Education Priorities and What Matters to Those Considering Living Kidney Donation

2020 ◽  
pp. 152692482097859
Author(s):  
Kara Schick-Makaroff ◽  
Rebecca E. Hays ◽  
Julia Hunt ◽  
Laura A Taylor ◽  
Dianne LaPointe Rudow

Introduction: Although informed consent content elements are prescribed in detailed regulatory guidance, many live kidney donors describe feeling underprepared and under informed. The goal of this pilot study was to explore the educational components needed to support an informed decision-making process for living kidney donors. Methods/Approach: A qualitative description design was conducted with thematic analysis of 5 focus groups with 2 cohorts: living kidney donor candidates (n = 11) and living kidney donors (n = 8). Findings: The educational components needed to engage in an informed decision-making process were: 1) contingent upon, and motivated by, personal circumstances; 2) supported through explanation of risks and benefits; 3) enhanced by understanding the overall donation experience; and 4) personalized by talking to another donor. Discussion: Tailoring education to meet the needs for fully informed decision-making is essential. Current education requirements, as defined by regulatory bodies, remain challenging to transplant teams attempting to ensure fully informed consent of living kidney donor candidates. Information on the emotional, financial, and overall life impact is needed, along with acknowledgement of relational ties driving donor motivations and the hoped-for recipient outcomes. Discussion of care practices, and access to peer mentoring may further strengthen the informed decision-making process

2020 ◽  
Vol 35 (Supplement_3) ◽  
Author(s):  
Chee Keong Thye ◽  
Yee Wan Lee ◽  
Maisarah Jalalonmuhali ◽  
Soo Kun Lim ◽  
Kok Peng Ng

Abstract Background and Aims All living kidney donors undergo assessment of renal function by evaluation of Glomerular Filtration Rate (GFR). 51Cr-EDTA is one of the most widely used marker for measuring GFR but it is hampered by cost and laboriousness as well as not being widely available in Malaysia. Measuring 24-hour urine for creatinine clearance (Ccr) is a common alternative when exogenous filtration markers are not available. Ccr suffers from over/underestimation of measured GFR (mGFR) due to errors in urine collection and tubular secretion of creatinine. This is a study to compare the correlation of Ccr against 51Cr-EDTA in measuring GFR among the living donors in Malaysian population. Method This is a cross-sectional, single-centre study of a cohort of living kidney donor candidates from January 2007 to March 2019. All candidates who had mGFR done with both 51Cr-EDTA and Ccr in University Malaya Medical Centre were enrolled. Special consideration was taken to account for adequate urine sampling for Ccr. Clinical data was analysed for correlation, bias, precision and accuracy between Ccr and 51Cr-EDTA. Results A total of 83 living kidney donors with a mean age of 45.60 ± 11.06 years and body mass index (BMI) of 24.36 ± 4.03 were enrolled. Female comprised 74.7% of the donors while Chinese, Malay and Indian accounted for 67.5%, 20.5% and 7.2% of the donors respectively. The study group had a mean serum creatinine of 63.37 ± 16.00 umol/L with a urine volume of 2.03 ± 0.81 L (range 0.70 – 3.82). mGFR from 51Cr-EDTA was 125.56 ± 27.64 ml/min/1.73m2 (range 77.0 – 194.3) whereas calculated Ccr was 136.05 ± 36.15 ml/min/1.73m2 (range 75.32 – 280.06). The correlation coefficient between Ccr and 51Cr-EDTA is moderate (r = 0.43) (p < 0.01). Mean absolute bias between Ccr and 51Cr-EDTA was 10.59 ± 37.99 ml/min/1.73m2 (p < 0.05). The accuracy of Ccr within 30% of 51Cr-EDTA was 77.11%. Conclusion Our study showed that Ccr significantly overestimates mGFR compared to 51Cr-EDTA. However, there is a significantly moderate positive correlation between Ccr and 51Cr-EDTA. Thus, in the absence of 51Cr-EDTA, Ccr is a clinically acceptable alternative if utilized with care and understanding its limitations.


2018 ◽  
Vol 29 (1) ◽  
pp. 78-83 ◽  
Author(s):  
Howard Trachtman ◽  
Brendan Parent ◽  
Ari Kirshenbaum ◽  
Arthur Caplan

Background: Compared to dialysis, living kidney donation has a greater chance of restoring health and is associated with better outcomes than deceased kidney donation. Although physicians advocate for this treatment, it is uncertain how they would act as potential living kidney donors or recipients. Methods: We surveyed 104 physicians, pediatric, and internal medicine nephrologists, to ascertain their attitudes toward living donation. Results: Among surveyed nephrologists, there was nearly universal support for living kidney donation as a viable medical option, and nearly all of them would support a healthy and medically cleared patient who wishes to participate. Although support was still strong, nephrologists were significantly less likely to support their friends and relatives participating in living kidney donation, and their support declined further for friends and relatives donating to nonrelatives. Conclusion: Our findings suggest the need to more deeply examine physician-perceived risks involved in serving as a living kidney donor. Based on differences in surveyed nephrologist attitudes regarding donation to and from loved ones versus nonrelatives, we suggest that physicians should give careful consideration to how they describe the risks of living donation to potential donors.


