SSB Attachment 3 Participant Newsletter

A   P U B L I C AT I O N   O F  T H E  W O M E N ’ S   H E A LT H   I N I T I AT I V E   •   2 0 1 2 – 2 0 1 3

T

HERE ARE CURRENTLY over 93,500 participants in the WHI
Extension Studies—an amazing group of women who have been
contributing health information for over 15 years!
.
While WHI
participants are no
longer participating
in the active study
interventions or
attending annual
visits, there are still
plenty of activities
going on in the

Extension Studies.
As a WHI participant, we appreciate
your willingness to continue completing
the health updates each year, which are
crucial in helping us understand more
about how women age. In addition to
the health update, there are usually one
or two other forms women are asked to
complete each year, which help us answer
other questions aimed at improving the
health and quality of life of women as
they age. These forms vary from year to
year, and cover topics ranging from your
ability to perform the ongoing activities
of daily living, to hormone use, to the

medications and supplements you
take. If you ever have any problems
completing any of your annual forms,
for example, due to declining vision
or health, please call your regional
center at the phone number listed on
the back of this newsletter. A WHI
staff member will always be glad to
assist you in any way they can.
In addition to these routine (but
critically important) study activities,
there are several other special studies
being done with WHI participants.
One exciting new project is the
WHI Long Life Study. Scientists and
leaders at the National Institutes of
Health funded this addition to WHI
in order to learn even more about
women’s health, aging, and the health
effects of physical activity. About
12,000 eligible WHI Extension
Study participants were asked to
join this study between January and
November 2012. Only a sample of
Continued on p. 2

3
4
6

Letters to
the Editor

Focus on
Findings
Keeping
Your Mind Fit
As You Age

8

Center
Information

The Long Life Study
was funded in order
to learn even more
about women’s
health, aging, and
the health effects of
physical activity.

INSIDE THIS  ISSUE

What’s New in WHI

WHAT’S NEW IN WHI

W H AT ’ S N E W I N W H I

Continued from cover

2

WHI participants were needed for the Long Life
Study, so not all eligible WHI women were invited
to join. In the Long Life Study, a research assistant
visited the participant
in her home to collect
a blood sample and
measure height, weight,
waist circumference,
grip strength, balance,
and walking speed. In
addition, women in
the Long Life Study
were invited to join
the Physical Activity
Study, in which they
completed an additional

questionnaire, wore a physical activity monitor
(called an “accelerometer”) for 7 days, and tracked
their falls during the 12 months following the study
visit.
More information about the WHI Long Life
Study, the Physical Activity Study, and some of the
other WHI studies, activities, and results can be
found on our website, www.whi.org.

LEFT: Dr. Andrea LaCroix holds several accelerometers,

which are small monitors that Physical Activity Study
participants wear on their hips to provide an objective
measure of everyday activity. These devices measure
vertical, horizontal, and perpendicular activity, as well
as the times when no movement is happening. These
data will help researchers come up with realistic activity
guidelines for healthy aging.

Snapshot of WHI Participants in 2012
We continue to collect health information
from WHI participants everywhere, even as
they move around the country and the world!
There are currently 111 WHI women living
outside the U.S. in 34 different countries,
including such far-flung places as Australia,
Croatia, El Salvador, Estonia, Finland, India,
South Africa, and Trinidad. Within the U.S., WHI
women now live in every single state; California
has the most participants at 15,576, and North
Dakota the least at 9.
The current mean average age of WHI
participants nationwide is 78 years old. The
youngest WHI participant is a mere 63, with the
oldest being 98! The chart on the right shows the
percentage of WHI women currently in their 60s,
70s, 80s, and 90s.

80s

35.9%

W

R TICI
HI PA

90s
60s
4.4%

S
PANT

70s

49.5%

10.2%

Letters to the Editor

W

DEAR WHI MATTERS: I have a question about
an article in the WHI Matters, concerning the
GWAS. If the study doesn’t link my blood to
my identity, how can scientists find out what
genetic factors are associated with diseases “such as
diabetes, hypertension, heart disease, osteoporosis,
cancer, and dementia?” Wouldn’t it be of help, if
I answered a questionnaire indicating that I had
any of the above diseases, if you could identify my
blood sample?
Sincerely, Participant from Northridge, California
ANSWER: This is a very good question. When we
say that the blood is not linked to your identity,
we are specifically referring to your name and
contact information. We do link the blood samples
to the questionnaire data you provide each year,
to help learn more about the diseases we are
studying. All samples and questionnaire data are
given an ID number in place of your name, which
is used to link the data. This ID number ensures
that your data and samples remain anonymous
and confidential, and that no one working in the
laboratory, for example, will ever know your actual
name. Scientists can then link the information
from your blood sample and your questionnaire
data to conduct their research, without ever
needing to access your name.

