A Theory of Aesthetic Justice

Theories of distributive justice give us the appropriate determination of who ought to have what, where ?who? are the members of society and ?what? are social goods and burdens. Traditionally, social goods have taken the form of rights and privileges, as well as more tangible economic goods. However, it is not clear that these are the only kinds of social goods relevant to justice. There is a substantial body of literature showing that environmental benefits and burdens can and should be thought of as social goods. In this paper, I will argue that we ought to make a comparable extension for aesthetic benefits and burdens. Specifically, I will show that aesthetic goods are objects of significant public interest, and therefore must be subject to our principles of justice. I begin by explaining and evaluating a theory of aesthetic justice offered by Monroe Beardsley. I will expand this theory by showing its broad applicability to myriad examples, especially to aesthetic objects in nature. Then I will show that this theory is compatible with two leading conceptions of justice: John Rawls?s liberal conception and Michael Walzer?s communitarian conception. In doing so, I will show that the theory of aesthetic justice must be taken seriously by those who have these philosophical commitments

Vascular access-specific health-related quality of life impacts among hemodialysis patients: qualitative development of the hemodialysis access-related quality of life (HARQ) instrument.

BackgroundEnd stage kidney disease and hemodialysis dependence are associated with impairments in health-related quality of life (HRQOL), which may be related to vascular access (VA). Few HRQOL measures are VA-specific and none differentiate HRQOL impact by VA type. We developed a VA-targeted HRQOL measure to distinguish the impact of fistulas, grafts and catheters.MethodsWe created an initial item pool based on literature review and then conducted focus groups at 4 US sites with 37 adults and interviews with nine dialysis clinicians about VA's impact on HRQOL. We then drafted the Hemodialysis Access-Related Quality of Life (HARQ) measure and cognitively tested it with 17 hemodialysis patients. Focus group and cognitive interview participants were diverse in age, gender, years on dialysis, and VA.ResultsWe identified six domains for the HARQ: symptoms, physical functioning, emotional impacts, social and role functioning, sleep, and care-related burdens. Cognitive interviews indicated that items were easily understood and supported content validity. Attributing HRQOL impact to VA as opposed to other hemodialysis burden was challenging for some items. Some items were dropped that were considered redundant by patients, limitations while dressing was added, and reference to VA-specific impact was included for each item. The average Flesch-Kincaid reading grade level for the revised 47-item HARQ was 5.3.ConclusionsThe HARQ features VA-specific content not addressed in other HRQOL measures, making it ideal for comparisons of different VA types and new VA technologies. The psychometric properties of the HARQ will be evaluated in future research

Advancing patient-centric care: integrating patient reported outcomes for tolerability assessment in early phase clinical trials – insights from an expert virtual roundtable

Early phase clinical trials provide an initial evaluation of therapies’ risks and benefits to patients, including safety and tolerability, which typically relies on reporting outcomes by investigator and laboratory assessments. Use of patient-reported outcomes (PROs) to inform risks (tolerability) and benefits (improvement in disease symptoms) is more common in later than early phase trials. We convened a two-day expert roundtable covering: (1) the necessity and feasibility of a universal PRO core conceptual model for early phase trials; (2) the practical integration of PROs in early phase trials to inform tolerability assessment, guide dose decisions, or as real-time safety alerts to enhance investigator-reported adverse events. Participants (n = 22) included: patient advocates, regulators, clinicians, statisticians, pharmaceutical representatives, and PRO methodologists working across diverse clinical areas. In this manuscript, we report major recommendations resulting from the roundtable discussions corresponding to each theme. Additionally, we highlight priority areas necessitating further investigation

A Psychometric Analysis of Patient-Reported Outcomes in Chronic Kidney Disease

ABSTRACT OF THE DISSERTATIONA Psychometric Analysis of Patient-Reported Outcomes in Chronic Kidney DiseasebyJohn Devin PeipertDoctor of Philosophy in Public HealthUniversity of California, Los Angeles, 2017Professor Donald Morisky, ChairBackground: Survival is a critical outcome in chronic kidney disease (CKD), but it provides a limited view of how well patients are doing. Many aspects of patients’ health can only be obtained by patient reported measures (PRMs), such as health-related quality of life (HRQOL). This dissertation examines the psychometric properties of currently used PRMs in chronic kidney disease (CKD) and make recommendations for how collection and reporting of PRMs can be systematized in the CKD field.Methods: This dissertation used data from three separate sources, each containing kidney patients’ responses to PRMs: treatment decision-making, medication adherence, and HRQOL. The treatment decision-making PRMs examined include patients’ Decisional Balance (perceived Pros and Cons) and Self-Efficacy to pursue both living and deceased donor kidney transplant (LDKT, DDKT; 6 measures in total). The 8-item Morisky Medication Adherence Scale (MMAS-8) was examined as a measure of medication adherence. Finally, the Kidney Disease Quality of Life (KDQOL)-36 was examined as a measure of HRQOL. For each measure, internal consistency reliability was estimated. Dimensional structure was examined with exploratory and confirmatory factor analysis (EFA, CFA) and item-scale correlations, corrected for item overlap. To determine the dimensionality suggested by the exploratory factor analysis, several criteria were used, including the scree “elbow” test, parallel analysis, and the Tucker-Lewis reliability coefficient. For CFA models, model fit was determined with the Satorra-Bentler chi-square, the comparative fit index (CFI), Tucker-Lewis Index (TLI) and root mean square error of approximation (RMSEA). Good model fit is evidenced by a non-significant Satorra-Bentler chi-square, CFI and TLI values of above 0.95, and RMSEA of 0.06 or less. Next, the measurement invariance for each measure was examined between Black and White patients. Finally, recommendations for improvements to each measure were made, including calculations to determine the number of items needed to achieve good (>0.80) and excellent (>0.90) reliability (reliability of >0.70 is considered adequate). Generally, excellent reliability is required for use with individuals.Summary of Results: For both the LDKT and DDKT Pros and Cons measures, 2 correlated factors CFA models fit the data well, verifying the original dimensional structures for these measures. Additionally, the LDKT and DDKT Self-Efficacy measures were supported by single factor CFA models, also supporting their original dimensional structure. However, several of these scales only evidenced adequate internal consistency reliability (LDKT Pros, LDKT Cons, DDKT Cons). These scales would require the addition of up to 15-17 parallel items to achieve excellent reliability (>0.90). Regarding the MMAS-8, the original factor structure was not supported by EFA and CFA models. One item, “Did you take your medicine yesterday?,” was weakly correlated (r<0.243) with the others, and did not load highly (λ<0.40) in EFA models. A CFA model with this item removed fit the data well (RMSEA = 0.06; CFI = 0.99; TLI = 0.98). The internal consistency reliability of the modified scale was 0.78, and 18 items would need to be added to achieve excellent reliability. Finally, regarding the KDQOL-36, the original factor structure was supported, and the internal consistency reliability for each KDQOL-36 scale exceeded the criterion for “good” reliability (>0.80), though the addition of up to 11 items would be required to increase reliability to “excellent” (Symptoms/Problems scale). For all scales in the dissertation, recommendations were made for increasing reliability using classical test theory and item response theory

