Provider perspectives on chronic kidney disease diagnosis delivery
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AIMS: Lack of clear provider communication has been suggested as a reason for low patient awareness of their chronic kidney disease (CKD) diagnosis. Using quality improvement methods, we performed one-on-one provider interviews about CKD diagnosis delivery. MATERIALS AND METHODS: Interviews were audio-recorded, transcribed, and examined using mixed methods. We used thematic analysis to code and analyze transcripts, and Fisher's exact test to examine differences comparing nephrologist and primary care provider (PCP) perspectives. RESULTS: 24 providers completed interviews (18 nephrologists, 6 PCPs). Four themes emerged (N = 260 statements): 1) perspectives informing patients about CKD diagnosis (37 statements), 2) timing of diagnosis messaging (38 statements), 3) language used to convey diagnosis (42 statements), and 4) challenges in diagnosis delivery (143 statements). Most agreed that patients should be informed of their CKD (87.5%), but only 76% believed that communication should occur early. Terminology was not unified; half of nephrology providers used the term "Chronic Kidney Disease" to explain diagnosis. No PCPs used this terminology. Challenges to CKD diagnosis delivery included: Kidney disease is perceived as difficult to explain, lack of provider time, lack of patient symptoms, patient denial of disease, and low public awareness of CKD. CONCLUSIONS: Providers' views on informing patients of their CKD diagnosis were not unified, in particular with respect to timing and terminology of diagnosis delivery. More work is needed to address barriers to efficiently and effectively convey CKD diagnosis information.
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A diagnosis of chronic kidney disease: despite fears patients want to know early.

AIMS: We elicited input from patients on their experience getting a chronic kidney disease (CKD) diagnosis to use for optimizing current CKD education interventions. METHODS: We performed structured oneon-one patient interviews. Interviews were recorded, transcribed, and coded using modified grounded theory. Participants had CKD, were not on dialysis, and were recruited from general nephrology practices. RESULTS: 49 patients enrolled from January to October 2014. Interviews revealed four major themes: 1. Reaction to diagnosis - patients described emotional reactions and subsequent behavior changes (152 statements); 2. Timing of diagnosis - patients described how they were told about their diagnosis and expectations of when a person should be told (149 statements); 3. Mediators in diagnosis delivery - patients discussed things that helped or hindered understanding and acceptance of their diagnosis (64 statements), and 4. Perceptions of diagnosis terminology - patients discussed perceptions about diagnostic terms (e.g., "chronic kidney disease") (91 statements). Cross-sectional study design and setting limit interpretation of causality and generalizability. CONCLUSIONS: Patients experience fear but prefer early diagnosis communication. More work is needed to define evidence-based guidelines for diagnosis messaging across the spectrum of care.

Pilot test of a patient decision aid about liver transplant organ quality.

Prior studies have shown that patients are reluctant to accept donor-specific risks, and transplant professionals lack an effective and time-efficient means of obtaining informed consent. We designed and pilot-tested a Web-based patient decision aid (DA) on organ quality. The DA was administered to 53 liver transplant candidates (median Model for End-Stage Liver Disease score = 14, range = 7-26), and they took a mean of 15 minutes to complete it. Questions about knowledge and attitudes were asked before and after the DA. Subjects' knowledge improved, with 53% and 60% correctly answering questions about hepatitis B virus and human immunodeficiency virus transmission before the DA and 94% and 100%, respectively, correctly answering them afterward (P < 0.001). The accuracy of mortality prediction also improved from a mean 3-month mortality estimate of 22% before the DA to 12% afterward (P < 0.001). After the DA, subjects felt that it was more likely that they might be offered a less-than-perfect liver (P = 0.001), and they were more likely to consider accepting such a liver (P < 0.001). In conclusion, implementing a Web-based patient DA is feasible and improves knowledge among liver transplant candidates. The use of this tool may decrease candidates' reluctance to accept extended criteria organs.

Systematic bias in surgeons' predictions of the donor-specific risk of liver transplant graft failure.

The decision to accept or decline a liver allograft for a patient on the transplant waiting list is complex. We hypothesized that surgeons are not accurate at predicting donor-specific risks. Surgeon members of the American Society of Transplant Surgeons were invited to complete a survey in which they predicted the 3-year risk of graft failure for a 53-year-old man with alcoholic cirrhosis and a Model for End-Stage Liver Disease score of 21 with a liver from (1) a 30-year-old local donor with traumatic brain death or (2) a 64-year-old regional donor with brain death from a stroke. Complete responses were obtained from 201 surgeons, whose self-reported case volume represents the majority of liver transplants in the United States. The surgeon-predicted 3-year risk of graft failure varied widely (more than 10-fold). In scenario 1, 90% of the respondents provided lower estimates of the graft failure risk than the literature-derived estimate of 21% (P < 0.001). In scenario 2, 96% of the responses were lower than the literature-derived estimate of 40% (P < 0.001). In conclusion, transplant surgeons vary widely in their predictions of the donor-specific risk of graft failure, and they demonstrate a systematic bias toward inaccurately low estimates of graft failure, particularly for higher risk organs.

