Prospective pilot study of living kidney donor decision-making and outcomes The pool of potential living kidney donors has greatly increased with the introduction of donor protocols that include incompatible donors through the use of plasmapheresis (1, 2) and exchange donor and non-directed donor protocols. To promote fully informed consent, the Institute of Medicine (3) and several transplant organizations including the American Society of Transplant Surgeons, The Division of Transplantation of the Health Resources and Services Administration, and the National Institutes of Health, have recom- mended that transplant centers collect data on the medical and psychological outcomes of living donors that can be provided to future individuals considering living donation (4). Earlier studies have examined cognitive factors (5) and motivational factors involved in the decis- ion to donate and the effect of living kidney donation on the family (6). However, we found no studies that have prospectively explored the extent to which the decision to donate is shared with family members. Also, while previous investigators have asked donors whether they would still donate if they could decide again, few have requested donor input on how to improve donor education and care during the recovery period. The intro- duction of new protocols that increase the number of potential donors and allow donation by those with varying types of relationships with the recipi- ent offer an important opportunity to explore how Walton-Moss B, Boulware LE, Cooper M, Taylor L, Dane K, Nolan MT. Prospective pilot study of living kidney donor decision-making and outcomes. Clin Transplant 2007: 21: 86–93. ª Blackwell Munksgaard, 2006 Abstract: In its recent report on organ donation, the Institute of Medicine has recommended rigorous studies of how living organ donors make the decision to donate. In this pilot study, 65 donor applicants were interviewed while being evaluated in the outpatient donor clinic and 20 were surveyed again three months after donation. Fifteen and six of these subjects were surveyed again in six and 12 months respectively. Several strategies for retaining donors in a prospective longitudinal study are discussed. Half of the donors indicated that the decision to donate was a shared family decision. Married donors were slightly more likely than non-married donors to involve another family member in this decision. Several donors made practical recommendations for improved education of donors during what many perceived to be a very lengthy evaluation process. Some subjects recommended more discussion about post-operative pain and the expected pace of recovery after discharge. Others spoke of the challenge of comple- ting basic homemaking tasks when the donor and recipient were in the same nuclear family. We are continuing to explore these and other aspects of donor decision-making and outcomes and have expanded our sample to include non-donors in the post-evaluation period. Benita Walton-Moss a , L. Ebony Boulware b , Matthew Cooper c , Laura Taylor a,d , Kathryn Dane e and Marie T. Nolan a a School of Nursing, Johns Hopkins University, b Welch Center for Prevention, Epidemiology, and Clinical Research and Department of Medicine, School of Medicine and Bloomberg School of Public Health, Johns Hopkins University, c Division of Transplantation, Department of Surgery, The University of Maryland School of Medicine, d The Catholic University of America, School of Nursing and e Department of Surgical Nursing, The Johns Hopkins Hospital, Baltimore, MD, USA Key words: decision-making – ethics – organ procurement Corresponding author: Benita Walton-Moss DNS, APRN, BC, School of Nursing, Johns Hopkins University, 525 North Wolfe Street, Baltimore, MD 21205, USA. Tel.: 410-955-1290; fax: 410-502-5481; e-mail: bmoss@son.jhmi.edu Accepted for publication 2 August 2006 Clin Transplant 2007: 21: 86–93 DOI: 10.1111/j.1399-0012.2006.00588.x Copyright ª Blackwell Munksgaard 2006 86