Kidney Cancer Canada calls for survivorship care plans to address the
unique needs of kidney cancer patients
TORONTO, Feb. 29, 2012 /CNW/ - According to a recent survey commissioned
by Kidney Cancer Canada (KCC), there is a disconnect between what
information urologists indicate they are communicating to kidney cancer
patients following surgery, and what patients and their caregivers say
they remember receiving. With National Kidney Month kicking off in
March, Kidney Cancer Canada is releasing its top 10 tips to help
improve patient survivorship.
"When patients are first diagnosed with kidney cancer the word "cancer"
takes a significant emotional toll, making this a difficult time for
them to absorb much information, let alone remember that information
long-term," says Catherine Madden, Executive Director, Kidney Cancer
Canada. "While many urologists provide patients with information about
their cancer, our data demonstrates it is crucial kidney cancer
patients receive survivorship information in writing following their
kidney cancer surgery to help them understand the importance of the
long-term surveillance and care required."
The national survey is the first-ever Canadian research on early-stage
kidney cancer survivorship and was conducted with kidney cancer
patients diagnosed in stages one through three, caregivers of kidney
cancer patients, and urologists. This study comes on the heels of a
recent report by the Canadian Cancer Research Alliance demonstrating
there has been no investment in survivorship projects related to kidney
cancer in Canada.i
"We commissioned this survey to get a better grasp of what urologists
are delivering and what patients remember hearing when it comes to
survivorship so we can shed light on what is needed for improved
survivorship outcomes," adds Madden.
About Kidney Cancer
In 2011, approximately 5,100 Canadians will have been diagnosed with
kidney cancer and 1,650 will have died from the disease.ii Approximately 75 per cent of new kidney cancer patients in Canada are
diagnosed in one of the first three (of four) stages of the disease.
For them, the first treatment step is to see a urologist to often have
part of or the entire affected kidney removed. For some of these
patients their cancer will recur, progressing to stage four metastatic
kidney cancer - the most serious form. Others will face separate health
challenges as a result of their kidney cancer surgery (e.g., increased
risk of chronic kidney disease and/or hypertension) - challenges that
can be serious on their own, or can further complicate metastatic
kidney cancer treatment in later years.
Urologists said they commonly inform their kidney cancer patients of
possible health outcomes as a result of the surgery, such as: risk of
kidney cancer recurrence (93 per cent of urologists say they share
this), increased risk of chronic kidney disease (83 per cent), and
increased risk of hypertension (73 per cent). However, 46 per cent of
patients/caregivers said they did not get anything like this. Of the
patients/caregivers who did receive information regarding possible
health outcomes, over two-thirds (68 per cent) did not get anything in
a written format.
In fact, when asked if following surgery the urologist said something
general like, "We got all the cancer. You can now get on with your
life," 73 per cent of kidney cancer patients/caregivers agreed. And,
62 per cent of patients/caregivers said they wished the patient's
urologist had given them more information following their surgery.
The need for a survivorship plan is further supported by many
patients/caregivers admitting to the patient dealing with emotional (71
per cent), physical (56 per cent), and psychological (52 per cent)
impacts as a result of their experience with kidney cancer. And, half
of patients/caregivers (51 per cent) said they were not prepared to
deal with these concerns. Interestingly, urologists may be
underestimating the prevalence of these issues as they said on average,
only about a third of their patients experience physical (31 per cent),
psychological (33 per cent), or emotional (31 per cent) impacts.
"Dealing with the diagnosis of kidney cancer had a huge impact on me
emotionally," says Maureen Campbell, kidney cancer patient. "I am
realizing, well after my treatment, that I need more information and
other supporting resources to better understand and manage the
long-term effects of my kidney cancer surgery."
To date, there are no formal survivorship care plans in existence in
Canada that address the unique needs of kidney cancer patients. An
individualized survivorship care plan would include specifics such as
the potential future health implications of kidney cancer surgery
(e.g., kidney function, cardiovascular issues), medications to avoid,
specific lifestyle habits to adopt, and the best ways to manage on
reduced kidney function. KCC advocates that patients receive the full
details of their kidney cancer (stage, cell type, grade, and risk of
recurrence) and be encouraged to share this information with any health
care providers they consult with in the future. All urologists
surveyed (100 per cent) and almost all patients/caregivers (98 per
cent) agree it is important for those impacted by kidney cancer to have
this type of detailed survivorship information.
"It is clear from these results that urologists and survivorship groups
need to work towards written survivorship care plans," says Dr. Michael
Jewett, Uro-Oncologist, Princess Margaret Hospital. "While urologists
often communicate general post-treatment information, many are not
providing the information in writing or giving the level of detail that
To help empower kidney cancer patients with the specific information
they need, Kidney Cancer Canada created "Top Ten Tips for Kidney Cancer
Survivors." The tips are available at www.kidneycancercanada.ca and provide recommendations for kidney cancer patients post-surgery.
About Kidney Cancer Survivorship
Cancer survivorship is most commonly defined as the process of living
with, through, and beyond cancer. It starts from the moment of
diagnosis and continues for the remainder of the person's life. Cancer
survivorship includes the physical, psychosocial and financial issues
that impact the person's well-being. Family members, friends and
caregivers are also considered cancer survivors as the experience
impacts them as well.
Kidney Cancer Canada
Kidney Cancer Canada is a Canadian-based, patient-led registered charity
established to improve the quality of life for patients and their
families living with kidney cancer. Kidney Cancer Canada advocates for
access to new treatments, provides support and information to patients,
funds much-needed research, and works to increase awareness of kidney
cancer as a significant health issue. For more information, please
The survey was commissioned by Kidney Cancer Canada, with funding from
Pfizer Inc., and conducted by Leger Marketing. Between November 17,
2011 and December 8, 2011, the survey was completed online with 276
patients and 45 caregivers of kidney cancer patients that have/had been
diagnosed at stages one through three. A further 40 urologists were
surveyed online from November 17, 2011 to November 24, 2011. A
probability sample of patients/caregivers of the same size would yield
a margin of error +/-5.9%, 19 times out of 20.
i Canadian Cancer Research Alliance, Investment in Research on
Survivorship and Palliative and End-of-Life Care, 2005-2008 Report, pg.
37. September 2011.
ii Canadian Cancer Statistics, 2011, Canadian Cancer Society.
SOURCE Kidney Cancer Canada
For further information:
Kidney Cancer Canada