DEAR WHI MATTERS: I enjoy every issue and
would be really interested in an article that explains
in more detail how you are using the cohort that was
not part of any of the individual studies. Or even
more than one article. Since I’m in that group, which
I’m guessing is pretty large, I’m always trying to
figure out how I contributed to any particular study.
Thank you, Participant from Reston, Virginia
ANSWER: The original part of WHI consisted of
three Clinical Trials (Dietary, Hormone, Calcium/
Vitamin D Supplementation) and an Observational
Study. The Observational Study (OS) was the
largest part of WHI, and included all of the women
who were not actively participating in one of the
Clinical Trial interventions. From your question,
it sounds like you were part of the OS. Hundreds
of findings and publications have resulted from
data provided by women in the OS over the years.
In this and other newsletters you’ve received in
the past, any reported study results that say they
used data obtained from Observational Study
participants are referring to your study cohort. The
data obtained from OS participants are a major
part of what we are learning about women as they
age, so rest assured that you have made and will
continue to make a major contribution to what we
are learning about women’s health.
Continued on next page

LETTERS TO THE EDITOR

E FREQUENTLY receive letters from WHI participants,
as well as handwritten notes that are included in the
returned data packets. We truly enjoy reading all of your
letters and comments, even if we are not able to personally
respond to each one. Here are excerpts from a few letters,
as well as answers to some of the questions we have received
from WHI participants over the past year.

3

LETTERS TO THE EDITOR

KEEPING YOUR MIND FIT

Continued from p. 3

DEAR FRIENDS: I am glad of the opportunity to
let you know that I’m pleased to be a part of such
a worthy endeavor. Whatever good those few vials
of blood can contribute to women’s health, I am
proud to have had the chance to give them. May
you continue with your worthwhile studies.
Sincerely, Participant from Warwick, Rhode Island
DEAR EDITOR: I couldn’t resist responding to
your newsletter. I am still very proud to be a
participant in the study. I eat a very healthful diet,
which I think is the most important thing. I have
many interests, and they keep me happy. Eating
very well, a few good friends left in their 90s, and
lots of interests seem to work for me. I know you
do have access to the records, but I still wanted to
say “thank you” for the wonderful efforts you make
for women the world over.
Participant from Oakland, California

4

Letters: We love to hear feedback on the
newsletter. We regret that we cannot answer
questions about individual medical conditions.
Send letters to:
WHI Matters
Fred Hutchinson Cancer Research Center
1100 Fairview Ave N
M3-A410
P.O. Box 19024
Seattle, WA 98109
Staff Information: WHI Matters is produced
by the WHI Coordinating Center at the Fred
Hutchinson Cancer Research Center.
Editor: Julie Hunt, Ph.D.

Keeping Your Mind Fit as You

W

HILE MANY PEOPLE will suffer from dem
disease as they age, these conditions are not i
who have a genetic predisposition. Many exp
prevent or at least delay cognitive decline by keepin
years. Here are several ways that may help prevent t
some people experience in their senior years:
Get regular exercise

Physical exercise has
been linked to brain
health, and higher exercise levels, compared
with lower levels, are
believed to help reduce
the risk of dementia.
The type of exercise is
up to you, but most
experts recommend that
you try to get 20-30
minutes of moderate activity on a daily
basis. Even as little as 15
minutes of exercise three
times per week has been
found to be beneficial in
helping maintain brain
function. Other research
has found that weight
training (also known as
resistance training or
pumping iron) may help
improve cognitive functioning. Of course, you
should always consult
with your health care
provider before starting
any new type of exercise
program.

Follow a healthy diet

Results from several
large studies suggest that
a heart-healthy diet that
includes vegetables, fruit,
nuts, beans, and fish may
help slow the rate of cognitive decline and reduce
the risk Alzheimer’s Dis-

Your Brain Workout

Exercising your brain can be as
body. Here are a few ideas for m
stimulating and entertaining, i
your overall health.

