Do consumer voices in health-care citizens’ juries matter?

Background There is widespread agreement that the public should be engaged in health-care decision making. One method of engagement that is gaining prominence is the citizens’ jury, which places citizens at the centre of the deliberative process. However, little is known about how the jury process works in a health-care context. There is even less clarity about how consumer perspectives are heard within citizens’ juries and with what consequences. Objectives This paper focuses on what is known about the role of consumer voices within health-care citizens’ juries, how these voices are heard by jurors and whether and in what ways the inclusion or exclusion of such voices may matter. Results Consumer voices are not always included in health-care citizens’ juries. There is a dearth of research on the conditions under which consumer voices emerge (or not), from which sources and why. As a result, little is known about what stories are voiced or silenced, and how such stories are heard by jurors, with what consequences for jurors, deliberation, decision-makers, policy and practice. Discussion and Conclusion The potential role of consumer voices in influencing deliberations and recommendations of citizens’ juries requires greater attention. Much needed knowledge about the nuances of deliberative processes will contribute to an assessment of the usefulness of citizens’ juries as a public engagement mechanism

The ideal healthcare: priorities of people with chronic conditions and their carers

Background It is well established that health consumer opinions should be considered in the design, delivery, and evaluation of health services. However, the opinions of people with chronic conditions and their carers and what they actually consider as ideal healthcare is limited. The aim of this study is to investigate the healthcare priorities of consumers with chronic conditions and their carers, if there are differences between these two groups, and if priorities differ depending on geographical location. Methods The nominal group technique was used as a method to identify what is currently important to, or valued by, participants. This method was also particularly suited to learning about healthcare problems and generating important solutions, thereby helping to bridge the gap between research and policy. Recruitment was carried out via purposive sampling, with the assistance of community pharmacies, general practices, various health agencies, government and non-government organisations. A total of 11 nominal groups were conducted; five groups consisted predominantly of consumers (n = 33 participants), two groups consisted predominantly of carers (n = 12 participants) and four were mixed groups, i.e. consumers, carers, and both (n = 26 participants). Results The findings suggested that to create a model of ideal healthcare for people with chronic conditions and their carers, appropriate and timely healthcare access was of paramount importance. Continuity and coordinated care, patient-centred care and affordability were equally the second most important healthcare priorities for all groups. When compared with other groups, access was discussed more frequently among participants residing in the rural area of Mount Isa. Compared to consumers, carers also discussed priorities that were more reminiscent with their caring roles, such as increased access and continuity and coordinated care. Conclusions Access to healthcare is the most important priority for people with chronic conditions and their carers. In the event of inappropriate access for certain groups, all other efforts to increase the quality of healthcare delivery, e.g. patient-centred care, may be pointless. However, health professionals alone may be limited in their ability to address the concerns related to healthcare access; structural changes by health policy makers may be needed

Modele pogarszania się statusu społecznego, stanu psychologicznego i duchowego pod koniec życia u chorych na raka płuca i niewydolność serca

