Achieving medical stability: Wives\u27 experiences with heart failure

The incidence of heart failure continues to rise as innovative treatments are developed. Despite life-prolonging interventions, morbidity and mortality in patients younger than 65 remain high. Few studies have focused on this younger cohort and/or their family caregivers as they navigate the complex illness trajectories manifested in heart failure. Instrumental case studies were employed to present exemplars for each of the five identified heart failure trajectories. Culling data from a longitudinal study of female spousal caregivers, each case study represents a wife\u27s discussion of caring for a husband (years) in response to the husband\u27s changing heart failure trajectory. The goal of medical stability and the notion of uncertainty permeate throughout the case studies. Suggestions for supporting these wives are presented. © The Author(s) 2010

The Somatic Genomic Landscape of Glioblastoma

We describe the landscape of somatic genomic alterations based on multi-dimensional and comprehensive characterization of more than 500 glioblastoma tumors (GBMs). We identify several novel mutated genes as well as complex rearrangements of signature receptors including EGFR and PDGFRA. TERT promoter mutations are shown to correlate with elevated mRNA expression, supporting a role in telomerase reactivation. Correlative analyses confirm that the survival advantage of the proneural subtype is conferred by the G-CIMP phenotype, and MGMT DNA methylation may be a predictive biomarker for treatment response only in classical subtype GBM. Integrative analysis of genomic and proteomic profiles challenges the notion of therapeutic inhibition of a pathway as an alternative to inhibition of the target itself. These data will facilitate the discovery of therapeutic and diagnostic target candidates, the validation of research and clinical observations and the generation of unanticipated hypotheses that can advance our molecular understanding of this lethal cancer

Palliative needs of spousal caregivers of patients with heart failure followed up at specialized heart failure centers

As the incidence of heart failure increases, more patients and their caregivers are faced with needs related to the unpredictable nature of the illness. Palliative care interventions are an appropriate way to meet these needs; however, palliative care remains underutilized. Family caregivers, particularly spouses, play an important role providing care to these patients; thus, it is important to consider their needs when planning interventions. The purpose of this article was to describe the needs of spousal caregivers of patients followed up at specialized heart failure centers within the context of the dynamic ebb and flow of heart failure. Forty-five spouses (n = 45) were interviewed over 12 to 18 months to follow their changing needs. Grounded theory methods were used to collect and analyze data. Four categories of overarching needs amenable to palliative care interventions were identified: informational, financial, psychosocial, and physical. These needs were always present but changed during times of medical stability versus exacerbation/medical instability. Caregivers continually reprioritized their needs in response to the heart failure experience; therefore, episodic offerings of palliative care during exacerbations are inadequate. Nurses can play a pivotal role in facilitating comprehensive palliative care interventions to improve the experience of those caring for and living with heart failure. © 2011 The Hospice and Palliative Nurses Association

A longitudinal comparison of health‐related quality of life in rural and urban recipients of left ventricular assist devices

Left ventricular assist devices (LVAD) are a common treatment for advanced heart failure (HF) to improve ventricular function, symptoms, and health‐related quality of life (HRQOL). Many LVAD recipients travel long distances from rural areas for LVAD implantation and follow‐up care. Individuals with HF in rural settings who have not undergone LVAD implantation have reported poor HRQOL. However, to date, no studies have compared HF‐specific or generic HRQOL in rural and urban LVAD recipients. The purpose of this study was to compare generic and HF‐specific HRQOL longitudinally from preimplantation to 1‐, 3‐, and 6‐ months postimplant in a cohort of rural and urban LVAD recipients (n = 95; rural n = 32 and urban n = 63). We measured generic HRQOL using the European Quality of Life Visual Analog Scale and HF‐specific HRQOL with the quality of life domain of the Kansas City Cardiomyopathy Questionnaire (KCCQ). Latent growth curve modeling identified two phases of change in generic and HF‐specific HRQOL: the initial response to LVAD between preimplantation and 1‐month postimplant and the subsequent change between 1‐ and 6‐months postimplant. Comparable improvements in generic HRQOL were noted in rural and urban LVAD recipients during both phases of change. Urban LVAD recipients had greater initial improvements in HF‐specific HRQOL (KCCQ) compared with rural recipients (13.0 ± 5.6, p = .02), but subsequent improvements were similar among rural and urban recipients. Ongoing assessment of generic and HF‐specific HRQOL is necessary during LVAD therapy

A longitudinal comparison of health‐related quality of life in rural and urban recipients of left ventricular assist devices

Left ventricular assist devices (LVAD) are a common treatment for advanced heart failure (HF) to improve ventricular function, symptoms, and health‐related quality of life (HRQOL). Many LVAD recipients travel long distances from rural areas for LVAD implantation and follow‐up care. Individuals with HF in rural settings who have not undergone LVAD implantation have reported poor HRQOL. However, to date, no studies have compared HF‐specific or generic HRQOL in rural and urban LVAD recipients. The purpose of this study was to compare generic and HF‐specific HRQOL longitudinally from preimplantation to 1‐, 3‐, and 6‐ months postimplant in a cohort of rural and urban LVAD recipients (n = 95; rural n = 32 and urban n = 63). We measured generic HRQOL using the European Quality of Life Visual Analog Scale and HF‐specific HRQOL with the quality of life domain of the Kansas City Cardiomyopathy Questionnaire (KCCQ). Latent growth curve modeling identified two phases of change in generic and HF‐specific HRQOL: the initial response to LVAD between preimplantation and 1‐month postimplant and the subsequent change between 1‐ and 6‐months postimplant. Comparable improvements in generic HRQOL were noted in rural and urban LVAD recipients during both phases of change. Urban LVAD recipients had greater initial improvements in HF‐specific HRQOL (KCCQ) compared with rural recipients (13.0 ± 5.6, p = .02), but subsequent improvements were similar among rural and urban recipients. Ongoing assessment of generic and HF‐specific HRQOL is necessary during LVAD therapy

Naive Expectations to Resignation

Purpose: This study examined life descriptions of persons with stage D heart failure (HF) comparing those newly diagnosed to those with chronic HF. Methods: A secondary analysis of interviews from 75 participants followed in a longitudinal study of persons with stage D HF was thematically analyzed. There were 24 participants who were recently diagnosed with stage D HF (less than 2 years) and 51 participants with HF longer than 2 years. Results: Both groups shared life descriptions along a continuum, where recently diagnosed participants described naive expectations with hope for improvement, while the chronic group appeared resigned to their fate and the reality of the limitations of living with HF. Four themes illustrated differences between the groups: outlook on life, activity adjustments, understanding of HF, and mood. Conclusions: Although persons with stage D HF share the same life descriptions, they have differing perspectives of life with HF. Findings from this study can help health-care providers tailor interventions based on the length of time from diagnosis