Expanding the Catalog of Patient and Caregiver Out-of-Pocket Costs: A Systematic Literature Review.

Out-of-pocket (OOP) health care expenditures in the United States have increased significantly in the past 5 decades. Most research on OOP costs focuses on expenditures related to insurance and cost-sharing payments or on costs related to specific conditions or settings, and does not capture the full picture of the financial burden on patients and unpaid caregivers. The aim for this systematic literature review was to identify and categorize the multitude of OOP costs to patients and unpaid caregivers, aid in the development of a more comprehensive catalog of OOP costs, and highlight potential gaps in the literature. The authors found that OOP costs are multifarious and underestimated. Across 817 included articles, the authors identified 31 subcategories of OOP costs related to direct medical (eg, insurance premiums), direct nonmedical (eg, transportation), and indirect spending (eg, absenteeism). In addition, 42% of articles studied an expenditure that the authors did not label as "OOP." A holistic and comprehensive catalog of OOP costs can inform future research, interventions, and policies related to financial barriers to health care in the United States to ensure the full range of costs for patients and unpaid caregivers are acknowledged and addressed.

Respecting Choices and Related Models of Advance Care Planning: A Systematic Review of Published Evidence.

All individuals should receive care consistent with their expressed preferences during serious and chronic illnesses. Respecting Choices (RC) is a well-known model of advance care planning intended to assist individuals consider, choose, and communicate these preferences to health-care providers. In this systematic review, we evaluated the published literature on the outcomes of the RC and derivative models utilizing criteria developed by the Cochrane Collaborative. Eighteen articles from 16 studies were included, of which 9 were randomized controlled trials, 6 were observational, and 1 was a pre-posttest study. Only 2 specifically included a minority population (African American). Fourteen were conducted in the United States, primarily in the Wisconsin/Minnesota region (n = 8). Seven studies examined the RC model, whereas 9 examined derivative models. There was significant heterogeneity of outcomes examined. We found that there is a low level of evidence that RC and derivative models increase the incidence and prevalence of Advance Directive and Physician Orders for Life-Sustaining Treatment completion. There is a high level of evidence that RC and derivative models increase patient-surrogate congruence in Caucasian populations. The evidence is mixed, inconclusive, and too poor in quality to determine whether RC and derivative models change the consistency of treatment with wishes and overall health-care utilization in the end of life. We urge further studies be conducted, particularly with minority populations and focused on the outcomes of preference-congruent treatment and health-care utilization.

Achieving a High-Quality Cancer Care Delivery System for Older Adults: Innovative Models of Care.

OBJECTIVES: To examine innovative models and other research-based interventions that hold potential to assure high-quality care for the growing older adult population living with cancer as one of multiple chronic conditions. Evidence from these care delivery approaches provides a roadmap for the development of future care models. DATA SOURCES: Published peer-reviewed literature, policy analyses, and web-based resources. CONCLUSION: Available evidence suggests the need for models that engage patients and their family caregivers, focus on patient's functional capacities, emphasize palliative care, and maximize the contributions of all team members. IMPLICATIONS FOR NURSING PRACTICE: Nurses are uniquely positioned to lead or play a major role in the evolution and implementation of care models targeting older adults with cancer, but must increase their knowledge and skills related to both oncology and geriatrics to maximize their contributions.

End-of-Life Decision Making and Communication of Bereaved Family Members of African Americans with Serious Illness.

OBJECTIVE: The study objective was to examine factors that influence African American (AA) family members' end-of-life care decision outcomes for a relative who recently died from serious illness. METHODS: A cross-sectional descriptive study design was used. Binary logistic and linear regressions were used to identify factors associated with decision regret and decisional conflict. Forty-nine bereaved AA family members of AA decedents with serious illness who died two to six months prior to enrollment were recruited from the palliative care program in a safety net hospital and a metropolitan church in the Midwest. Measurements used were the Decisional Conflict, Decision Regret, Beliefs and Values, and Quality of Communication scales. RESULTS: Family members who reported higher quality of communication with health care providers had lower decisional conflict. Family members of decedents who received comfort-focused care (CFC) had significantly less decision regret than family members of those who received life-prolonging treatment (LPT). Family members who reported stronger beliefs and values had higher quality of communication with providers and lower decisional conflict. CONCLUSIONS: This research adds to a small body of literature on correlates of end-of-life decision outcomes among AAs. Although AAs' preference for aggressive end-of-life care is well-documented, we found that receipt of CFC was associated with less decision regret. To reduce decisional conflict and decision regret at the end of life, future studies should identify strategies to improve family member-provider communication, while considering relevant family member and decedent characteristics.

