School of
Nursing faculty member Marie Nolan will lead a team of
Johns Hopkins investigators in a $2.1 million study to
determine how potential kidney donors make their donation
decision and how kidney donors recover after the surgery.
The four-year study, funded by the National Institute
of Nursing Research, will survey 189 live kidney donor
candidates during their initial donor evaluation and at
three, six and 12 months after surgery to examine how they
perceive the donation experience and recovery period. Those
who eventually choose not to donate also will be surveyed
during the initial evaluation and three months later.
Nolan, who is an associate professor and director of
the Doctor of Nursing Science program, will direct the
multidisciplinary JHU research team that includes Anne
Belcher, senior associate dean, and Linda Rose, associate
professor, School of Nursing; Matthew Cooper, assistant
professor of surgery and director of the Kidney Transplant
Program, School of Medicine; L. Ebony Boulware, assistant
professor of internal medicine, School of Medicine; Richard
Thompson, assistant scientist, Department of Biostatistics,
Bloomberg School of Public Health; and nurses Kathryn Dane
and Barbara West, Department of Surgery at The Johns
Hopkins Hospital.
Although living donation is rapidly increasing, with
more than 52,000 persons currently awaiting kidney
transplantation and 20 percent more added to the list each
year, very little is understood about how individuals
decide whether to donate, and how they perceive the
donation experience itself. The U.S. Department of Health
and Human Services Advisory Committee on Transplantation
now is stressing the need to study living donor decision
making and outcomes.
"Previous studies have simply asked donors whether
they would still choose to donate if they could make their
choice all over again," Nolan said. "But just because a
donor would do it again does not mean that the donor was
satisfied with all aspects of pre-donation education or
post-donation care.
"We want to talk to people who do and do not choose to
donate," she said. "What is the process like that leads
individuals to their different decisions? What are the
differences in their experiences?"
Nolan noted, for example, that cultural background may
play an important role. "African-Americans comprise 12
percent of the U.S. population and over 30 percent of those
with end stage renal disease," Nolan said. "However, they
are less likely to be living donors than whites, and only
15 percent of living organ recipients are African-American.
In studying how individuals decide whether to donate, we
hope to better understand these disparities."
The family's role in helping an individual make the
decision may also be important. Most transplant centers in
the United States emphasize autonomous decision making.
Assuming that the donor may feel pressure from family
members to donate, they may isolate the individual from his
or her family during the decision-making process. But Nolan
has found that some donors actually prefer sharing the
decision making with their families. "If we can better
understand the process," she said, "we can tailor donor
education to give those considering donation more of the
information that matters to them."
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