Patients are often critical of quality -of -life programs because
health -care professionals developed them with little consideration
for the individual's needs, Susan Randolph, RN, MSN, said at a
symposium on bone marrow transplantation for breast cancer, sponsored
by The Western Pennsylvania Hospital.
"Regardless of prognosis, as long as the patient is alive
she has a right to quality of life; a right to what she wants,"
she said. "It is the duty of all of us here to help her achieve
it," said Ms. Randolph, Bone Marrow Transplant Coordinator
for Caremark Inc.
Ms. Randolph advised health professionals to "ask the real
experts--the patients--what they need and how we can help. What
is their biggest obstacle? What is their greatest joy? Our most
effective intervention to ensure that quality-of-life and survivorship
issues are addressed is simply to listen to the patient."
In her role as home health-care provider for breast cancer transplant
patients, Ms. Randolph has found that quality-of-life perspectives
differ greatly, depending on such variables as marital and economic
status, cultural experience, and age. Not everyone fits snugly
into one preconceived plan, she said.
A universal issue for most breast cancer patients undergoing transplantation
is pain, which affects them physically and psychologically. However,
she emphasized that there are many physical, psychological, and
social issues for which patients need support, advice, direction,
and assistance to help them cope. These may include scarring,
treatment-induced menopause in the young woman, vaginal dryness
that interferes with sex, the dying woman's concern for her young
children, and a single woman's concern for her changed sexual
Ms. Randolph said that the isolation she felt after her recent
relocation to West Virginia heightened her awareness of just how
alone many cancer patients are, and that women living in isolated
areas may simply not be aware of their options. "They may
not know about bone marrow transplants, or out-patient treatment,
or home-care facilities. It's imperative that we health-care professionals
link patients up with some of the many different resources available."
Identifying Psychological and Social Needs
Ms. Randolph stressed the importance of identifying and treating
psychological needs. Anorexia may be treatment-induced, or it
may be psychological due to depression because a patient feels
ugly or her relationship with her spouse has changed.
"Regardless of the type of treatment, all breast cancer patients
say life has changed--period," Ms. Randolph said. "No
one can take away the fact that they've had breast cancer, and
it has changed their hopes, dreams, and aspirations. All patients
fear recurrence. But patients who receive psychological support
usually survive longer than those who don't," she said, referring
to a 1990 report by Spiegel (Cancer 66:1422-1426, 1990).
One very difficult psychosocial issue is body image, Ms. Randolph
said, referring to the general media portrayal of women, which
is heavily biased toward appearance. Transplant patients deal
with loss of self-esteem and often have great difficulty facing
family, friends, and co-workers after treatment. Connecting patients
with support groups and counselors can have a major positive impact
in this area, she said.
Getting Women into Trials
Ms. Randolph said that most patients feel a certain bond to health-care
professionals because they understand the treatment and what the
patient is experiencing. Ms. Randolph believes that spending time
communicating with patients may even encourage participation in
randomized trials, so important to establishing the efficacy of
transplantation for breast cancer.
In her experience, most women with advanced disease feel they
have a right to transplant therapy and do not want to be in the
nontransplant group. However, she feels that if the importance
of randomized trials is explained fully, patients will often decide
to participate. Ms. Randolph said that she uses the example of
randomized trials in children with leukemia, which led to today's
improved life expectancy.