Dotychczas opisywano typowy przebieg pogarszania się stanu fizycznego pacjentów w schyłkowej fazie różnych chorób. Niewykluczone, że u tych chorych przykre doznania związane ze sferą społeczną, psychologiczną i duchową mogą również układać się w określony schemat. Autorzy niniejszej pracy podjęli próbę określenia i porównania zmieniających się potrzeb psychologicznych, społecznych i duchowych pacjentów w schyłkowej fazie choroby w okresie ostatniego roku ich życia. W tym celu poddali analizie dane pochodzące z dwóch długookresowych badań jakościowych, opartych na zbieraniu pogłębionych wywiadów dotyczących doświadczeń i potrzeb osób z chorobami terminalnymi. W badanej grupie znalazło się 48 chorych na zaawansowanego raka płuca (n = 24) lub schyłkową niewydolność serca (n = 24), od których zebrano w sumie 112 pogłębionych wywiadów. Uzyskane dane przeanalizowano indywidualnie w odniesieniu do każdego pacjenta, a następnie ogólnie, w zależności od stopnia zaawansowania schorzenia. Stwierdzono, że pod koniec życia pacjenci mają szczególne potrzeby społeczne, psychologiczne i duchowe. Status społeczny chorych na raka płuca odzwierciedlał ich pogarszający się stan fizyczny, natomiast ich dobrostan psychologiczny i stan duchowy pogarszały się równolegle na czterech etapach: rozpoznanie choroby, powrót do domu po leczeniu, postęp choroby i stan terminalny. U chorych na zaawansowaną niewydolność serca status społeczny i stan psychologiczny pogarszały się stopniowo, postępując za pogarszającą się sprawnością fizyczną; zmianom tym towarzyszyły cierpienia duchowe o zmiennym nasileniu. Holistyczna opieka nad chorymi w końcowym okresie ich życia powinna uwzględniać wszystkie wymienione aspekty. Stwierdzenie i uwzględnienie w praktyce klinicznej powtarzalności zmian statusu społecznego, stanu psychologicznego i duchowego może ułatwić lekarzom dyskusję z chorymi i ich opiekunami na temat możliwego przebiegu zdarzeń, a przez to przyczynić się do zmniejszenia stresu związanego z postępem choroby

Iron Labeling and Pre-Clinical MRI Visualization of Therapeutic Human Neural Stem Cells in a Murine Glioma Model

Treatment strategies for the highly invasive brain tumor, glioblastoma multiforme, require that cells which have invaded into the surrounding brain be specifically targeted. The inherent tumor-tropism of neural stem cells (NSCs) to primary and invasive tumor foci can be exploited to deliver therapeutics to invasive brain tumor cells in humans. Use of the strategy of converting prodrug to drug via therapeutic transgenes delivered by immortalized therapeutic NSC lines have shown efficacy in animal models. Thus therapeutic NSCs are being proposed for use in human brain tumor clinical trials. In the context of NSC-based therapies, MRI can be used both to non-invasively follow dynamic spatio-temporal patterns of the NSC tumor targeting allowing for the optimization of treatment strategies and to assess efficacy of the therapy. Iron-labeling of cells allows their presence to be visualized and tracked by MRI. Thus we aimed to iron-label therapeutic NSCs without affecting their cellular physiology using a method likely to gain United States Federal Drug Administration (FDA) approval.For human use, the characteristics of therapeutic Neural Stem Cells must be clearly defined with any pertubation to the cell including iron labeling requiring reanalysis of cellular physiology. Here, we studied the effect of iron-loading of the therapeutic NSCs, with ferumoxide-protamine sulfate complex (FE-Pro) on viability, proliferation, migratory properties and transgene expression, when compared to non-labeled cells. FE-Pro labeled NSCs were imaged by MRI at tumor sites, after intracranial administration into the hemisphere contralateral to the tumor, in an orthotopic human glioma xenograft mouse model.FE-Pro labeled NSCs retain their proliferative status, tumor tropism, and maintain stem cell character, while allowing in vivo cellular MRI tracking at 7 Tesla, to monitor their real-time migration and distribution at brain tumor sites. Of significance, this work directly supports the use of FE-Pro-labeled NSCs for real-time tracking in the clinical trial under development: "A Pilot Feasibility Study of Oral 5-Fluorocytosine and Genetically modified Neural Stem Cells Expressing Escherichia coli Cytosine Deaminase for Treatment of Recurrent High-Grade Gliomas"

The relationship between non-orthographic language abilities and reading performance in chronic aphasia : an exploration of the primary systems hypothesis

