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BACKGROUND - Older adults with advanced CKD have significant pain, other symptoms, and disability. To help ensure that care is consistent with patients' values, nephrology providers should understand their patients' priorities when they make clinical recommendations.
METHODS - Patients aged ≥60 years with advanced (stage 4 or 5) non-dialysis-dependent CKD receiving care at a CKD clinic completed a validated health outcome prioritization tool to ascertain their health outcome priorities. For each patient, the nephrology provider completed the same health outcome prioritization tool. Patients also answered questions to self-rate their health and completed an end-of-life scenarios instrument. We examined the associations between priorities and self-reported health status and between priorities and acceptance of common end-of-life scenarios, and also measured concordance between patients' priorities and providers' perceptions of priorities.
RESULTS - Among 271 patients (median age 71 years), the top health outcome priority was maintaining independence (49%), followed by staying alive (35%), reducing pain (9%), and reducing other symptoms (6%). Nearly half of patients ranked staying alive as their third or fourth priority. There was no relationship between patients' self-rated health status and top priority, but acceptance of some end-of-life scenarios differed significantly between groups with different top priorities. Providers' perceptions about patients' top health outcome priorities were correct only 35% of the time. Patient-provider concordance for any individual health outcome ranking was similarly poor.
CONCLUSIONS - Nearly half of older adults with advanced CKD ranked maintaining independence as their top heath outcome priority. Almost as many ranked being alive as their last or second-to-last priority. Nephrology providers demonstrated limited knowledge of their patients' priorities.
Copyright © 2018 by the American Society of Nephrology.
OBJECTIVE - To identify sources of general and mental health information for rural women to inform the development of public health nursing interventions that consider preferences for obtaining information.
DESIGN AND SAMPLE - One thousand women (mean age = 57 years; 96.9% White) living in primarily nonmetropolitan areas of Western Kentucky participated via a random-digit-dial survey.
MEASURES - Data were collected on demographics, sources of health information, depression, and stigma.
RESULTS - Most participants preferred anonymous versus interpersonal sources for both general (68.1%) and mental health (69.4%) information. All participants reported at least one source of general health information, but 20.8% indicated not seeking or not knowing where to seek mental health information. The Internet was the most preferred anonymous source. Few women cited health professionals as the primary information source for general (11.4%) or mental (9.9%) health. Public stigma was associated with preferring anonymous sources and not seeking information.
CONCLUSIONS - Public health nurses should understand the high utilization of anonymous sources, particularly for mental health information, and focus efforts on helping individuals to navigate resources to ensure they obtain accurate information about symptoms, effective treatments, and obtaining care. Reducing stigma should remain a central focus of prevention and education in rural areas.
© 2014 Wiley Periodicals, Inc.
This study was conducted to explore whether racial/ethnic differences exist in treatment discussed, preferred, and ultimately received for localized prostate cancer (PCa) as epidemiological data are scant on this issue. The authors recruited 640 localized PCa patients from the Texas Medical Center, Houston, Texas, between 1996 and 2004. The authors used a structured questionnaire to collect data through personal interviews. Three main treatment modalities for localized PCa, consisting of surgery, radiation therapy, and watchful waiting, were considered for this study. It was found that health professionals were less likely to discuss surgery (odds ratio [OR] = 0.35, 95% confidence interval [CI] = 0.18-0.68) and watchful waiting (OR = 0.53, 95% CI = 0.34-0.83) with Hispanics than Whites. However, African Americans were less likely to receive watchful waiting (OR = 0.22, 95% CI = 0.05-0.93). They were more likely to prefer (OR = 1.23, 95% CI = 0.78-1.94) and receive (OR = 1.27, 95% CI = 0.87-1.86) radiation therapy, although they did not achieve statistical significance (p < .05). Higher age was associated with lower likelihood of discussing, preferring, and receiving surgical treatment. Higher Gleason sum was associated with lower likelihood of discussing treatment. A comparison of concordances between treatment preferred by patients and what was actually received, in general, showed a higher agreement for surgery and radiation therapy. More exploration needs to be done in other settings to confirm these findings.
The relationship between limited health literacy and poor health may be due, in part, to poor communication quality within health care delivery organizations. We explored the relationship between health literacy status and receiving patient-centered communication in clinics and hospitals serving communication-vulnerable patient populations. Thirteen health care organizations nationwide distributed a survey to 5929 patients. All patients completed seven items assessing patient-centered communication. One third also completed three items assessing health literacy. The majority of patients had self-reported health literacy challenges, reporting problems learning about their medical condition because of difficulty understanding written information (53%), a lack of confidence in completing medical forms by themselves (61%), and needing someone to help them read hospital/clinic materials (57%). Logistic regression models showed that, after adjustment for patient demographic characteristics and health care organization type, patients with limited health literacy were 28% to 79% less likely than those with adequate health literacy to report their health care organization "always" provides patient-centered communication across seven communication items. Using a scaled composite of these items, limited health literacy remained associated with lower reported communication quality. These results suggest that improving communication quality in health care organizations might help to address the challenges facing patients with limited health literacy. They also highlight that efforts to address the needs of patients with limited health literacy should be sensitive to the range of communication challenges confronting these patients and their caregivers.
The authors describe a pragmatic approach to the introduction of clinical decision support at the point of care, based on a decade of experience in developing and evolving Vanderbilt's inpatient "WizOrder" care provider order entry (CPOE) system. The inpatient care setting provides a unique opportunity to interject CPOE-based decision support features that restructure clinical workflows, deliver focused relevant educational materials, and influence how care is delivered to patients. From their empirical observations, the authors have developed a generic model for decision support within inpatient CPOE systems. They believe that the model's utility extends beyond Vanderbilt, because it is based on characteristics of end-user workflows and on decision support considerations that are common to a variety of inpatient settings and CPOE systems. The specific approach to implementing a given clinical decision support feature within a CPOE system should involve evaluation along three axes: what type of intervention to create (for which the authors describe 4 general categories); when to introduce the intervention into the user's workflow (for which the authors present 7 categories), and how disruptive, during use of the system, the intervention might be to end-users' workflows (for which the authors describe 6 categories). Framing decision support in this manner may help both developers and clinical end-users plan future alterations to their systems when needs for new decision support features arise.
Melanie's case and the associated concerns are not unique. Children with life-threatening conditions and their families and communities may benefit from a family-centered model of pediatric palliative care. Benefits from its implementation are not just at the end of life, but throughout the course of therapy. Compassion coupled with a holistic approach incorporating humane and family-centered care is essential in meeting physical, mental, and spiritual needs. An interdisciplinary and collaborative model of pediatric palliative care involves the work of many, including nurses, physicians, social workers, chaplains, child life specialists, pharmacists, ethicists, bereavement counselors, ancillary staff, volunteers, and families themselves. They must incorporate key elements of the model, including clinical services, education and training, support services, and research that address physical, mental, and spiritual needs of families, children, and communities faced with life-threatening conditions.