Use of the Physician Orders for Life-Sustaining Treatment program for patients being discharged from the hospital to the nursing facility.

BACKGROUND: The Physician Orders for Life-Sustaining Treatment (POLST) documents patient preferences as medical orders that transfer across settings with patients. OBJECTIVES: The objectives were to pilot test methods and gather preliminary data about POLST including (1) use at time of hospital discharge, (2) transfers across settings, and (3) consistency with prior decisions. STUDY DESIGN: Descriptive with chart abstraction and interviews. PARTICIPANTS: Participants were hospitalized patients discharged to a nursing facility and/or their surrogates in La Crosse County, Wisconsin. MEASUREMENTS: POLST forms were abstracted from hospital records for 151 patients. Hospital and nursing facility chart data were abstracted and interviews were conducted with an additional 39 patients/surrogates. RESULTS: Overall, 176 patients had valid POLST forms at the time of discharge from the hospital, and many (38.6%; 68/176) only documented code status. When the whole POLST was completed, orders were more often marked as based on a discussion with the patient and/or surrogate than when the form was used just for code status (95.1% versus 13.8%, p<.001). In the follow-up and interview sample, a majority (90.6%; 29/32) of POLST forms written in the hospital were unchanged up to three weeks after nursing facility admission. Most (71.9%; 23/32) appeared consistent with patient or surrogate recall of prior treatment decisions. CONCLUSION: POLST forms generated in the hospital do transfer with patients across settings, but are often used only to document code status. POLST orders appeared largely consistent with prior treatment decisions. Further research is needed to assess the quality of POLST decisions.

Computer-delivered tailored intervention improves colon cancer screening knowledge and health beliefs of African-Americans.

We conducted a randomized controlled trial among African-American patients attending a primary-care provider visit to compare efficacy of a computer-delivered tailored intervention to increase colorectal cancer (CRC) screening (n = 273) with non-tailored print material-an American Cancer Society brochure on CRC screening (n = 283). Health Belief Model constructs were used to develop tailored messages and examined as outcomes. Analysis of covariance models were used to compare changes between CRC knowledge and health belief scores at baseline and 1 week post-intervention. At 1 week, patients who received the computer-delivered tailored intervention had greater changes in CRC knowledge scores (P < 0.001), perceived CRC risk scores (P = 0.005), FOBT barriers scores (P = 0.034) and colonoscopy benefit scores (P < 0.001). Findings show that computer-delivered tailored interventions are an effective adjunct to the clinical encounter that can improve knowledge and health beliefs about CRC screening, necessary precursors to behavior change.

Comparison of patients' assessments of the quality of stroke care with audit findings.

OBJECTIVE: To determine the extent of correlation between stroke patients' experiences of hospital care with the quality of services assessed in a national audit. METHODS: Patients' assessments of their care derived from survey data were linked to data obtained in the National Sentinel Stroke Audit 2004 for 670 patients in 51 English NHS trusts. A measure of patients' experience of hospital stroke care was derived by summing responses to 31 survey items and grouping these into three broad concept domains: quality of care; information; and relationships with staff. Audit data were extracted from hospital admissions data and management information to assess the organisation of services, and obtained retrospectively from patient records to evaluate the delivery of care. Patient survey responses were compared with audit measures of organisation of care and compliance with clinical process standards. RESULTS: Patient experience scores were positively correlated with clinicians' assessment of the organisational quality of stroke care, but were largely unrelated to clinical process standards. Responses to individual questions regarding communication about diagnosis revealed a discrepancy between clinicians' and patients' reports. CONCLUSIONS: Better organised stroke care is associated with more positive patient experiences. Examining areas of disparity between patients' and clinicians' reports is important for understanding the complex nature of healthcare and for identifying areas for quality improvement. Future evaluations of the quality of stroke services should include a validated patient experience survey in addition to audit of clinical records.