PURPOSE : This study investigated the relationship between non-orthographic language abilities and reading in order to examine assumptions of the primary systems hypothesis and further our understanding of language processing poststroke. METHOD : Performance on non-orthographic semantic, phonologic, and syntactic tasks, as well as oral reading and reading comprehension tasks, was assessed in 43 individuals with aphasia. Correlation and regression analyses were conducted to determine the relationship between these measures. In addition, analyses of variance examined differences within and between reading groups (within normal limits, phonological, deep, or global alexia). RESULTS : Results showed that non-orthographic language abilities were significantly related to reading abilities. Semantics was most predictive of regular and irregular word reading, whereas phonology was most predictive of pseudohomophone and nonword reading. Written word and paragraph comprehension were primarily supported by semantics, whereas written sentence comprehension was related to semantic, phonologic, and syntactic performance. Finally, severity of alexia was found to reflect severity of semantic and phonologic impairment. CONCLUSIONS : Findings support the primary systems view of language by showing that non-orthographic language abilities and reading abilities are closely linked. This preliminary work requires replication and extension; however, current results highlight the importance of routine, integrated assessment and treatment of spoken and written language in aphasia.The first author was supported by the American Speech-Language-Hearing Foundation New Century Scholars Doctoral Scholarship and the University of Washington Research Training in Speech & Hearing Sciences National Institute on Deafness and Other Communication Disorders training grant (T32000033).https://pubs.asha.org/journal/jslhrhj2019Speech-Language Pathology and Audiolog

Assessing relative resilience potential of coral reefs to inform management

International audienceEcological resilience assessments are an important part of resilience-based management (RBM) and can help prioritize and target management actions. Use of such assessments has been limited due to a lack of clear guidance on the assessment process. This study builds on the latest scientific advances in RBM to provide that guidance from a resilience assessment undertaken in the Commonwealth of the Northern Mariana Islands (CNMI). We assessed spatial variation in ecological resilience potential at 78 forereef sites near the populated islands of the CNMI: Saipan, Tinian/Aguijan, and Rota. The assessments are based on measuring indicators of resilience processes and are combined with information on anthropogenic stress and larval connectivity. We find great spatial variation in relative resilience potential with many high resilience sites near Saipan (5 of 7) and low resilience sites near Rota (7 of 9). Criteria were developed to identify priority sites for six types of management actions (e.g., conservation, land-based sources of pollution reduction, and fishery management and enforcement) and 51 of the 78 sites met at least one of the sets of criteria. The connectivity simulations developed indicate that Tinian and Aguijan are each roughly 10 × the larvae source that Rota is and twice as frequent a destination. These results may explain the lower relative resilience potential of Rota reefs and indicates that actions in Saipan and Tinian/Aguijan will be important to maintaining supply of larvae. The process we describe for undertaking resilience assessments can be tailored for use in coral reef areas globally and applied to other ecosystems

Piperidinols that show anti-tubercular activity as inhibitors of arylamine N-acetyltransferase: an essential enzyme for mycobacterial survival inside macrophages

Latent M. tuberculosis infection presents one of the major obstacles in the global eradication of tuberculosis (TB). Cholesterol plays a critical role in the persistence of M. tuberculosis within the macrophage during latent infection. Catabolism of cholesterol contributes to the pool of propionyl-CoA, a precursor that is incorporated into cell-wall lipids. Arylamine N-acetyltransferase (NAT) is encoded within a gene cluster that is involved in the cholesterol sterol-ring degradation and is essential for intracellular survival. The ability of the NAT from M. tuberculosis (TBNAT) to utilise propionyl-CoA links it to the cholesterol-catabolism pathway. Deleting the nat gene or inhibiting the NAT enzyme prevents intracellular survival and results in depletion of cell-wall lipids. TBNAT has been investigated as a potential target for TB therapies. From a previous high-throughput screen, 3-benzoyl-4-phenyl-1-methylpiperidinol was identified as a selective inhibitor of prokaryotic NAT that exhibited antimycobacterial activity. The compound resulted in time-dependent irreversible inhibition of the NAT activity when tested against NAT from M. marinum (MMNAT). To further evaluate the antimycobacterial activity and the NAT inhibition of this compound, four piperidinol analogues were tested. All five compounds exert potent antimycobacterial activity against M. tuberculosis with MIC values of 2.3-16.9 µM. Treatment of the MMNAT enzyme with this set of inhibitors resulted in an irreversible time-dependent inhibition of NAT activity. Here we investigate the mechanism of NAT inhibition by studying protein-ligand interactions using mass spectrometry in combination with enzyme analysis and structure determination. We propose a covalent mechanism of NAT inhibition that involves the formation of a reactive intermediate and selective cysteine residue modification. These piperidinols present a unique class of antimycobacterial compounds that have a novel mode of action different from known anti-tubercular drugs

