Quality of Life in Youth Receiving Dialysis Treatment

The number of children with kidney disease is steadily increasing, and unfortunately little is known about how children feel about having kidney disease and how chronic kidney disease impacts their lives. In a cooperative effort, the Centers for Medicare & Medicaid Services (CMS), several ESRD Networks, and a team from the Division of Pediatric Nephrology at Johns Hopkins Medical Institution are conducting a large-scale examination of how children with kidney disease view their lives. All children between the ages of 8 and 18 are eligible to participate, and all information will remain confidential.

The project’s objective is to better understand children’s experiences, from their point of view, and to use the information about their experiences to better understand which treatment options may provide a better quality of life. Please review our Pediatric Quality of Life brochure and contact us toll-free at 866-651-6272 if you would like your child to participate or if you have any questions.

All identifying information will be removed before being analyzed by the project team at Johns Hopkins.

Participating Networks:
ESRD Network of New England, Inc. (covering CT, ME, MA, NH, RI, & VT)
ESRD Network of New York, Inc. (covering NY)
Mid-Atlantic Renal Coalition (covering DC, MD, VA, & WV)
FMQAI: The Florida ESRD Network (covering FL)
The Renal Network Inc. (covering IN, KY, OH, & IL)
ESRD Network #12 (covering IA, KS, MO, & NE)
ESRD Network Organization #13 (covering AR, LA, & OK)
ESRD Network of Texas (covering TX)
Northwest Renal Network (covering AK, ID, MT, OR, & WA)