Solve puzzles­—Doing crossw
any type of word, number, or g
your brain. Over time, try to so
puzzles to maximize the effect

Play strategy games—Strateg
Monopoly will exercise your rig
creatively. If you don’t have a p
basis, many of these types of g
internet or for your computer.

Incorporate music—Listening
stimulate different areas of the
type of music, memorizing the
play a musical instrument.

u Age

mentia or Alzheimer’s
inevitable, even in those
perts believe you can
ng your mind fit over the
the mental decline that

Chronic stress floods
your brain with cortisol, which can lead
to impaired memory.
Researchers suggest that
meditation and mindfulness-based stress
reduction, where you
focus your attention on
sensations, feelings, and
state of mind, can help
reduce these harmful
stress hormones.
Take care of
your health

Chronic health
conditions like
diabetes, obesity, and

hypertension have been
linked to dementia; it’s
possible that controlling
these diseases may
help delay the onset.
Be sure to follow your
doctor’s orders about
diet, exercise, and taking
prescribed medications.

Exercise your brain

Last, but certainly not
least, studies have shown
that challenging your
brain can increase the
number of brain cells
and the connections
between cells, which
may protect against the
symptoms of dementia.
Enjoy your friends
Challenge yourself by
A few studies have indi- learning new things, like
cated that having many
sudoku or bridge; the
social networks may help younger you are when
lower dementia risk. A
you start, the better.
full social life may provide emotional and mental stimulation, which
may protect against
memory declines.

t

s important as exercising your
mental exercises, which can be
in addition to being beneficial to

word puzzles, sudoku puzzles, or
geometric puzzle, will exercise
olve harder and harder types of
t.

gy games, such as chess or
ght brain and help you think
partner to play with on a regular
games are available on the

g to and playing music can
e brain, so try listening to a new
e lyrics of a song, or learning to

5

Change your habits­—Try changing your routine,
such as rearranging your desk or living space.
You can also try doing your regular activities in a new
way, such as using the opposite hand to brush your
teeth, or taking a shower with your eyes closed.
Read—Reading flexes your brain muscles and can
help build up a cognitive reserve that may help delay
the onset of dementia. To boost that reserve even
more, try memorizing a favorite poem or passage.
Find a new hobby—Hobbies can challenge your
brain to learn new skills or try new things, such as
learning to draw or paint. By finding something
that interests you, you’ll exercise your brain without
feeling the effort.
Learn a new language­—Learning a new language
activates a part of your brain that hasn’t been used
since you originally learned to talk. Learning and
using more than one language may stimulate your
brain and keep connections healthy.

YOUR BRAIN WORKOUT

ease. Researchers have
found that omega-3
fatty acids in fish are
important for maintaining heart health, and
many believe that they
may be just as important for maintaining
brain health.

Avoid or reduce stress

Challenging your
brain can increase the
number of brain cells
and the connections
between cells, which
may protect against
the symptoms of
dementia.

Focus on Findings

W

FOCUS ON FINDINGS

HI RESEARCHERS continue to use the information
provided by WHI participants each year to publish scientific
papers and presentations on women’s health. Here are just a
few of the dozens of findings that were published in the past year.