An Explore Transplant Group Randomized Controlled Education Trial to Increase Dialysis Patients' Decision-Making and Pursuit of Transplantation.

INTRODUCTION:Dialysis centers must provide transplant education to patients but often do not address the risks and benefits of living and deceased donor transplant. RESEARCH QUESTIONS:In a group randomized controlled trial of 20 dialysis centers and 253 patients, we assessed whether the Explore Transplant education program increased patients' readiness to pursue transplant, transplant knowledge, informed transplant decision-making, discussions about transplant with potential living donors, pursuit and receipt of living or deceased donor transplant, and whether these effects varied by race. METHODS:Patients at participating dialysis centers were randomized to receive either (1) a 4-module Explore Transplant education program, including videos, printed materials, and transplant educator discussions or (2) standard-of-care transplant education provided by dialysis centers. The trial had 3 phases: (1) pre- and postsurveying and dialysis center education (2007-2008), (2) follow-up to determine whether patients restarted or began transplant evaluation (2008-2010), and (3) assessment of participants' receipt of a renal transplant (2012-2015). RESULTS:Compared to patients in standard-of-care dialysis centers, patients who received the intervention were more likely to increase in their stage of readiness for living donor transplantation (odds ratio: 2.50; 95% confidence interval: 1.10-5.66), had greater increases in their transplant knowledge ( P < .001), and were more likely to call to restart/begin transplant evaluation (38% vs 24%, P = .006). When analyses were stratified by race, black patients were more likely to take several steps toward transplant in comparison to whites. DISCUSSION:The Explore Transplant helps dialysis patients make informed decisions and increases their pursuit of transplant, particularly among black patients

An Explore Transplant Group Randomized Controlled Education Trial to Increase Dialysis Patients' Decision-Making and Pursuit of Transplantation.

INTRODUCTION:Dialysis centers must provide transplant education to patients but often do not address the risks and benefits of living and deceased donor transplant. RESEARCH QUESTIONS:In a group randomized controlled trial of 20 dialysis centers and 253 patients, we assessed whether the Explore Transplant education program increased patients' readiness to pursue transplant, transplant knowledge, informed transplant decision-making, discussions about transplant with potential living donors, pursuit and receipt of living or deceased donor transplant, and whether these effects varied by race. METHODS:Patients at participating dialysis centers were randomized to receive either (1) a 4-module Explore Transplant education program, including videos, printed materials, and transplant educator discussions or (2) standard-of-care transplant education provided by dialysis centers. The trial had 3 phases: (1) pre- and postsurveying and dialysis center education (2007-2008), (2) follow-up to determine whether patients restarted or began transplant evaluation (2008-2010), and (3) assessment of participants' receipt of a renal transplant (2012-2015). RESULTS:Compared to patients in standard-of-care dialysis centers, patients who received the intervention were more likely to increase in their stage of readiness for living donor transplantation (odds ratio: 2.50; 95% confidence interval: 1.10-5.66), had greater increases in their transplant knowledge ( P < .001), and were more likely to call to restart/begin transplant evaluation (38% vs 24%, P = .006). When analyses were stratified by race, black patients were more likely to take several steps toward transplant in comparison to whites. DISCUSSION:The Explore Transplant helps dialysis patients make informed decisions and increases their pursuit of transplant, particularly among black patients

Between-group minimally important change versus individual treatment responders.

PurposeEstimates of the minimally important change (MIC) can be used to evaluate whether group-level differences are large enough to be important. But responders to treatment have been based upon group-level MIC thresholds, resulting in inaccurate classification of change over time. This article reviews options and provides suggestions about individual-level statistics to assess whether individuals have improved, stayed the same, or declined.MethodsReview of MIC estimation and an example of misapplication of MIC group-level estimates to assess individual change. Secondary data analysis to show how perceptions about meaningful change can be used along with significance of individual change.ResultsMIC thresholds yield over-optimistic conclusions about responders to treatment because they classify those who have not changed as responders.ConclusionsFuture studies need to evaluate the significance of individual change using appropriate individual-level statistics such as the reliable change index or the equivalent coefficient of repeatability. Supplementing individual statistical significance with retrospective assessments of change is desirable