UNIVERSITY OF PITTSBURGH NKF SUMMIT 2014 STAFF …€¦ · 412-692-412-7-15213 NKF SUMMIT 2014 WINTER 2014 UPDATE Kidney Transplant Decision Making Study UNIVERSITY OF PITTSBURGH

Kellee Bornemann is our newest team member. Kellee has

played an integral role as our study has been coming to a close.

You may have reached Kellee when you called our study team.

She has been a great help with study tasks, data management,

and participant contact. Kellee has significant experience with

coordinating studies in the VA Pittsburgh Healthcare System.

Kellee is a native of the Pocono Mountains in northeastern PA.

She is currently obtaining her Masters of Public Health at the

University of Pittsburgh Graduate School of Public Health. When

she’s not busy with school work, Kellee enjoys cooking, art, and

shopping. Kellee is a terrific baker and loves perfecting recipes.

We are pleased to have Kellee with us and grateful for her help.

She has a great attention to detail and pleasant disposition. She

keeps up with our fast pace and always does it with a smile. We

hope you have enjoyed your encounters with Kellee as much as

we have enjoyed working with her.

STAFF SPOTLIGHT The Study Team

University of Pittsburgh Center for Research on Healthcare

Kidney Transplant Research

230 McKee Place, Suite 600

Pittsburgh, PA 15213

Kellee Bornemann Project Coordinator

Emilee Kohan Project Coordinator

Dr. Ronald Shapiro Clinical Coinvestigator

Dr. Larissa Myaskovsky Principal Investigator

WINTER 2014 UPDATE Kidney Transplant Decision Making Study

March is National Kidney Month! As a way to fo-

cus the nation’s attention on kidney health, the

National Kidney Foundation is hosting a Kidney

Patient Summit. The summit will take place

March 3-5, 2014 in Washington DC. Chronic kid-

ney disease patients, dialysis patients, caregivers,

transplant recipients, living kidney donors, and

their families will travel to the capital to speak to

Congress about the importance of awareness,

prevention and treatment of kidney disease. Ad-

vocates will be asked to share their stories about

their experiences with kidney disease, donation,

or transplant. To find out how you can participate

in National Kidney Month from home, please

email [email protected].

We welcome your comments,

suggestions, or questions.

E-mail: [email protected]

Call: 412-692-4856 412-647-0450

MAIL: Kidney Transplant Research c/o Dr. Larissa Myaskovsky

University of Pittsburgh

Center for Research on

Health Care

230 McKee Place, Suite 600

Pittsburgh, PA 15213

NKF SUMMIT 2014

WINTER 2014 UPDATE

Kidney Transplant

Decision Making Study

UNIVERSITY OF PITTSBURGH

Hello and belated Happy New Year from the kidney trans-plant research team! Now that 2013 is behind us and 2014 is in full swing, we want to wish the best for you and yours in the coming year. We also want to thank you for your continued help with our research.

Our latest issue of this newsletter was bittersweet for us to write, because it is also our final installment. After more than 4 years working on this project, our work is coming to an end. We are so grateful to all of our partici-pants for making this research possible and for helping countless patients in the future with the information you have provided us. As always, in this semi-annual newsletter, we include an update of our project, a kidney-friendly recipe, updates from the National Kidney Foundation, and information about upcoming events, programs, and resources that may be of interest to you and your loved ones. We hope you enjoy the final installment of our newsletter. The purpose of our study was to determine how patients’ beliefs, experiences, and attitudes are related to receiving a living or deceased donor kidney transplant. Your partici-pation helped us to understand how people make deci-sions about their treatment options for kidney transplan-tation. Your responses also helped us to determine how to tailor interventions that may help to increase the rate of kidney transplantation in people with end-stage kidney disease. We reached our study recruitment goal in the fall of 2012, with a total of 1224 participants enrolled in our study. Of that number, 1,152 participants have completed their first interview. Of those 1,152 participants, 923 have

RESEARCH STUDY

PROGRESS

A BIANNUAL PUBLICATION OF DR. LARISSA MYASKOVSKY AND THE UNIVERSITY OF PITTSBURGH KIDNEY TRANSPLANT RESEARCH TEAM

completed their second interview and 134 have com-pleted their third and final interview. So far, 38 percent of the participants in our study are women and 62 per-cent are men. The average age of study participants is 55 years old, with an overall range in age of 18–89. In addition to presentations in the spring of last year at the annual meeting of the American Transplant Con-gress in Seattle, WA on May 21, 2013, Dr. Myaskovsky and her team have shared preliminary results of this work at the Academy Health Annual Research Meeting in Baltimore, MD. Presentations are also scheduled and/or planned for the University of New Mexico, the Uni-versity of Pittsburgh, the semi-annual meeting of the Center for Organ Recovery and Education, the local or-gan procurement organization in Allegheny County, and the World Transplant Congress in San Francisco, CA. Final data analyses and write up are currently underway and the first of several manuscripts based on this work will be submitted for publication in early 2014. Sincerely, Dr. Larissa Myaskovsky and the Kidney Transplant Research Team

mailto:[email protected]

The National Kidney Foundation’s Kidney Walk is part of a community

fundraiser to support the prevention and early detection of kidney disease

and to raise awareness of the need for organ donation. Walkers include

kidney patients, transplant recipients, organ donors, families, friends, sup-

porters, and local businesses. The contributions will benefit programs and

services for kidney patients, transplant recipients, organ donors, and their

families. Kidney Walks take place in communities all over the country,

with over 100 events each year. To become involved in future kidney

walks by registering as an individual walker or team, volunteering, or

donating, visit http://walk.kidney.org.

