'Kidney Team At Home'; Health education on kidney transplantation and the different transplantation options for kidney patients and their family and friends'

Living kidney donation offers an alternative for many patients with a cadaveric
kidney transplantation: in the Netherlands about half of all
kidney transplantations are performed with a living kidney donor. In Rotterdam,
even towards 72% (august 2010). Advantages of live transplantation include a
shorter waiting time, a planned operation and a better graft and patient
survival (Hariharan et al., 2000). However, patients of non-Dutch origin make
less use of living donation: 15% of patients transplanted using a kidney from a
living donor are of non-Dutch origin, while 44% of patients on the waiting list
for a cadaveric kidney are from non-Dutch origin. The reasons for this
difference between the Dutch and the non-Dutch are unclear and have in the
Netherlands so far not been investigated. It may be that the hospital
informational material is not sufficient enough or that communication about
living donation in the family and the community entails other aspects than with
Dutch patients. Previous research has actually shown that the jamming of the
communication about living donation can easily lead to not fulfilling a living
donation wish (Kranenburg et al., 2007).

The main objective of this research is to contribute to the elimination of
disparities in care between Dutch and non-Dutch kidney patients where living
donation is concerned. The primary objective is evaluating the effectiveness of
an intervention aimed at improving knowledge and commucation between patient
and relatives about living kidney donation. This is done by evaluating whether
our patients have reached a stage of informed decision-making, while taking
into account the stability of relationships and respect for the individual
autonomy and feelings. The secondary objective is evaluating whether the
inequality in health usage regarding living donation is elevated. This latter
is done by looking at the numbers of preformed living donations between the
Dutch and the non-Dutch patients.

This is a prospective randomized study. Patients will be divided into two
groups (a control group and an experimental group) after giving their consent
to participate. The experimental group will receive a home-based educational
program in addition to the regular care while the control group continues
receiving the regular care. We will ensure an equal distribution between the
control and experimental group regarding the Dutch and the non-Dutch. In total
80 participants will be included per year in the study (40 Dutch and 40
non-Dutch participants per group). During a previsit we will discuss the
invitational list (family and/or friends) with the patient.

Patients will receive the study information after their second consultation
with the nephrologist at the outpatient pretransplantation clinic. After this a
request for participation will be made to them. The intervention consists
primarily of two sessions at the patient's home. The first session
(familiarization session) will occur after patients have given their consent to
participate. This interview is held with the patient alone. During this first
session, a sociogram of the social environment will be constructed in order to
determine which family members and/or friends (invitees) may possibly attend
the the educational session. The second session (educational session) includes
a meeting at the patient's home. This time it is intended that the invitees are
present at the patient's home. In this session topics about kidney disease and
possible forms of treatment will be discussed. We will perform pre- (before the
familiarization session) and post (a couple days after the educational session)
measures regarding several relevant concepts (e.g. knowledge, attitudes, risk
perception, intentions, etc.).

Discuss a subject like living kidney donation can be difficult for patients and
their family and/or friends. Using elements of Multi System Therapy can be
helpful. Multi System Therapy (MST) is originally an evidence-based family
intervention, respecting the roles, interests and wishs of the members of the
family. In this therapy genuine communication, autonomy and self (patient
empowerment) are crucial rather than behavioral problems.
Kidney patients who end up in the intervention group, are hosts for the meeting
at their houses this too can be seen as a burden. We can, if desired, let the
meetings take place at another location. Because of this patient-centered
approach, patients do not have to allocate extra time and effort for the
intervention like visiting the hospital. No additional physical examinations
are performed. All this is done, to make the intervention as comfortable as
possible for the participants.