6

n Social Influences and Smoking

the psychological and social factors associated with
attending religious services. Eliezer Schnall, PhD,
(Psychology of Addictive Behavior, October 2011)
and his associates looked at this issue by studying
The purpose of this study, conducted by Charles
92,539 women in the WHI Observational Study
J. Holahan, PhD, was to examine the role of two
who answered questions on religious service
types of social influence (social support and living
attendance, psychological characteristics, and
with a smoker) on smoking behavior among WHI
social support. They found that women attending
Observational Study participants. Included in this
services weekly during the past month, compared
study were 37,027 women who reported smoking
with those not attending at all in the past month,
at some time in their lives at the time of study enwere less likely to be depressed and were more
rollment. Results showed that social support was as- likely to be optimistic. These women were also
sociated with a lower likelihood of being a current
more likely to report overall positive social support
smoker. Living with a smoker was associated with
(including emotional/informational support,
a higher likelihood of being a current smoker and,
affection support, tangible support, and positive
among smokers, of being a heavier smoker. Moresocial interaction), and were less likely to report
over, social support predicted a higher likelihood
social strain. Overall, results indicate that regular
and living with a smoker predicted a lower likeliattendance at religious services may be associated
hood of having quit smoking at one year after study with a more optimistic, less depressed, and less
enrollment. When looking at former smokers who
cynical outlook on life.
were not smoking at study enrollment, social support predicted a lower likelihood and living with
n Developing a Positive Aging
a smoker predicted a higher likelihood of smoking
relapse one year later. These results indicate that
Phenotype for Older Women
social influences are an important part of smoking
(The Journals of Gerontology, April 2012)
status, smoking level, stopping smoking, and smokTo develop a positive aging phenotype (i.e.,
ing relapse among middle-aged and older women.
the observable characteristics of a person,
as determined by both genetic makeup and
n Psychological and Social
environmental influences), Nancy Woods, PhD,
and her colleagues studied data collected from
Characteristics Associated
WHI Clinical Trial and Observational Study
with Religiosity
participants aged 65 and older at enrollment.
(Journal of Religious Health, March 2012)
Their goal was to describe the multiple dimensions
Previous studies have found a link between
of positive aging and their relationships to one
religiosity and health outcomes, possibly because of another in women over age 65, and to use these

n Diabetes and Lung Cancer
(Diabetes Care, May 2012)
Juhua Luo, PhD, and her colleagues looked
at data from over 145,000 Clinical Trial and
Observational Study WHI participants to assess
the link between diabetes and risk for lung cancer.
Of the over 145,000 women studied, 8,154 had
diabetes at the time they joined the study. After
an average of 11 years of study follow-up, 2,257
of the 145,000 women had been diagnosed with
lung cancer. Information on the therapies women
used to treat their diabetes was collected using
questionnaires that asked women to report on
their treatment history, as well as a review of
current medications brought into the enrollment
visit. Researchers found that women who reported
having treated diabetes had a significantly higher
risk of lung cancer than those without diabetes,
with risks increasing for women who required
insulin treatment. However, there was not a
significant association between lung cancer risk
and diabetes not treated with medication or with
duration of diabetes. The findings suggest that
additional research is needed to investigate the
relationship between diabetes, treatments for
diabetes, and lung cancer risk.

20

12

WHI’s Hormone
Therapy Findings
—10 Years Later
Ten years ago in July 2002, WHI participants were
the first to learn the startling results from one
of the WHI Hormone Trials, which indicated that
women taking estrogen plus progesterone had
significantly higher risk of heart disease, stroke,
and breast cancer. Two years later, the findings
from the WHI estrogen-alone hormone trial were
also released. Although estrogen-alone did not
carry the same health risks as estrogen plus
progesterone, it did increase the risk of stroke.
When the WHI's hormone therapy trials started
in 1993, previous studies had indicated that these
therapies, in addition to relieving hot flashes and
other menopausal symptoms, could help prevent
heart disease, hip fractures, and other diseases.
It therefore came as quite a shock to the medical
community and the public in general to learn that
these hormones actually increased the risk for
some of these diseases.
At the time the first results were published,
about 15 million women in the U.S., and millions
of women around the world, were taking these
hormone therapies to help ease symptoms of
menopause and to prevent broken bones and
heart attacks. Now, ten years later, the number of
women around the world using hormone therapy
has dropped dramatically; this drop has been
followed by large decreases in the rates for several
diseases. For example, researchers estimate that
because of the decrease in hormone use, there
have been 15,000-20,000 fewer cases of breast
cancer each year in the U.S. alone.
As a WHI participant, you can be proud of
playing a role in this ground-breaking research. By
joining in WHI, you have been part of a project that
has had a huge and potentially life-saving impact
on women around the world!

FOCUS ON FINDINGS

indicators to help predict years of healthy living,
years of independent living, and mortality. Dr.
Woods identified a multi-dimensional phenotype
of positive aging that included two factors:
Physical-Social Functioning and Emotional
Functioning. Both factors helped predict mortality,
healthy living, and years of independent living,
but Physical-Social Functioning was the strongest
predictor. Higher Physical-Social Functioning was
associated with a reduction in mortality risk, major
health conditions or hospitalizations, and risk of
dependent living.

