Improving End-of-Life Care for Persons Living With Dementia: Bereaved Caregivers' Observations and Recommendations.

CONTEXT: Dementia is a terminal diagnosis that requires significant caregiving support across the trajectory of decline through to death. Experiences and perspectives from bereaved caregivers can help identify ways to improve the end-of-life care experience of persons dying with dementia. OBJECTIVES: This exploratory study sought to assess satisfaction with, and elicit recommendations for improving end-of-life care experiences of decedents with dementia from the perspective of bereaved caregivers. METHODS: A cross-sectional survey was conducted with caregivers of decedents with dementia (n = 53), from the San Francisco Bay Area, California. Multiple choice and open-ended questions were asked regarding end-of-life care discussions and decisions and respecting and honoring end-of-life needs and wishes. The Satisfaction with Care at the End of Life in Dementia instrument was adapted for the survey. RESULTS: While approximately 75% of caregivers were satisfied with their person living with dementia's (PLWD) end-of-life care, 25% felt better care was needed. Qualitative findings revealed that gaps persist regarding communication with providers about disease progression, care continuity and coordination, and honoring death in a preferred location. While most caregivers felt ready to discuss end-of-life decisions with providers when their PLWD was near death, with retrospection, the majority would recommend that providers discuss end-of-life decisions with them during earlier stages of the disease. CONCLUSION: End-of-life care for PLWD has significant room for improvement. Efforts to train healthcare providers should focus on helping them meet the complex informational, emotional, and social support needs of PLWD and their caregivers across the trajectory of decline.

Health literacy assessment: Translation and cultural adaptation to the Portuguese population.

RATIONALE, AIMS, AND OBJECTIVES: Health literacy (HL) has been widely referenced as a determinant of health outcomes, making the assessment of low HL a fundamental step to plan educational interventions. This study aimed to translate and adapt the Short Assessment of Health Literacy-Spanish and English (SAHL-S&E) questionnaire into European Portuguese. METHODS: The SAHL-S&E questionnaire was translated using the recommendations of the International Society for Pharmacoeconomics and Outcomes Research. One hundred fifty-three Portuguese native speakers aged over 18 years old were included in this study, enrolled among users of community pharmacies in the Algarve region (Portugal). RESULTS: The translation of the questionnaire used showed a good internal consistency (Cronbach α: .812), and a statistically significant (F = 5.05 P < .001) interrater reliability. Over a third of subjects (37.9%) achieved a score less than or equal to 14, which is indicative of low HL. CONCLUSION: This tool, intended to be used in the European Portuguese population, can be used for low HL screening.

Chryseobacterium pennipullorum sp. nov., isolated from poultry feather waste.

Strain 7_F195T was previously isolated from chicken feather waste collected from an abattoir in Bloemfontein, South Africa. A polyphasic approach was followed to determine if strain 7_F195T belongs to the genus Chryseobacterium and if the organism can be classified as a new species. The nearest neighbours, based on 16S rRNA gene sequence similarity values (indicated in parentheses), were Chryseobacterium flavum KCTC 12877T (98.42 %), Chryseobacterium indologenesLMG 8337T (98.24 %) and Chryseobacterium gleum ATCC 35910T (97.71 %). Genome sequencing revealed a genome size of 4 796 535 bp and a DNA G+C content of 38.6 mol%. The ANI values of strain 7_F195T compared to C. flavum, C. indologenesand C. gleum were 81.45, 81.86 and 82.38 %, respectively. The digital DNA-DNA hybridization values for strain 7_F195T with C. flavum, C. indologenes and C. gleum were 23.7, 23.7 and 24.9 %, respectively. Notable phenotypic differences include the presence of urease activity in C. indologenes LMG 8337T and C. gleum NCTC 11432T, but not in strain 7_F195T or C. flavum KCTC 12877T. The predominant fatty acids of strain 7_F195T were iso-C15 : 0, iso-C17 : 1ω9c and iso-C17 : 0 3-OH and the most abundant polar lipid was phosphatidylethanolamine. Menaquinone-6 was the only respiratory quinone. Based on the data generated from this polyphasic study, strain 7_F195T represents a novel Chryseobacterium species for which the name Chryseobacteriumpennipullorum sp. nov. is proposed. The type strain is 7_F195T (=LMG 30781T=KCTC 62760T).

Work activities and musculoskeletal discomforts amongst active older Albertans on alternative employment trajectories.

BACKGROUND: Bridge employment (scheduled paid work after retirement age) may promote successful aging and continued health, as work can be an important component of daily physical activity. Appropriate work demands for older adults are neither well-established nor well-applied, however, and excessive loading or increased perceptions of discomfort may negate the health benefits of work activity. OBJECTIVE: This study examined work status and musculoskeletal discomfort (MSD) amongst older Albertans. METHODS: 1044 Albertans aged 55 years and older participating in an organized 'Games' received a research package. Enclosed in the package were an introductory letter, a return envelope, and modified versions of validated questionnaires examining leisure and work activities, activity frequency, and perceptions of musculoskeletal health. RESULTS: 228 respondents were classified into one of three employment trajectory groups: fully retired, fully employed, or bridge employed. Groups differed in age, and both employed groups more frequently reported MSDs in all body areas. Bridge employed reported increased 'occasional' frequency of musculoskeletal injury risk factors, while both groups reported similar overall ratings of work-related exertion. CONCLUSIONS: The increased MSDs reported by bridge employed adults may be the result of irregularity of work activity and soft tissue loading. Detailed examination of work demands and musculoskeletal injuries amongst bridge employed adults could help define safer levels for less regular work activity.