Study protocol: developing a decision system for inclusive housing: applying a systematic, mixed-method quasi-experimental design

Background Identifying the housing preferences of people with complex disabilities is a much needed, but under-developed area of practice and scholarship. Despite the recognition that housing is a social determinant of health and quality of life, there is an absence of empirical methodologies that can practically and systematically involve consumers in this complex service delivery and housing design market. A rigorous process for making effective and consistent development decisions is needed to ensure resources are used effectively and the needs of consumers with complex disability are properly met. Methods/Design This 3-year project aims to identify how the public and private housing market in Australia can better respond to the needs of people with complex disabilities whilst simultaneously achieving key corporate objectives. First, using the Customer Relationship Management framework, qualitative (Nominal Group Technique) and quantitative (Discrete Choice Experiment) methods will be used to quantify the housing preferences of consumers and their carers. A systematic mixed-method, quasi-experimental design will then be used to quantify the development priorities of other key stakeholders (e.g., architects, developers, Government housing services etc.) in relation to inclusive housing for people with complex disabilities. Stakeholders randomly assigned to Group 1 (experimental group) will participate in a series of focus groups employing Analytical Hierarchical Process (AHP) methodology. Stakeholders randomly assigned to Group 2 (control group) will participate in focus groups employing existing decision making processes to inclusive housing development (e.g., Risk, Opportunity, Cost, Benefit considerations). Using comparative stakeholder analysis, this research design will enable the AHP methodology (a proposed tool to guide inclusive housing development decisions) to be tested. Discussion It is anticipated that the findings of this study will enable stakeholders to incorporate consumer housing preferences into commercial decisions. Housing designers and developers will benefit from the creation of a parsimonious set of consumer-led housing preferences by which to make informed investments in future housing and contribute to future housing policy. The research design has not been applied in the Australian research context or elsewhere, and will provide a much needed blueprint for market investment to develop viable, consumer directed inclusive housing options for people with complex disability

Treatment Burden and Chronic Illness: Who is at Most Risk?

Background: There is a need to ascertain the type and level of treatment burden experienced by people with co-morbidities. This is important to identify the characteristics of participants who are at most risk of treatment burden.  Objective: The aim of this study is to identify the characteristics of participants who are at most risk of treatment burden.  Methods: This cross-sectional study was part of a larger project and recruitment was conducted across four Australian regions: rural, semi-rural and metropolitan. Participants were asked about their treatment burden using an adapted version of a measure, which included the following five dimensions: medication, time and administrative, lifestyle change, social life and financial burden.  Results: In total, 581 participants with various chronic health conditions reported a mean global treatment burden of 56.5 out of 150 (standard deviation = 34.5). Number of chronic conditions (β = .34, p < 0.01), age, (β = −.27, p < 0.01), the presence of an unpaid carer (β = .22, p < 0.001) and the presence of diabetes mellitus and other endocrine conditions (β = .13, p < 0.01) were significant predictors of overall treatment burden. For the five dimensions of treatment burden, social, medicine and administrative burden were predicted by the same cluster of variables: number of conditions, age, presence of an unpaid carer and diabetes. However, in addition to these variables, financial dimensions were also predicted by education level, ethnicity and health insurance. Educational level also influenced lifestyle burden.  Conclusion: A substantial proportion of community-dwelling adults with chronic conditions have considerable levels of treatment burden. Specifically, health professionals should provide greater focus on managing overall treatment burden for persons who are of young age, have an endocrine condition or an unpaid carer, or a combination of these factors