Klinisch I - P11 - Donor comprehension of provided information during infor­med consent process in live donor nephrectomy; does it matter what we tell donors? A pilot study


K. Kortram, E.Q.W. Spoon, C.W.N. Looman, H.J.A.N. Kimenai, J.N.M Ijzermans, F.J.M.F. Dor

Chair(s): prof. dr. Jaap Homan van der Heide, nefroloog, AMC

Thursday 10 march 2016

13:30 - 14:00h at Foyer

Categories: Postersessie

Parallel session: Postersessies XI - Opgesplitst in 3 tijdblokken en 3 categoriëen (klinisch, basaal, donatie)


Background:
Safety and informed consent are even more important in live kidney donation than in other surgical procedures, since donors undergo a surgical procedure for the benefit of others. Current literature demonstrates great variations in informed consent practices. Donors report varying degrees of satisfaction with the information and preparation for live donor nephrectomy. Whether this is due to lack of education or comprehension remains unclear. It has been suggested that donors do not actually hear everything we tell them, but only use the information to confirm their decision, instead of weighing risks and benefits. It is still vital that these donors receive all necessary details.

Aim:
To assess the informed consent procedure in live donor nephrectomy, test donors on their comprehension of the provided information, and assess donor satisfaction with the informed consent procedure.

Methods: 
The preoperative surgical outpatient clinic visits of 46 potential living kidney donors were observed. Provided information was scored using standardized checklists, team members (N=9) received an “informer score” for each visit, one point was awarded for each mentioned item. Immediately after giving consent for donor nephrectomy, and again on the day of admission for donation, donors received a questionnaire testing their knowledge of the upcoming operation. Informers as well as donors could score a maximum of 20 points. Scores were compared between donors and informers. Outpatient scores were compared with admission scores. Demographic data and baseline donor characteristics were documented for correlation purposes.

Results:
Median informer score was 12 out of 20 points (range 2-20). Median donor score was 6 out of 20 (range 2-11). Donors scored best on duration of admission and convalescence, and worst on long-term complications. Risk of mortality was disclosed by 91% of informers, but only reproduced by 22% of donors at the outpatient clinic and 14% on admission. Donors living with children under 18, a higher educational level and registered (post-mortem) donors scored significantly better. Median donor satisfaction was 9 out of 10 (range 4-10).

Conclusion:
There were marked variations between the information provided by different informers, important complications were not always disclosed. Overall donor scores were low, although satisfaction was high. Whether donors are actually well enough informed at the time of giving consent merits further investigation.