Developing novel prognostic biomarkers for multivariate fracture risk prediction algorithms.

Multivariate prediction algorithms such as FRAX® and QFractureScores provide an opportunity for new prognostic biomarkers to be developed and incorporated, potentially leading to better fracture prediction. As more research is conducted into these novel biomarkers, a number of factors need to be considered for their successful development for inclusion in these algorithms. In this review, we describe two well-known multivariate prediction algorithms for osteoporosis fracture risk applicable to the UK population, FRAX and QFractureScores, and comment on the current prognostic tools available for fracture risk; dual X-ray assessment, quantitative ultrasonography, and genomic/biochemical markers. We also highlight the factors that need to be considered in the development of new biomarkers. These factors include the requirement for prospective data, collected in new cohort studies or using archived samples; the need for adequate stability data to be provided; and the need for appropriate storage methods to be used when retrospective data are required. Area under the receiver operating characteristic curve measures have been found to have limited utility in assessing the impact of the addition of new risk factors on the predictive performance of multivariate algorithms. New performance evaluation measures, such as net reclassification index and integrated discrimination improvement, are increasingly important in the evaluation of the impact of the addition of new markers to multivariate algorithms, and these are also discussed.

An Evaluation of the Advanced Illness Management (AIM) Program: Increasing hospice utilization in the San Francisco Bay area.

BACKGROUND: In the Medicare population, end-of-life care is fragmented and hospice is underutilized. Evidence suggests that hospice care is associated with increased patient/family satisfaction and reductions in overall health care costs. Advanced Illness Management (AIM) is a home-based program established to ease the transition between curative and comfort care for seriously ill patients who lack coordinated hospital, home health, and hospice care. OBJECTIVE: Measure the impact of the AIM program on the discharge disposition of participating home health patients. DESIGN: Retrospective cohort study. SETTING/SUBJECTS: A total of 435 patients who received home health services through the Sutter Visiting Nurse Association and Hospice (SVNA&H) and who were discharged between 2003 and September 2005 were included in this study. Participants were selected based on a life expectancy of 6 months or less and additionally matched on prognosis of current episode of illness and symptom status. Intervention patients were compared to those receiving usual home health care at two SVNA&H branches. RESULTS: In the within-branch comparison, a 28% difference was observed in the number of hospice referrals between patients who received the AIM intervention and Usual Care I (47% AIM; 33% UCI, p = 0.003). When patients receiving the AIM intervention were compared to patients from another branch, Usual Care II, a 67% difference emerged (47% AIM; 16% UCII, p < 0.0001). Among African American patients, 60% and 73% more patients were referred to hospice when AIM patients were compared to Usual Care I and Usual Care II patients, respectively (p < 0.01). These differences persisted after controlling for symptom status, patient demographics and home health length of stay. CONCLUSIONS: The AIM program was successful at increasing hospice utilization through a targeted intervention focused on palliative and end-of-life care, increased patient education and decision making, and a dynamic treatment approach. The finding of increased utilization by African Americans, a population traditionally reluctant to use hospice, was particularly noteworthy.

Electronic medical records in solo/small groups: a qualitative study of physician user types.

BACKGROUND: There is growing recognition that physician use of electronic medical records (EMRs) is critical for improving quality of care in outpatient settings. METHODS: We inter-viewed EMR physician champions from 20 solo/small group practices to understand different types of EMR users and their EMR-related costs and benefits. RESULTS: Interviewees differed greatly in the EMR-related benefits they generated. These differences were associated with how they used the EMR, and the amount of effort they invested in making changes to complement EMR use. We defined five types of physician EMR users: Viewers, Basic Users, Strivers, Arrivers, and System Changers. The majority of interviewees were Strivers and Arrivers, physicians who have already invested substantial time in numerous process changes that help generate EMR-related benefits. CONCLUSIONS: Incentives and comprehensive support services for facilitating complementary process changes could be important for moving physicians from one user group to another. Additional research is needed to verify this user typology and to further define the relationship between user types and EMR-generated financial and quality benefits.

Does racial bias exist in the medical management of heart failure?

BACKGROUND: It is suspected that effective therapies are often underutilized in black compared with white patients with coronary artery disease (CAD). HYPOTHESIS: We hypothesized that an unfavorable bias may exist against black patients in the medical management of heart failure. METHODS: In 566 consecutive adult subjects who were discharged alive from the hospital with a principal discharge diagnosis of heart failure, we assessed the effect of patient race on utilization of classes of medications (angiotensin-converting enzyme inhibitors [ACEI], digitalis, diuretic agents) and combinations of medications (effective vasodilators, i.e., ACEI or combined hydralazine and nitrate; effective combination therapy, i.e., effective vasodilator with digitalis and diuretic) known to be beneficial in symptomatic heart failure. RESULTS: Compared with black patients (n = 182), white patients were older, had a higher incidence of coronary artery disease, lower incidence of hypertension, and lower serum creatinine and left ventricular end-diastolic diameter. In crude analyses, the utilization of all medications was similar between white and black patients. After adjustment for clinical differences, black patients were more likely to receive ACEI (adjusted odds ratio [OR] = 1.84; 95% confidence interval [CI] 1.13-3.01), effective vasodilators (OR = 1.97; CI 1.20-3.23), and effective combination therapy (OR = 1.66; CI 1.02-2.69) than white patients at the time of discharge from the hospital. No multivariate association was seen between patient race and use of digoxin or diuretics. In an analysis of subsets of patients with ejection fraction < 45% (n = 260), no association was seen between patient race and utilization of effective medical therapy. CONCLUSION: Our results show no unfavorable bias against black patients with decompensated heart failure.