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02-

7

Women’s Health Initiative
Clinical Coordinating Center
1100 Fairview Ave N, M3-A410
P.O. Box 19024
Seattle, WA 98109-1024

C E N T E R   I N F O R M AT I O N

2012-2013

8

PRSRT STD
U.S. POSTAGE

PAID

SEATTLE, WA
PERMIT NO. 1147

Change Service Requested

Stay in Touch} Please call your Regional Center if your address or phone number changes.
To locate your Regional Center, find the name of your WHI clinic center on the list below.
The Regional Center and phone number for each center is shown in the right-hand column.
WESTERN REGIONAL CENTERS
Kaiser Permanente/Bay Area Clinic, Oakland, CA
South Bay WHI Program, Torrance, CA
Stanford University/San Jose Clinical Center, Palo Alto, CA
UCLA Center for Health Sciences, Los Angeles, CA
University of California, Davis, CA
WHI-UC Irvine Clinical Center, Orange, CA
Center for Health Research, Portland, OR
University of Arizona, Phoenix, AZ
University of Arizona, Tucson, AZ
University of Hawaii School of Medicine, Honolulu, HI
University of Nevada, Reno, NV
UC San Diego Clinical Center, Seattle, WA
Seattle Clinical Center, Seattle, WA
MIDWESTERN REGIONAL CENTERS
Evanston Hospital (Northwestern University), Evanston, IL
Northwestern University, Chicago, IL
Medical College of Wisconsin, Milwaukee, WI
Rush-Presbyterian-St. Luke’s Medical Center, Chicago, IL
Ohio State University, Columbus, OH
University of Cincinnati College of Medicine, Cincinnati, OH
Berman Center for Outcomes and Clinical Research,
Minneapolis, MN
University of Iowa, Davenport, IA
University of Iowa, Des Moines, IA
University of Iowa, Iowa City, IA
University of Wisconsin, Madison, WI
Detroit Clinical Center, Detroit, MI
University of Pittsburgh, Pittsburgh, PA

Stanford University
(650) 725-5307
(888) 729-8442

University of Arizona
(520) 321-7440
(800) 341-7672
Fred Hutchinson
Cancer Research
(800) 514-0325
Ohio State
University
(614) 688-3563
(800) 251-1175

University of Iowa
(515) 241-8989
(800) 347-8164

Univ. of Pittsburgh
(412) 624-3579
(800) 552-8140

NORTHEASTERN REGIONAL CENTERS
New Jersey Medical School, Newark, NJ
UMDMJ – Robert Wood Johnson Medical School, New
Brunswick, NJ
Albert Einstein College of Medicine, Bronx, NY
School of Medicine, SUNY, Stony Brook, NY
University of Buffalo, Buffalo, NY
Brigham and Women’s Hospital, Chestnut Hill, MA
Charlton Memorial Hospital, Fall River, MA
Memorial Hospital of Rhode Island, Pawtucket, RI
UMASS/FALLON Women's Health, Worcester, MA
George Washington University, Washington, DC
WHI of the Nation’s Capital – Medstar, Hyattsville, MD

SOUTHEASTERN REGIONAL CENTERS
UNC Women’s Health Initiative, Chapel Hill and Durham, NC
Women’s Health Initiative of the Triad, Greensboro, NC
Women’s Health Initiative, Winston-Salem, NC
University of Tennessee, Germantown, TN
University of Tennessee – Medical Center, Memphis, TN
Baylor College of Medicine, Houston, TX
University of Texas Health Science Center, San Antonio, TX
University of Alabama, Birmingham, AL
Emory University, Decatur, GA
University of Florida Clinical Center, Gainesville, FL
University of Florida Clinical Center, Jacksonville, FL
University of Miami School of Medicine, Miami, FL

University of
Buffalo
(855) 944-2255
(716) 829-3128
Brigham and
Women’s Hospital
(617) 732-9860
(800) 510-4858
WHI of the Nation’s
Capital – Medstar
(301) 560-2924

Wake Forest
University School
of Medicine
(336) 713-4221
(877) 736-4962

University of
Florida, Gainesville
(352) 294-5211
(800) 944-4594

WHI CLINICAL COORDINATING CENTER
Fred Hutchinson Cancer Research Center, Seattle message line (800) 218-8415