2014 ◽  
Vol 42 (3) ◽  
pp. 334-343 ◽  
Author(s):  
Richard Robeson ◽  
Nancy M. P. King

The principle of informed consent is so firmly established in bioethics and biomedicine that the term was soon bowdlerized in common practice, such that engaging in the informed decision-making process with patients or research subjects is now often called “consenting” them. This evolution, from the original concept to the rather questionable coinage that makes consent a verb, reveals not only a loss of rhetorical precision but also a fundamental shift in the potential meaning, value, and implementation of the informed consent process. Too often, the sharing of information has been replaced by the mere acquisition of agreement with the authority ostensibly offering a choice.Scholars of informed consent agree that its salience and its legitimacy derive from a fiduciary duty to inform, in order to respect, protect, and promote autonomous decision making by those to whom the duty is owed.


2004 ◽  
Vol 94 (2) ◽  
pp. 198-205
Author(s):  
Jay M. Baruch

Contrary to popular belief, a patient’s signature on a piece of paper does not constitute informed consent. This article describes the ethical framework of consent in the context of the larger process of informed decision making. The elements of informed consent are examined in practical terms. Common pitfalls are addressed, with strategies to help anticipate and resolve possible dilemmas. These important tools are integral to all levels of medical decision making, including those at the end of life. (J Am Podiatr Med Assoc 94(2): 198-205, 2004)


2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 289-289
Author(s):  
Kim Tran ◽  
Rami Rahal ◽  
Carolyn Sandoval ◽  
Geoff Porter ◽  
Sharon Fung ◽  
...  

289 Background: Because treatment options for localized prostate cancer (PCa) have similar survival outcomes but varying side effects, it is important that patients are meaningfully involved in the decision-making process to ensure the chosen treatment aligns with their needs, wants and preferences. Here, we describe PCa patients’ experience with informed decision-making as well as treatment patterns and trends over time. Methods: Focus groups were conducted with 47 men treated for PCa across Canada to understand their cancer journey experience. Thematic analysis was conducted. A subset of this data on informed decision-making is described. Men (≥ 35 years) diagnosed with localized, low-risk PCa from 2011-2013 were identified using data from six provincial cancer registries. Treatment data were identified by linking hospital/cancer centre data with registry data. Descriptive statistics were generated to describe treatment patterns and trends. Results: Focus group participants expressed a desire to be involved in the treatment decision-making process. While many participants felt completely informed about the treatment choices available to them, others felt they had not been properly engaged in the treatment decision-making process. Some participants felt they had opted for surgery or radiation therapy (RT) without full knowledge of the trade-offs between potential benefits and side effects. Others felt they may have made different decisions about their care had they been more informed. From registry data, in 2013 surgery was the most common primary treatment for men with low-risk PCa ranging from 12.0% in New Brunswick to 41.7% in Nova Scotia. RT was the second most common ranging from 6.4% in New Brunswick to 18.3% in Saskatchewan. Varying majorities of men had no record of surgical or radiation treatment, a proxy for active surveillance. Treatment trends over time suggest an increase in the use of non-active treatment approaches from 60.7% in 2011 to 69.9% in 2013. Conclusions: System performance indicators yield useful information about oncology practice patterns and trends. This information is enhanced when combined with patient level information on how men felt about decision-making around their PCa care.


Author(s):  
Sherif Hassanien ◽  
Doug Langer ◽  
Mona Abdolrazaghi

Over the last three decades, safety-critical industries (e.g. Nuclear, Aviation) have witnessed an evolution from risk-based to risk-informed safety management approaches, in which quantitative risk assessment is only one component of the decision making process. While the oil and gas pipeline industry has recently made several advancements towards safety management processes, their safety performance may still be seen to fall below the expected level achieved by other safety-critical industries. The intent of this paper is to focus on the safety decision making process within pipeline integrity management systems. Pipeline integrity rules, routines, and procedures are commonly based on regulatory requirements, industry best practices, and engineering experience; where they form “programmed” decisions. Non-programmed safety and business decisions are unique and “usually” unstructured, where solutions are worked out as problems arise. Non-programmed decision making requires more activities towards defining decision alternatives and mutual adjustment by stakeholders in order to reach an optimal decision. Theoretically, operators are expected to be at a maturity level where programmed decisions are ready for most, if not all, of their operational problems. However, such expectations might only cover certain types of threats and integrity situations. Herein, a formal framework for non-programmed integrity decisions is introduced. Two common decision making frameworks; namely, risk-based and risk-informed are briefly discussed. In addition, the paper reviews the recent advances in nuclear industry in terms of decision making, introduces a combined technical and management decision making process called integrity risk-informed decision making (IRIDM), and presents a guideline for making integrity decisions.


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