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“Patient Navigators in
Community-Based Nephrology Practices” (Marlow et al,
2016)19
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The patient navigator intervention is predicated on
the assumption that early contact with transplant candidates
allows for early education about transplantation and a
higher potential for LDKT, particularly preemptive
transplants. The overarching goal of the program is to help
patients progress through the referral, evaluation, and
transplantation process. Social workers seek to establish relationships with
potential transplant candidates, provide support and
individualized transplant and living donation information to
patients and family members, and address barriers to
possible LDKT and living donation.
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“Living Donor Family
Education” (Schweitzer et al, 1997 & 2000; Foster et
al, 2002)20–22
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In addition to a didactic presentation and
discussion led by one of several program nurse coordinators,
an 8 to 10-minute video incorporates information on the
surgical procedure and risks, as well as perspectives and
comment from donors on the pre-operative testing
experience. The video seeks to give perspectives from donors
demographically similar to the population served by the
transplant center (predominantly African American and
older). Overall, the program seeks to address problems in
the transplant center’s past educational efforts,
including: 1) limited and inconsistent provision of
information on living donation to transplant candidate
families; 2) lack of integration of education into the
program’s evaluation and care process.
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“Seminars on
Saturdays” (Brown et al, 2011)23
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This program represents a revision of an existing
program offered by a single transplant center, based on
attendee feedback and analysis of logistical barriers felt
to have limited previous participation in education
programs. The program is conducted by a multidisciplinary
team including surgeons, other physicians, and nursing staff
including transplant coordinators, clinical nurses,
pre-dialysis nurse specialists, dialysis staff, counselors,
and 10–12 kidney recipients and donors (per
seminar). The inclusion of testimonials from laypersons, who
varied in age/gender/ethnicity and type relationship to the
patient, is viewed as a critical component of the
program. The program is offered every 2 months (6 times per
year) on a Saturday to all pre-dialysis patients and their
family/friends, as well as to all patients on the kidney
waitlist, and to all dialysis patients not yet waitlisted
but deemed suitable for transplant by their care
providers. The program seeks to address the following
problems: 1) lack of access to information and
misconceptions about living donation, both of which
identified as principal barriers to pursuit of LDKT by
patients; 2) a need to improve the quality and delivery of
information.
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“Live Donor Champion”
(LDC) (Garonzik-Wang et al, 2012)24
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The LDC program focuses on removing three specific
barriers to LDKT: 1) discomfort discussing such a sensitive
subject; 2) fear of asking someone else for an organ, and 3)
limited knowledge about the live donation process. The role of the LDC is to improve comfort in
initiating conversations and spreading awareness about the
patient’s kidney failure and about live
donation. Anyone over age 18 who speaks English is eligible
to serve as a LDC; the LDC is usually a spouse, significant
other, family member, or friend of the patient. The program comprises 6 meetings held once monthly.
Each 2-hour meeting focuses on a different topic. Topics
include introduction to kidney transplantation and living
donation, how to initiate a conversation with potential
living donor candidates, identifying a social network, and
sharing success stories with a living donor and recipient
panel. The LDC is encouraged to use the information and
skills learned at each session to begin looking for
potential donors. Participants are asked to keep a monthly
log of their progress and are also encouraged to record what
worked well and what did not to provide feedback to program
coordinators.
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“Hispanic Transplant
Education” (Gordon et al, 2014)25
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The program sought to address some of the
underlying reasons for disparities in LDKT rates in
Hispanics. The first session includes both patients and family
members (or friends) in which a Hispanic transplant surgeon
presents information about transplantation, donation risks
and benefits, and alternatives. The second session includes only family members and
is focused on cultural concerns and misconceptions.
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“Educational Intervention
Based in Peer Experiences” (Delair et al,
2010)26
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Exposure to the experience of living liver donors
is not usually included in transplant candidate education;
the investigators hypothesized that it could help transplant
patients to improve their knowledge about living donation
and to feel more comfortable discussing donation with
others. In the materials, the former living liver donors
discuss their experiences, including views about the
surgery, recovery, costs, employment, and life after
donation. The materials also include direct quotes from
donors concerning what information they would give to
individuals considering living liver donation. Although the intervention is designed to be
delivered to the transplant candidate in the transplant
clinic, it can be mailed to patients. Patients are encouraged to share the materials with
potential living donors in their social network.
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“Pre-Dialysis
Education” (PDEP) (Cankaya et al, 2013)27
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An implicit hypothesis was that PDEP would have an
impact on preemptive LDKT. The modules address general considerations and
treatment recommendations for all patients regardless of
level of kidney disease; and peritoneal dialysis,
hemodialysis and kidney transplantation. The problems that the PDEP was designed to address
included the need to 1) inform and educate patients about
their disease and treatment options before dialysis, and 2)
reduce treatment complications, increase treatment
compliance, and start treatment in a planned way to avoid
emergencies.
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“Living Donation
Education” (LED) (Cervera et al, 2015)28
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The intervention is delivered in two phases at the
transplant center. In Phase I, patients and family members attend a
formal education session in which a healthcare provider
progresses through an audiovisual presentation on
alternative ESRD treatments, the benefits of LDKT, living
and deceased donation, specific information focused on
living donation (eligibility criteria, surgery, risks,
outcomes), the concept of a ‘live donor
champion’, and strategies to identify potential
living donors. All participants receive a booklet mirroring
information presented during the session. In Phase II, patients and family members are
invited to meet with a living donor and recipient pair who
share their experiences and answer questions. Both educational sessions and the booklet are
provided in English or Spanish, based on patient
preference.
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Social Media/ Facebook Apps (Kumar et
al, 2016)29
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Grounded in prior literature, clinical judgement,
ethicist oversight and feedback from patient focus groups,
the smartphone app provides step-by-step instructions for
creating a Facebook post detailing an individual’s
struggle with organ failure and their need for a living
donor. Links to sources of vetted information on the
risks, benefits and processes of live donation are also
included.
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“My Transplant Coach”
Decision Aid (Axelrod et al, 2017)30
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Developed by educational professionals, medical
professionals, statisticians and patient representatives
with feedback from focus groups, the app provides
patient-centric information about kidney transplantation to
improve overall transplant knowledge and allow candidates to
consider the relative benefits of LDKT and various types of
DDKT options. Incorporates data based on waitlist mortality,
geographic variation in organ supply and survival
calculators. Presents data to candidates using animated
presentation and simple graphics
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