The 12th annual Pittsburgh Kidney Walk took place on Sunday, November 3, 2013. Although it was a very cold

morning, nearly 2,000 gathered at the Pittsburgh Zoo & PPG Aquarium in support of the millions living with chronic

kidney disease. This was the Pittsburgh kidney walk’s largest turn out yet! Our own Dr. Larissa Myaskovsky, the PI

for the Kidney Transplant Decision Making Study, and her family attended this year's annual Kidney Walk and held

the sign for Team UPMC. Dr. Ron Shapiro of the VA Pittsburgh and the Starzl Transplant Institute and his wife, Mary,

were there as well. So far, the walk has raised nearly $190,000 of its $215,000 fundraising goal, which is also the

highest amount ever raised in Pittsburgh.

UNIVERSITY OF PITTSBURGH

KIDNEY WALK 2013

The Transplant Games of America will take

place July 11-15 2014 in Houston, TX. The

Donate Life organization has recently part-

nered with the Transplant Games of America

to promote and increase donation of organ, eye, and tissue

across the country. The theme for 2014 will be “Celebrating the

Gift of Life-A Legacy Lives On.” The festival is a multi-sport event

for patients who are transplant recipients and those who have

given the gift of life with a live donation. The games host a varie-

ty of interesting events that range from a 5K race/walk, to a ball-

room dancing competition, to a trivia contest. This event cele-

brates the gift of life and the lives of donors and recipients. For

more information on this year’s festivities, please visit http://

www.transplantgamesof america.org/. Also, find the TGA on

Facebook at https://www.facebook.com/pages/Transplant-

Games-of-America/218395054888480 for current updates and

information.

Transplant Games of America

Dialysis Cartoon by Peter Quaife, the Lighter Side of Dialysis. For more information and dialysis humor, please visit: http://kidneykorner.com/AK/Comics.html.

World Kidney Day is celebrated annually

on the second Thursday in March. The

global event is a joint International Society of Nephrology and Inter-

national Federation of Kidney Foundations initiative that aims to

foster public awareness of kidney disease and promote overall kid-

ney health worldwide. World Kidney Day 2014 will take place on

March 13, 2014, marking the 9th annual WKD. The campaign theme

for 2014 is “Think about your kidneys.” Over 100 countries partici-

pated in last year’s event which included street events and fairs,

public screenings, symposiums, publications, videos, photos, and

media coverage around the world. To find more information about

World Kidney Day 2014 and how to become involved, to receive

promotion materials, or to participate in registered events in the

future, please visit http://www.worldkidneyday.org/.

WINTER 2014 UPDATE Kidney Transplant Decision Making Study

Resource List

WORLD KIDNEY DAY

Get involved with NKF:

http://www.kidney.org/about/membership.cfm

Healthy recipes at the NKF Kidney Kitchen:

http://www.kidney.org/patients/kidneykitchen/

Find your local NKF chapter:

http://www.kidney.org/about/offices.cfm

Browse useful information with UNOS Donate Life:

http://www.unos.org/

Find facts at the American Kidney Fund:

http://www.kidneyfund.org/advocacy/kidney-disease-

resources-and-information/

Visit Just Harvest for help with life’s challenges:

http://www.justharvest.org/

Please see prior newsletters for more resources. Please

visit our study blog:

http:kidneytransplantresearchstudy.wordpress.com/

NKF KIDNEY KITCHEN RECIPE

Cupcake Recipe Yields: 24 cupcakes

3 Granny Smith apples, peeled, cored and diced 1/4 cup caramel flavored syrup - sugar free 1 yellow cake mix, sugar free 1/4 cup vegetable oil

CARAMEL APPLE CUPCAKES

Microwave diced apples for five to six minutes, until they are soft. Smash them with a potato masher and let cool to room temperature. In a mixing bowl, add cake mix, apples, caramel fla-vored syrup, eggs, oil and water. Mix on low for 1 minute and mix on medium-high for 2 minutes, scraping the bowl to make sure the batter is completely mixed. Fill 24 cup cake liners with 2/3 fill of batter and bake at 325 F for 20 to 30 minutes. Use a toothpick to stick in the middle to check for doneness, if the toothpick comes out clean, the cupcakes are baked.

Frosting Recipe

1/2 cup water

8 oz of Sugar Free Vanilla Frosting

2 tablespoons plus 1 1/2 teaspoons of caramel fla-

vored syrup, sugar free

4 1/2 oz Jellybeans

Beat frosting with caramel flavoring. Frost cup-

cakes and sprinkle the tops with jellybeans.

Please consult your physician or dietician before

making any changes to your diet. This recipe was

submitted by CKD patient and chef Duane Sun-

wold, and may be appropriate for those on dialy-

sis and those with diabetes or a kidney transplant.

Analysis: Calories 183, total fat 7.3 g, saturated fat

1.3 g, monounsaturated fat 2.3 g, polyunsaturated

fat 2.7 g, cholesterol 27 mg, calcium 34 mg, sodium

174.5 mg, phosphorus 81.7 mg, potassium 45.6

mg, total carbohydrates 29.5g, dietary fiber 1.4g,

sugar 5.4g, protein 1.8 g.