Decisions at the end of life: have we come of age?

Decision making is a complex process and it is particularly challenging to make decisions with, or for, patients who are near the end of their life. Some of those challenges will not be resolved - due to our human inability to foresee the future precisely and the human proclivity to change stated preferences when faced with reality. Other challenges of the decision-making process are manageable. This commentary offers a set of approaches which may lead to progress in this field

Burden and Well-Being Among a Diverse Sample of Cancer, Congestive Heart Failure, and Chronic Obstructive Pulmonary Disease Caregivers

Three important causes of death in the U.S. (cancer, congestive heart failure [CHF], and chronic obstructive pulmonary disease [COPD]) are preceded by long periods of declining health; often, family members provide the majority of care for individuals who are living with serious illnesses and are at risk for impaired well-being

Caregiver Experience During Advanced Chronic Illness and Last Year of Life

Caregivers of patients with serious illness endure significant burden, yet it is not clear at what stage of advanced illness patient and caregiver needs are greatest. This study compared prevalence and predictors of caregiver esteem and burden during two different stages of patients’ illnesses – advanced chronic illness and the last year of life

Family caregiver use and value of support services in the VA Program of comprehensive assistance for family caregivers

Context: The US Congress in 2010 established the Program of Comprehensive Assistance for Family Caregivers (PCAFC) in the Department of Veterans Affairs’ (VA) healthcare system, expanding services for family caregivers of eligible veterans with injuries sustained or aggravated in the line of duty on or after 11 September 2001. The program includes a Caregiver Support Coordinator, stipends for caregivers, education/training, and additional services. Objective: The primary goal of this study was to examine the types of services that family caregivers of veterans use and value, how services are used and any limitations family caregivers’ experienced. Given that few interventions assess caregiver satisfaction with services, there is a gap in the existing literature addressing these outcomes. Methods: We assessed how caregivers use and value services with a national, web-based survey (N=1,407 caregivers) and semi-structured phone interviews (N=50 caregivers). Findings: Caregivers rated all services as helpful and especially valued financial support to be with the veteran, training in skills for symptom management, and assistance with navigating the healthcare system. A majority reported more confidence in caregiving, knowing about resources for caregiving and feeling better prepared to support the veteran’s progress and healthcare engagement. However, only a minority reported awareness of the full range of PCAFC services. Limitations: There was a low response rate to the survey, which may have implications for generalisability to the whole population of caregivers accessing PCAFC. Additionally, we rely on self-report rather than objective measures of service use and outcomes. Implications: This is the first in-depth examination of experiences of caregivers of using the innovative PCAFC model of support. It acknowledges the important role of caregivers in health and long-term (social) care delivery and can be used to inform development of strategies outside the VA healthcare system to recognise caregivers. Findings suggest that a system-wide program to effectively include caregivers as part of the care team should include mechanisms to help connect caregivers with an array of resources, options from which to find those which best fit their personal needs and preferences

Mitochondrial and plastidial COG0354 proteins have folate-dependent functions in iron–sulphur cluster metabolism

COG0354 proteins have been implicated in synthesis or repair of iron/sulfur (Fe/S) clusters in all domains of life, and those of bacteria, animals, and protists have been shown to require a tetrahydrofolate to function. Two COG0354 proteins were identified in Arabidopsis and many other plants, one (At4g12130) related to those of α-proteobacteria and predicted to be mitochondrial, the other (At1g60990) related to those of cyanobacteria and predicted to be plastidial. Grasses and poplar appear to lack the latter. The predicted subcellular locations of the Arabidopsis proteins were validated by in vitro import assays with purified pea organelles and by targeting assays in Arabidopsis and tobacco protoplasts using green fluorescent protein fusions. The At4g12130 protein was shown to be expressed mainly in flowers, siliques, and seeds, whereas the At1g60990 protein was expressed mainly in young leaves. The folate dependence of both Arabidopsis proteins was established by functional complementation of an Escherichia coli COG0354 (ygfZ) deletant; both plant genes restored in vivo activity of the Fe/S enzyme MiaB but restoration was abrogated when folates were eliminated by deleting folP. Insertional inactivation of At4g12130 was embryo lethal; this phenotype was reversed by genetic complementation of the mutant. These data establish that COG0354 proteins have a folate-dependent function in mitochondria and plastids, and that the mitochondrial protein is essential. That plants retain mitochondrial and plastidial COG0354 proteins with distinct phylogenetic origins emphasizes how deeply the extant Fe/S cluster assembly machinery still reflects the ancient endosymbioses that gave rise to plants

Erratum to: Methods for evaluating medical tests and biomarkers

[This corrects the article DOI: 10.1186/s41512-016-0001-y.]

Evidence synthesis to inform model-based cost-effectiveness evaluations of diagnostic tests: a methodological systematic review of health technology assessments

Background: Evaluations of diagnostic tests are challenging because of the indirect nature of their impact on patient outcomes. Model-based health economic evaluations of tests allow different types of evidence from various sources to be incorporated and enable cost-effectiveness estimates to be made beyond the duration of available study data. To parameterize a health-economic model fully, all the ways a test impacts on patient health must be quantified, including but not limited to diagnostic test accuracy. Methods: We assessed all UK NIHR HTA reports published May 2009-July 2015. Reports were included if they evaluated a diagnostic test, included a model-based health economic evaluation and included a systematic review and meta-analysis of test accuracy. From each eligible report we extracted information on the following topics: 1) what evidence aside from test accuracy was searched for and synthesised, 2) which methods were used to synthesise test accuracy evidence and how did the results inform the economic model, 3) how/whether threshold effects were explored, 4) how the potential dependency between multiple tests in a pathway was accounted for, and 5) for evaluations of tests targeted at the primary care setting, how evidence from differing healthcare settings was incorporated. Results: The bivariate or HSROC model was implemented in 20/22 reports that met all inclusion criteria. Test accuracy data for health economic modelling was obtained from meta-analyses completely in four reports, partially in fourteen reports and not at all in four reports. Only 2/7 reports that used a quantitative test gave clear threshold recommendations. All 22 reports explored the effect of uncertainty in accuracy parameters but most of those that used multiple tests did not allow for dependence between test results. 7/22 tests were potentially suitable for primary care but the majority found limited evidence on test accuracy in primary care settings. Conclusions: The uptake of appropriate meta-analysis methods for synthesising evidence on diagnostic test accuracy in UK NIHR HTAs has improved in recent years. Future research should focus on other evidence requirements for cost-effectiveness assessment, threshold effects for quantitative tests and the impact of multiple diagnostic tests