Surrogate Decision Makers' Perspectives on Family Members' Prognosis after Intracerebral Hemorrhage.

BACKGROUND: Surrogate communication with providers about prognosis in the setting of acute critical illness can impact both patient treatment decisions and surrogate outcomes. OBJECTIVES: To examine surrogate decision maker perspectives on provider prognostic communication after intracerebral hemorrhage (ICH). DESIGN: Semistructured interviews were conducted and analyzed qualitatively for key themes. SETTING/SUBJECTS: Surrogate decision makers for individuals admitted with ICH were enrolled from five acute care hospitals. RESULTS: Fifty-two surrogates participated (mean age = 54, 60% women, 58% non-Hispanic white, 13% African American, 21% Hispanic). Patient status at interview was hospitalized (17%), in rehabilitation/nursing facility (37%), deceased (38%), hospice (4%), or home (6%). Nineteen percent of surrogates reported receiving discordant prognoses, leading to distress or frustration in eight cases (15%) and a change in decision for potentially life-saving brain surgery in three cases (6%). Surrogates were surprised or confused by providers' use of varied terminology for the diagnosis (17%) (e.g., "stroke" vs. "brain hemorrhage" or "brain bleed") and some interpreted "stroke" as having a more negative connotation. Surrogates reported that physicians expressed uncertainty in prognosis in 37%; with physician certainty in 56%. Surrogate reactions to uncertainty were mixed, with some surrogates expressing a negative emotional response (e.g., anxiety) and others reporting understanding or acceptance of uncertainty. CONCLUSIONS: Current practice of prognostic communication in acute critical illness has many gaps, leading to distress for surrogates and variability in critical treatment decisions. Further work is needed to limit surrogate distress and improve the quality of treatment decisions.

Development of the Medical Maximizer-Minimizer Scale.

OBJECTIVE: Medical over- and underutilization are central problems that stand in the way of delivering optimal health care. As a result, one important question is how people decide to take action, versus not, when it comes to their health. The present article proposes and validates a new measure that captures the extent to which individuals are "medical maximizers" who are predisposed to seek health care even for minor problems, versus "medical minimizers" who prefer to avoid medical intervention unless it is necessary. METHOD: Studies 1-3 recruited participants using Amazon's Mechanical Turk. Study 1 conducted exploratory factor analysis (EFA) to identify items relevant to the proposed construct. In Study 2 confirmatory factor analysis (CFA) was conducted on the identified items, as well as tests of internal, discriminant, and convergent validity. Study 3 examined test-retest reliability of the scale. Study 4 validated the scale in a non-Internet sample. RESULTS: EFA identified 10 items consistent with the proposed construct, and subsequent CFA showed that the 10 items were best understood with a bifactor model that assessed a single underlying construct consistent with medical maximizing-minimizing, with 3 of the 10 items cross-loading on another independent factor. The scale was distinct from hypochondriasis, distrust in medicine, health care access, and health status, and predicted self-reported health care utilization and a variety of treatment preferences. CONCLUSIONS: Individuals have general preferences to maximize versus minimize their use of health care, and these preferences are predictive of health care utilization and treatment preferences across a range of health care contexts. (PsycINFO Database Record

Variability in physician prognosis and recommendations after intracerebral hemorrhage.

OBJECTIVE: To assess physician prognosis and treatment recommendations for intracerebral hemorrhage (ICH) and to determine the effect of providing physicians a validated prognostic score. METHODS: A written survey with 2 ICH scenarios was completed by practicing neurologists and neurosurgeons. Selected factors were randomly varied (patient older vs middle age, Glasgow Coma Scale [GCS] score 7T vs 11, and presence vs absence of a validated prognostic score). Outcomes included predicted 30-day mortality and recommendations for initial treatment intensity (6-point scale ranging from 1 = comfort only to 6 = full treatment). RESULTS: A total of 742 physicians were included (mean age 52, 32% neurosurgeons, 17% female). Physician predictions of 30-day mortality varied widely (mean [range] for the 4 possible combinations of age and GCS were 23% [0%-80%], 35% [0%-100%], 48% [0%-100%], and 58% [5%-100%]). Treatment recommendations also varied widely, with responses encompassing the full range of response options for each case. No physician demographic or personality characteristics were associated with treatment recommendations. Providing a prognostic score changed treatment recommendations, and the effect differed across cases. When the prognostic score suggested 0% chance of functional independence (76-year-old with GCS 7T), the likelihood of treatment limitations was increased (odds ratio [OR] 1.61, 95% confidence interval [CI] 1.12-2.33) compared to no prognostic score. Conversely, if the score suggested a 66% chance of independence (63-year-old with GCS 11), treatment limitations were less likely (OR 0.62, 95% CI 0.43-0.88). CONCLUSIONS: Physicians vary substantially in ICH prognostic estimates and treatment recommendations. This variability could have a profound effect on life and death decision-making and treatment for ICH.