Elisa J. Gordon

Validation of a Decision Regret Scale

Background. As patients become more involved in health care decisions, there may be greater opportunity for decision regret. The authors could not find a validated, reliable tool for measuring regret after health care decisions. Methods. A5- item scale was administered to 4 patient groups making different health care decisions. Convergent validity was deter- mined by examining the scales correlation with satisfaction measures, decisional conflict, and health outcome measures. Results. The scale showed good internal consistency (Cronbachs = 0.81 to 0.92). It correlated strongly with decision satisfaction (r = -0.40 to -0.60), decisional conflict (r = 0.31 to 0.52), and overall rated quality of life (r = -0.25 to - 0.27). Groups differing on feelings about a decision also differed on rated regret: F(2, 190) = 31.1, P < 0.001. Regret was greater among those who changed their decisions than those who did not, t(175) = 16.11, P < 0.001. Conclusions. The scale is a useful indicator of health care decision regret at a given point in time.

Consensus conference on best practices in live kidney donation: Recommendations to optimize education, access, and care

Live donor kidney transplantation is the best treatment option for most patients with late‐stage chronic kidney disease; however, the rate of living kidney donation has declined in the United States. A consensus conference was held June 5–6, 2014 to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. Transplant professionals, patients, and other key stakeholders discussed processes for educating transplant candidates and potential living donors about living kidney donation; efficiencies in the living donor evaluation process; disparities in living donation; and financial and systemic barriers to living donation. We summarize the consensus recommendations for best practices in these educational and clinical domains, future research priorities, and possible public policy initiatives to remove barriers to living kidney donation.

Disparities in kidney transplant outcomes: a review.

Sociocultural and socioeconomic disparities in graft survival, graft function, and patient survival in adult kidney transplant recipients are reviewed. Studies consistently document worse outcomes for black patients, patients with low income, and patients with less education, whereas better outcomes are reported in Hispanic and Asian kidney transplant recipients. However, the distinct roles of racial/ethnic versus socioeconomic factors remain unclear. Attention to potential pathways contributing to disparities has been limited to immunologic and nonimmunologic factors, for which the mechanisms have yet to be fully illuminated. Interventions to reduce disparities have focused on modifying immunosuppressant regimens. Modifying access to care and health care funding policies for immunosuppressive medication coverage also are discussed. The implementation of culturally sensitive approaches to the care of transplant candidates and recipients is promising. Future research is needed to examine the mechanisms contributing to disparities in graft survival and ultimately to intervene effectively.

Health Literacy and Kidney Disease: Toward a New Line of Research

Health literacy has been recognized as an important public health issue over the past decade. Low health literacy is a widespread problem in the general population, affecting over 90 million Americans. A growing body of research has demonstrated the association between low health literacy and worse health outcomes in a variety of chronic conditions. Despite the increasing prevalence of chronic kidney disease (CKD) and the considerable interest in health literacy, there has been limited research examining the role of health literacy in individuals at all stages of CKD. This article examines the role of health literacy in kidney disease by reviewing early research on the topic, providing a conceptual model of the relationship between health literacy and health outcomes, and highlighting potential areas for future research on health literacy in CKD.

Informed Consent for Living Donation: A Review of Key Empirical Studies, Ethical Challenges and Future Research

Given the organ scarcity, live organ donation is increasingly considered a viable alternative for kidney and liver transplantation. Yet living donation challenges the ethical principle of nonmaleficence by subjecting healthy individuals to medical, psychosocial and unknown risks. Therefore, transplant providers, policy‐makers and donors are committed to ensuring that prospective donors provide adequate informed consent to undergo the procedure. Informed consent for living donation is ethically required as a means of demonstrating respect for donors autonomy and protecting their safety. However, all elements of informed consent are fraught with difficulties due to the unique nature of the donation process and outcome. This paper reviews empirical research on informed consent for live kidney donors (LKD) and live liver donors (LLD) for both adult and pediatric recipients. As this review shows, studies that empirically assessed the quality of informed consent elements reveal considerable variability and deficiencies across the informed consent process, suggesting the need for improvement. This review highlights challenges to each element of consent for both LKDs and LLDs, and situates trends within broader policy contexts, ethical debates and avenues for future innovative research.

