Genomic approaches to mitigating genetic diversity loss in declining populations.

The accelerating pace of global biodiversity loss is exacerbated by habitat fragmentation and subsequent inbreeding in small populations. To address this problem, conservation practitioners often turn to assisted breeding programmes with the aim of enhancing genetic diversity in declining populations. Although genomic information is infrequently included in these efforts, it has the potential to significantly enhance the success of such programmes. In this study, we showcase the value of genomic approaches for increasing genetic diversity in assisted breeding efforts, specifically focusing on a highly inbred population of Western burrowing owls. To maximize genetic diversity in the resulting offspring, we begin by creating an optimal pairing decision tree based on sex, kinship and patterns of homozygosity across the genome. To evaluate the effectiveness of our strategy, we compare genetic diversity, brood size and nestling success rates between optimized and non-optimized pairs. Additionally, we leverage recently discovered correlations between telomere length and fitness across species to investigate whether genomic optimization could have long-term fitness benefits. Our results indicate that pairing individuals with contrasting patterns of homozygosity across the genome is an effective way to increase genetic diversity in offspring. Although short-term field-based metrics of success did not differ significantly between optimized and non-optimized pairs, offspring from optimized pairs had significantly longer telomeres, suggesting that genetic optimization can help reduce the risk of inbreeding depression. These findings underscore the importance of genomic tools for informing efforts to preserve the adaptive potential of small, inbred populations at risk of further decline.

Factors Predicting Bereaved Caregiver Perception of Quality of Care in the Final Week of Life: Implications for Health Care Providers.

BACKGROUND: Cancer caregivers are key stakeholders in the final weeks of life and in bereavement. Research has highlighted end-of-life (EOL) factors important to caregivers, as well as factors contributing to caregiver mental health and bereavement outcomes. There has been limited data on factors predicting caregiver perceptions of quality of EOL care. OBJECTIVE: This study's purpose was to identify modifiable predictors of caregivers' Caregiver Evaluation of Quality of End of Life Care (CEQUEL) scores, with the broader aim of informing clinical interventions to improve caregiver impressions of care and subsequent bereavement adjustment. METHODS: Study data came from Coping with Cancer I (CwC1). CwC1 investigators interviewed advanced cancer patients and caregivers prior to the patient's death (Wave 1) and reinterviewed caregivers following the death (Wave 2) (N=275 dyads). The authors identified potential Wave 1 predictors of CEQUEL scores and performed a series of linear regression analyses to identify a parsimonious predictive model using corrected Akaike's Information Criterion (AICc) values. RESULTS: In adjusted analyses, caregivers rated quality of care as poorer when patients died in a hospital (B=-1.40, SE=0.40, p=0.001) (B, unstandardized regression coefficient; SE, standard error) or had less than one week of inpatient hospice care (B=-1.98, SE=-0.70, p=0.006). Whole-person physician care and caregiver religiosity were associated with perceived higher quality of care in unadjusted, but not adjusted, analyses. CONCLUSIONS: Findings suggest that place of death and hospice length of stay best predict bereaved caregiver evaluations of quality of EOL care. These findings equip health care providers with modifiable targets to improve caregivers' experience of EOL care and subsequent bereavement.

Delivering palliative care to patients and caregivers in inner-city communities: challenges and opportunities.

OBJECTIVE: Social and economic barriers can hinder access to quality palliative and end-of-life care for patients living in inner-city communities. Using a community-based participatory research (CBPR) approach, we investigated the stresses associated with living with a chronic disease and barriers to access and utilization of palliative care resources experienced by low-income patients and caregivers in five inner-city communities. METHODS: Four focus groups (N = 33) were conducted with community stakeholders, including healthcare professionals (social workers and nurses), persons living with chronic illnesses (e.g., HIV/AIDS, cardiovascular disease, and cancer), and caregivers. Focus group responses were analyzed using thematic analyses. RESULTS: Patients' and caregivers' stresses centered around five themes: lack of family support, communication barriers with healthcare professionals, minority stress, caregiver burden, and lack of spiritual support. The community stakeholders identified resources and services to improve access to care and the quality of life of underserved, low-income populations living with chronic illnesses. SIGNIFICANCE OF RESULTS: A CBPR approach enabled us to develop an interdisciplinary and culturally sensitive intervention to begin addressing the palliative and end-of-life needs of the patients and caregivers of the inner-city community.

Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: the caregiver's perception of patient care near death.

PURPOSE: End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. Because none include caregiver perception of patient suffering or prolongation of death, we sought to develop and validate the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale to include these dimensions of caregiver-perceived quality of EOL care. PATIENTS AND METHODS: Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N = 275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL's factor structure was examined; reliability was evaluated using Cronbach's α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. RESULTS: FACTOR ANALYSIS REVEALED FOUR DISTINCT FACTORS: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52-0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (ρ = .13; p≤.05) and hospice enrollment (z = -2.09; p≤.05), and negatively associated with bereaved caregiver regret (ρ = -.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z = -2.06; p≤.05). CONCLUSION: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.

Improving access to palliative care through an innovative quality improvement initiative: an opportunity for pay-for-performance.

BACKGROUND: Improving access to palliative care is an important priority for hospitals as they strive to provide the best care and quality of life for their patients. Even in hospitals with longstanding palliative care programs, only a small proportion of patients with life-threatening illnesses receive palliative care services. Our two well-established palliative care programs in large academic hospitals used an innovative quality improvement initiative to broaden access to palliative care services, particularly to noncancer patients. METHODS: The initiative utilized a combination of electronic and manual screening of medical records as well as intensive outreach efforts to identify two cohorts of patients with life-threatening illnesses who, according to University HealthSystems Consortium (UHC) benchmarking criteria, would likely benefit from palliative care consultation. Given the differing cultures and structure of the two institutions, each service developed a unique protocol for identifying and consulting on suitable patients. RESULTS: Consultation rates in the target populations tripled following the initiative: from 16% to 46% at one hospital and from 15% to 48% at the other. Although two different screening and identification processes were developed, both successfully increased palliative care consultations in the target cohorts. CONCLUSION: Quality improvement strategies that incorporate pay-for-performance incentives can be used effectively to expand palliative care services to underserved populations.

Preliminary report of a palliative care and case management project in an emergency department for chronically ill elderly patients.

The Palliative Care Service at Montefiore Medical Center (MMC) established a pilot project in the emergency department (ED) to identify chronically ill older adults in need of palliative care, homecare, and hospice services and to link such patients with these services. Two advance practice nurses conducted consultations on elderly patients who were found to have one or more "palliative care triggers" on initial screening. A standardized medical record abstraction form was developed. Service utilization and survival were evaluated using the Clinical Information Systems of MMC. Activity of daily living items were developed from the Outcome and Assessment Information Set and the Palliative Care Performance Scale (PPS). Risk factors for hospitalization and use of the ED were taken from the SIGNET model risk screening tool. Physical and emotional symptoms were evaluated using the 28-item Memorial Symptom Assessment Scale short form. Preliminary outcomes and characteristics are presented for 291 patients who completed the intake needs assessment questionnaire. Almost one third (30.9%) of the study cohort died during the project period. Most of the deaths occurred beyond the medical center (7.7% died in the medical center and 23.3% outside the medical center). Thirty percent of patients who died were enrolled on a hospice. Survival time was predicted by the presence of dyspnea, clinician prediction of death on the current hospitalization, psychosocial distress, and PPS scores. Chronically ill patients visiting an urban community ED had complex medical and psychosocial problems with limited support systems and homecare services. Significant proportions of such patients can be expected to have limited likelihood of survival. The presence of palliative homecare and hospice outreach services in the ED in urban community hospitals may provide an effective strategy for linkage of elderly patients at the end of life with otherwise underutilized services.

Palliative sedation: an essential place for clinical excellence.

The complexities that converge around palliative sedation invite clinicians to work together to differentiate the issues and come to recommendations and decisions that are humane, ethical, legal, and clinically sound. Whether a crisis or long-term situation exists, the work is essentially the same. It must include critical thinking, clinical expertise, multidimensional assessment, and an array of interventions to assist patients and families in situations where symptoms and suffering are sufficiently intense to warrant exploration of sedation. The many issues inherent in the discussion of sedation at end of life require not that we have the answers but rather that we work with our colleagues to raise relevant questions and integrate both expertise and compassion into end-of-life decisions and care.