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

Abstract 13221: Family Caregivers’ Perceptions of Illness Severity in Heart Failure Patients with Limited Life Expectancy

Introduction: End-of-life (EOL) services, such as hospice and palliative care are often lacking even for the sickest heart failure (HF) patients. Use of these services have been hampered by the lack of availability, lack of referrals due to the unpredictable course in HF, and refusal of services by patients and caregivers due to a lack of understanding of the terminality of HF. The purpose of this study was to determine whether caregivers of HF patients with a predicted survival of less than 2 years, understood disease terminality prior to and after the patient’s death. Methods: As part of a longitudinal study of 100 patient-caregiver dyads, caregivers were interviewed monthly until the patient’s death and then twice post-death. Caregiver interviews immediately preceding and post-patient death were analyzed to determine caregivers’ perceptions of the terminality of heart failure. Results: There were 49 caregivers of patients who died. Patients died an average of 8 months after study enrollment. Most caregivers did not understand the severity of the patient’s disease and 51% (25/49) viewed the death as unexpected. When caregivers retrospectively reflected on the patient’s illness trajectory, they recounted downward trends in patient’s health, but were not aware of the terminality of the patient until after death occurred. Those few caregivers who perceived the illness severity prior to death came to this realization late in the disease trajectory. At the point of recognition, advanced treatments were limited or withdrawn and the short-term use of EOL services such as palliative care or hospice was instituted. Conclusions: The lack of perceived illness severity/terminality has profound implications for patients, caregivers, and healthcare providers. Patients and caregivers who do not understand the seriousness of the illness are less likely to accept EOL services, if offered. Clinicians need to understand the HF EOL trajectory and that EOL discussions and advance care planning help patients and caregivers make informed choices and receive quality care at EOL. We also need to educate all healthcare providers about having these discussions, so palliative care becomes a philosophy of care not merely a referral service immediately preceding death. </jats:p