). The significant to moderate decreases in BMI are an encouraging indication that such community based-projects for men at-risk of developing chronic disease may influence the way health services reorient their community programmes to suit the health psychology of middle-aged to older men.

Supporting lay carers in end of life care: current gaps and future priorities.

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers' needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, "repair" approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.

A qualitative investigation of the palliative care needs of terminally ill people who live alone.

This paper investigates the support needs of people living alone with a terminal illness from a client perspective. In depth, interviews were conducted with 11 clients from Silver Chain Hospice Care in Western Australia to capture their personal experiences of managing at home alone and to assess their physical, social and emotional needs. Findings provided useful insights with respect to many of the motivations, beliefs and wishes of individuals who endeavour to cope on their own with minimal assistance. The needs of these individuals are practical, emotional, physical and existential. At the heart of these concerns is a strong need to be independent and maintain a sense of dignity at end of life.

Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs.

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. The findings from the analysis of 721 services' records from three Australian states, and feedback from health professionals in interviews and postal surveys, demonstrated that there were aspects of being on one's own with a terminal illness and living at home that require a specialised approach and support. This study explored the issues of palliative care patients living alone, from a service provider perspective, and provided evidence-based information to assist with service planning. The study made recommendations to the Australian Department of Health and Ageing about services considered important in developing support structures for this growing population.

To what extent is health and medical research funding associated with the burden of disease in Australia?

OBJECTIVE: This study aimed to analyse the association of the National Health and Medical Research Council fund allocations and several measures of burden of disease in Australia, and compare it to similar studies in the United States and Canada. METHODS: A cross-sectional study comparing disease-specific funding in two time periods (1998-2001 and 2002-03) with data from the Australian Burden of Disease study on four measures of burden of disease (incidence, mortality, years of life lost and disability-adjusted life years in 1996). This association was measured by correlation coefficients. With the use of these measures as predictor variables in a regression analysis, predicted funding was calculated and compared with actual funding. RESULTS: The highest correlation coefficients (r = 0.68-0.75) were exhibited by the DALYs and years of life lost to disability and the relation was significant at p < 0.0001 (1998 to 2003). Based on DALYs, the top five under-funded categories (1998-2001) were intentional injuries, cardiovascular diseases, mental disorders, unintentional injuries and chronic respiratory diseases. The top five over-funded categories were infectious and parasitic diseases, nervous system and sense organ disorders, malignant neoplasms, endocrine and metabolic disorders and genitourinary diseases. CONCLUSIONS: This study revealed a significant relation between NHMRC research funding and burden of disease measures and highlighted that comparison of actual and predicted funding based on different measures of disease can alter conclusions as to whether a disease is over- or under-funded.

Consanguinity-associated kidney diseases in Lebanon: an epidemiological study.

Consanguineous marriages are common in many countries of the Middle East including Lebanon. Their impact on the repartition of kidney diseases and on the risk for familial nephritis is not known. We surveyed all of the dialysis centers in Lebanon. Nine hundred and twenty-five (925) patients and their private physicians were asked to answer a questionnaire. More than half of the hemodialysis (HD) patients had an unknown etiology of their kidney disease. Diabetes, polycystic kidney disease (PKD), chronic pyelonephritis and nephrosclerosis (NS) were the most commonly documented diagnoses. Consanguinity was present in 26% of the total HD population. More consanguineous patients with unknown renal etiology were diagnosed with their kidney diseases and initiated on dialysis before the age of 30 when compared with their non-consanguineous counter-parts (45% versus 33%, P<0.02 and 42% versus 27%, P<0.01), respectively. Similarly, consanguineous polycystic patients were diagnosed and started earlier on dialysis when compared with the non-consanguineous population (34% versus 12%, P<0.05 and 28% versus 8%, P<0.05), respectively suggesting a different disease pattern. Furthermore, the risk for family history of kidney disease was noticeable in the non-consanguineous population and significantly higher among the consanguineous patients (12% versus 18%, P<0.04). Consanguinity-associated kidney diseases affected all religious communities, in particular the Muslim and the Druze (36 and 39%), respectively versus 17% of the Christian community. Certain geographical areas were more involved than others such as the North, South and the Bekaa with the highest percentage (40%) in the latter. Socio-economical level was not a contributing factor. We conclude that the documentation of the underlying etiology in end-stage renal diseases (ESRD) seems to be deficient. Furthermore, consanguinity is prevalent in the Lebanese dialysis patients population, in particular the Muslim and the Druze communities. Consanguinity-associated kidney diseases pattern seems to differ from that of the general HD population by disease diagnosis and initiation at a younger age and a significantly higher risk for familial renal disease. It is a cultural phenomenon prevalent predominantly in the rural areas. We recommend a multi-approach including educational, informative and probably legislative strategy in order to limit and hopefully discourage consanguineous marriages.

Effect of oral iron chelation therapy with deferiprone (L1) on the psychosocial status of thalassaemia patients.

Beta-thalassemia requires life-long treatment, including regular blood transfusion and daily iron chelation by desferrioxamine, which places considerable burden on the social and psychological life of patients. It is expected that oral chelation therapy, which is easier to administer, would improve their psychosocial status. In this sutdy, interviews were conducted with a series of 44 patients recently placed on oral chelation therapy to evaluate their reactions to the new treatment. Eighty-six per cent of patients complied better with the oral chelation therapy. Fifty per cent of patients mentioned that relief from the desferrioxamine pump was the major improvement, while 47% felt psychologically better. Fifty per cent of patients noted improvements in their relationships, while 63% noted increased social activities. Evaluation of a larger sample of patients over a longer period of time is needed in order to confirm the favourable results obtained in this study.

Diabetes mellitus and renal failure: effects on large artery stiffness.

Diabetes mellitus and end-stage renal disease are two pathologic entities associated with increased cardiovascular risk. Several studies have shown that arterial stiffness is increased in both cases and contributes to the increased risk. In order to determine the effect of diabetes and renal failure on arterial stiffness, we conducted a case-control study. One hundred and twenty-two diabetic patients were compared to 122 non-diabetic patients matched to the study group for sex, age, mean arterial pressure, number and localisation of the atherosclerotic alterations. Arterial stiffness was assessed by automatic measurement of the aortic pulse wave velocity (PWV) and by measuring the peripheral and carotid pulse pressure (PP) and reflected waves through analysis of the pulse wave using the principle of applanation tonometry. Aortic PWV was significantly higher in the diabetic subgroup as well as PP at the peripheral and central levels for the same age and mean arterial pressure. In addition, renal failure was independently associated with an increased aortic PWV but not PP in the general population. Independent of the degree of renal failure, a fall in the glomerular filtration rate was also associated with increased aortic PWV. No interaction was noted between renal failure and diabetes mellitus. In conclusion, this study shows that diabetic patients have higher arterial stiffness compared to non-diabetic ones having one or more cardiovascular risk factors, manifested by increased aortic PWV and PP. In addition, renal failure, irrespective of its degree and independent of diabetes mellitus, is associated with increased aortic PWV but not PP.