Optimizing informed consent in living liver donors: Evaluation of a comprehension assessment tool

Gordon, Elisa J.; Mullee, Jack; Butt, Zeeshan; Kang, Joseph; Baker, Talia

doi:10.1002/lt.24175

Cited by 15 publications

(6 citation statements)

References 27 publications

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“…For instance, Gordon et al 17 developed and prospectively evaluated the initial psychometrics of a tool designed to evaluate living liver donor's comprehension. Our group recently published an instrument primarily designed to assess patients' comprehension for LVAD placement.…”

Section: Caregiver Understandingmentioning

confidence: 99%

Caregivers of Patients With Left Ventricular Assist Devices

Bruce

Minard

Wilhelms

et al. 2017

Circ: Cardiovascular Quality and Outcomes

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Support emphasize the importance of caregiver support for left ventricular assist device (LVAD) placement, recommending that a lack of support should serve as a relative contraindication to device placement.1 Despite the integral role that caregivers are expected to play, findings from studies on LVAD caregivers are limited. Most of these studies are qualitative, exclusively focus on caregivers' experiences or burdens, and fail to examine specific mechanisms of support and the impact of caregiver support on patient mortality or morbidity events. 2-9How caregivers contribute to positive or negative patient mortality or morbidity events is unclear. Without this foundational understanding, there will be variability across LVAD programs and among candidates with regard to how much emphasis to place on caregiver support, how such support should be assessed, and at what threshold an absence of support becomes Background-How caregivers contribute to positive or negative outcomes for left ventricular assist device (LVAD) patients remains unclear. Our primary study objectives were to (1) identify caregiver support attributes through a retrospective chart review of social workers' psychosocial assessments for LVAD patients and (2) determine how these attributes associated with patients' post-LVAD placement mortality and Interagency Registry for Mechanically Assisted Circulatory Support-defined morbidity events. Methods and Results-We retrospectively reviewed and recorded social workers' clinical assessments of adult patients implanted with durable continuous-flow LVADs as bridge to transplant, destination therapy, or bridge to decision from January 2010 to December 2014. Associations between caregiver characteristics and patient mortality and morbidity events were analyzed using Kaplan-Meier curves and Cox proportional hazards regression. Patient follow-up time was calculated as the time from hospital discharge until the earliest among death with LVAD, transplant, or the last day of the study (December 31, 2015). Patients were censored for death with LVAD at the time of transplant or the last day of the study. A total of 96 LVAD recipients were included in this study. Having a caregiver who understands the severity of the illness and options available to the patient (as determined and documented by the social worker; P=0.01), a caregiver who has identified a backup plan (P=0.02), and a caregiver who is able to provide logistical support (P=0.04) significantly mitigated risk of death. The risk of death for an LVAD patient was also significantly lower among those who have at least 1 adult child who lives within 50 miles (P=0.03) and those who have an extended family who can care for the patient (P=0.03). The risk of death was 3.1× more likely among patients who live alone compared with those who do not live alone (P=0.04). No caregiver characteristics were significantly associated with morbidity. Conclusions-This exploratory, hypothesis-generating study suggests that mortality after LVAD placement is impacted by caregiver u...

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Section: Caregiver Understandingmentioning

confidence: 99%

Caregivers of Patients With Left Ventricular Assist Devices

Bruce

Minard

Wilhelms

et al. 2017

Circ: Cardiovascular Quality and Outcomes

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“…Since the informed consent procedure varies widely, there is room for improvement. An educational tool that tests the donor's knowledge about the donation procedure and the postoperative period may be another key step in improving the informed consent process [43]. The transplant surgeon can then focus on those aspects for which the donor's knowledge is insufficient.…”

Section: Discussionmentioning

confidence: 99%

Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study

Spoon

Kortram

Ismail

et al. 2022

JCM

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Background: Informed consent for living kidney donation is paramount, as donors are healthy individuals undergoing surgery for the benefit of others. The informed consent process for living kidney donors is heterogenous, and the question concerns how well they are actually informed. Knowledge assessments, before and after donor education, can form the basis for a standardized informed consent procedure for live kidney donation. Methods: In this prospective, a multicenter national cohort study conducted in all eight kidney transplant centers in The Netherlands, we assessed the current status of the informed consent practice for live donor nephrectomy. All of the potential living kidney donors in the participating centers were invited to participate. They completed a pop quiz during their first outpatient appointment (Cohort A). Living kidney donors completed the same pop quiz upon admission for donor nephrectomy (Cohort B). Results: In total, 656 pop quizzes were completed (417 in Cohort A, and 239 in Cohort B). The average donor knowledge score was 7.0/25.0 (±3.9, range 0–18) in Cohort A, and 10.5/25.0 (±2.8, range 0–17.5) in Cohort B. Cohort B scored significantly higher on overall knowledge, preparedness, and the individual item scores (p < 0.0001), except for the long-term complications (p = 0.91). Conclusions: Donor knowledge generally improves during the live donor workup, but it is still quite disappointing. Long-term complications, especially, deserve more attention during living kidney donor education.

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“…by asking the donor to ‘teach back’ [ 23 ]. Gordon et al evaluated a comprehension assessment tool in living liver donors with 49 questions intended to test the comprehension of important aspects of informed consent [ 24 ]. As a supplement to a signed informed consent form, some type of testing of information transfer could be useful as documentation of the donor education process.…”

Section: Discussionmentioning

confidence: 99%

Long-term risks after kidney donation: how do we inform potential donors? A survey from DESCARTES and EKITA transplantation working groups

Mjøen

Maggiore

Kessaris

et al. 2021

Nephrology Dialysis Transplantation

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Background Publications from the last decade have increased knowledge regarding long-term risks after kidney donation. We wanted to perform a survey to assess how transplant professionals in Europe inform potential kidney donors regarding long-term risks. The objectives of the survey were to determine how they inform donors, to what extent, and to evaluate the degree of variation. Methods All transplant professionals involved in the evaluation process were considered eligible, regardless of the type of profession. The survey was dispatched as a link to a web-based survey. The subjects included questions on demographics, the information policy of the respondent and the use of risk calculators, including the difference of relative and absolute risks, and how the respondents themselves understood these risks. Results The main finding was a large variation in how often different long-term risks were discussed with the potential donors, i.e. from always to never. Eighty percent of respondents stated that they always discuss the risk of end stage renal disease, while fifty-six percent of respondents stated that they always discuss the risk of preeclampsia. Twenty percent of respondents answered correctly regarding the relationship between absolute and relative risks for rare outcomes. Conclusions The use of written information and checklists should be encouraged. This may improve standardization regarding the information provided to potential living kidney donors in Europe. There is a need for information and education among European transplant professionals regarding long-term risks after kidney donation and how to interpret and present these risks.

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Optimizing informed consent in living liver donors: Evaluation of a comprehension assessment tool

Cited by 15 publications

References 27 publications

Caregivers of Patients With Left Ventricular Assist Devices

Caregivers of Patients With Left Ventricular Assist Devices

Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study

Long-term risks after kidney donation: how do we inform potential donors? A survey from DESCARTES and EKITA transplantation working groups

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