Medication‐taking among adult renal transplant recipients: barriers and strategies

Medication adherence is essential for the survival of kidney grafts, however, the complexity of the medication‐taking regimen makes adherence difficult. Little is known about barriers to medication‐taking and strategies to foster medication‐taking. This cross‐sectional study involved semi‐structured interviews with 82 kidney transplant recipients approximately 2 months post‐transplant on medication‐related adherence, barriers to medication‐taking, and strategies to foster medication‐taking. Although self‐reported adherence was high (88%), qualitative analysis revealed that half of the patients (49%) reported experiencing at least one barrier to medication‐taking. The most common barriers were: not remembering to refill prescriptions (13%), changes to medication prescriptions or dosages (13%), being busy (10%), forgetting to bring medicines with them (10%), and being away from home (10%). The most common strategies to foster medication‐taking were: maintaining a schedule of medication‐taking (60%), organizing pills using pillboxes, baggies, cups (42%), bringing medicines with them (34%), organizing pills according to routine times (32%), and relying on other people to remind them (26%). Understanding the range of barriers to adherence and strategies kidney recipients devised to promote medication‐taking may help transplant clinicians to better educate transplant recipients about appropriate medication‐taking, mitigate the risk of medication nonadherence‐related rejection, and may help inform patient‐centered interventions to improve medication adherence.

Transplant Center Provision of Education and Culturally and Linguistically Competent Care: A National Study

Although transplant centers are required to educate patients about kidney transplantation (KT) and living donation (LD), little is known about the educational format, and cultural and linguistic competence necessary for patients to make informed treatment decisions. This study surveyed US transplant administrators about education provided concerning KT and LD and culturally and linguistically competent care. Transplant administrators were invited to participate in an anonymous Internet‐based survey about education format, education providers, promoting LD, culturally and linguistically competent care and center characteristics. Most (61%) transplant administrators contacted (N = 280/461) completed the survey. Most administrators (91%) reported that their center provides any type of formal education in their pre‐KT evaluation. Education was mostly provided by: nurses (97%), social workers (72%) and surgeons (55%), and predominantly as one‐on‐one (80%) versus group discussions (60%). Education was primarily delivered through written materials (93%). Written educational materials in Spanish (86%) and the provision of interpreters (82%) were emphasized over educational sessions in Spanish (39%), or employing bilingual (51%) and bicultural staff (39%). Half (55%) promoted LD as the best option. Transplant centers need to take greater efforts to consistently provide appropriate education, promote LD, and provide culturally and linguistically competent care to ensure effective communication with all patients.

The financial impact of immunosuppressant expenses on new kidney transplant recipients

Abstract: Background:  This study aimed to examine kidney transplant recipients’ ability to afford transplant‐related out‐of‐pocket expenses and the financial impact of these expenses on their lives.

Relationship between Health Literacy and Kidney Function

Low health literacy (HL) may contribute to poor self‐management of chronic kidney disease (CKD) and poor kidney function. This study aimed to assess the relationship between HL and estimated glomerular filtration rate (eGFR).

Surgeons' Perceptions of Public Reporting of Hospital and Individual Surgeon Quality

Background:Hospital-specific and surgeon-specific public reporting of performance measures is expanding largely due to calls for transparency from the public and oversight agencies. Surgeons continue to voice concerns regarding public reporting. Surgeons’ perceptions of hospital-level and individual-level public reporting have not been assessed. This study (1) evaluated surgeons’ perceptions of public reporting of surgical quality; and (2) identified specific barriers to surgeons’ acceptance of public reporting. Methods:All surgeons (n=185) at 4 hospitals (university, children’s, 2 community hospitals), representing all surgical specialties, received a 41-item anonymous Internet-based survey. Twenty follow-up qualitative interviews were conducted to assess surgeons’ interpretation of findings. Results:The survey response rate was 66% (n=122). Most surgeons supported public reporting of quality metrics at the hospital level (80%), but opposed individual reporting (53%, P<0.01). Fewer surgeons expected that individual (26%) or hospital (47%) public reporting would improve outcomes (P<0.01). Few indicated that their practice would change with hospital (11%) or individual (18%) public reporting (P=0.20). Primary concerns regarding public reporting at the hospital level included patients misinterpreting data, surgeons refusing high-risk patients, and outcome metric validity. Individual-surgeon level concerns included outcome metric validity, adequate sample sizes, and patients misinterpreting data. To make public reporting more acceptable, surgeons recommended patient education, simplified data presentation, continued risk-adjustment refinement, and internal review before public reporting. Conclusions:Surgeons expressed concerns about public reporting of quality metrics, particularly reporting of individual surgeon performance. These concerns must be addressed to gain surgeons’ acceptance and to use public reporting to improve health care quality.