We have developed several questionnaires and instruments designed to improve our assessment of key outcomes that are important to transplant patients and living donors. These instruments are available upon request (firstname.lastname@example.org).
Living Donation Expectancies Questionnaire
The Living Donation Expectancies Questionnaire (LDEQ) was designed initially to measure potential donors’ expectations during the evaluation process. Our goal was to provide clinicians and researchers with a standardized format in which the motivations and expectations of potential living donors could be assessed. The LDEQ has 42 expectancy statements with 5-point Likert scales (0=strongly disagree, 1=disagree, 2=neutral, 3=agree, 4=strongly agree). There are six subscales – Personal Growth (13 items), Interpersonal Benefit (7 items), Spiritual Benefit (6 items), Quid Pro Quo (5 items), Health Consequences (6 items), and Miscellaneous Consequences (5 items). A comparable post-donation version has also been developed to measure whether these expectations were met following living donation. The pre- and post-donation LDEQ versions are identical expect for verb tense (e.g., Pre: “As an organ donor, I expect my priorities about what is important will change.” Post: “As an organ donor, my priorities about what is important have changed.”).
Rodrigue JR, Paek M, Whiting J, Vella J, Garrison K, Pavlakis M, Mandelbrot DA. Trajectories of perceived benefits in living kidney donors: Association with donor characteristics and recipient outcomes. Transplantation. 2014; 97: 762-8.
Rodrigue JR, Guenther R, Kaplan B, Mandelbrot DA, Pavlakis M, Howard RJ. Measuring the expectations of kidney donors: Initial psychometric properties of the Living Donation Expectancies Questionnaire. Transplantation 2008; 85:1230-4.
Rodrigue JR, Widows MR, Guenther R, Newman RC, Kaplan B, Howard RJ. The expectancies of living kidney donors: Do they differ as a function of relational status and gender? Nephrol Dial Transplant 2006; 21:1682-8.
Fear of Kidney Failure
Some living kidney donors may harbor anxiety about having only one remaining kidney. Thus, we developed a brief instrument to assess anxiety or fear of future kidney failure in this population. We used an iterative process to produce a 5-item questionnaire, with the following response options – “Not at all fearful” (1), “Somewhat fearful” (2), “Moderately fearful” (3), “Very fearful” (4), and “Extremely fearful” (5). Higher scores indicate more fear or anxiety about future kidney-related health. In addition to our work in the US, this measure is also being validated in a living donor population in Spain.
Rodrigue JR, Fleishman A, Vishnevsky T, Whiting J, Vella J, Garrison K, Moore D, Kayler L, Baliga P, Chavin K, Karp S, Mandelbrot DA. Development and validation of a questionnaire to assess fear of kidney failure following living donation. Transpl Int. 2014; 27:570-5.
Rodrigue J.R.; Schold, J.D.; Morrissey, P.; Whiting, J.; Vella, J.; Kayler, L.K.; Katz, D.; Jones, J.; Kaplan, B.; Fleishman, A.; Pavlakis, M.; Mandelbrot, D.A.; KDOC Study Group. Mood, body image, fear of kidney failure, life satisfaction, and decisional stability following living kidney donation: Findings from the KDOC study. Am J Transplant. June 18, 2018.
Kidney Exchange Concerns
Some incompatible living donors and recipients decide not to participate in kidney exchanges, although their reasons for this decision are largely unknown. We developed a tool to assess concerns about kidney exchanges in both potential living donors and their intended recipients – the Kidney Exchange Concerns–Donors (KEC-D) and the Kidney Exchange Concerns–Recipients (KEC-R) questionnaires. To generate items for the KEC-D and KEC-R questionnaires, we reviewed qualitative and quantitative publications in which KPE experiences at the individual LD/recipient or programmatic level were described. Additionally, we asked professionals experienced in KPE (4 nephrologists, 2 surgeons, 5 LD/transplant nurse coordinators, 2 social workers, 1 psychologist, and 1 KPE program director) to identify any KPE concerns reflected in their interactions with incompatible LDs and/or intended recipients. We then generated concern statements for the KEC-D and KEC-R, respectively, with the following response options: strongly disagree (1), disagree (2), agree (3), and strongly agree (4). Our expert panel reviewed each questionnaire for clarity, readability, and redundancy, which led to several items being reworded or removed. Higher scores indicate more KPE concern. The final KEC-D and KEC-R questionnaires comprised 22 and 23 concern statements, respectively. For both measures, statements are conceptually grouped into three subscales: Distrust/Inequity, Uncertainty/Worry, and Inconvenience/Cost.
Rodrigue JR, Leishman R, Vishnevsky T, Evenson AR, Mandelbrot DA. Concerns of ABO incompatible and crossmatch-positive potential donors and recipients about participating in kidney exchanges. Clin Transplant. 2015; 29:233-41.
Alcohol Relapse Risk Assessment
We developed a clinical tool to guide the alcohol relapse risk assessment during the pre-transplant period to identify adult liver transplant candidates at heightened risk of post-transplant relapse. Based on a review of the liver transplant and general addictions literatures, consultation with substance abuse researchers and treatment specialists, and our own clinical experiences, we developed a list of 25 dichotomized variables hypothesized to be associated with risk of alcohol relapse following liver transplantation. A clinical score (i.e., Alcohol Relapse Risk Assessment, or ARRA, score) was constructed based on a final logistic regression model. One point was assigned for the presence of each predictor, or risk factor. Patients can be assigned to 4 ARRA risk categories based on the total score: minimal, low, moderate, and high risk of relapse to any alcohol use post-transplant.
In addition to the questionnaires noted above, we have developed several other measures to assess:
- Knowledge of living donation
- Concerns about pursuing living donation
- Self-efficacy to pursue live donor kidney transplantation
- Readiness for live donor kidney transplantation
- Expectations about transplantation
More details about these measures can be provided upon request.