My Kidney Health
January 2018 Newsletter
Meet our Study Team:
Above are members of our research team at the Children’s Hospital of Philadelphia. We collaborate with research coordinators at your child’s hospital/medical center, so that we can collect personal experiences from children and their parents across the entire country. 

Below is a map showing the sites that are included in this study:
What is a Patient-Reported Outcome (PRO) measure?
In our study, we’re interested in learning about the day-to-day experiences of you and your child. A PRO (Patient-Reported Outcome) measure asks the patient (and in this case, caregiver) to report on their own experiences. In particular, questions in this study ask about the following areas, and how they change depending on the health status of your child:

Youth PRO measures:                          
  • Fatigue
  • Sleep Disturbance
  • Sleep-Related Impairment
  • Psychological Stress Experiences
  • Life Satisfaction
  • Meaning and Purpose

Parent PRO measures:
  • Global Health
  • School Performance
  • Family Relationships
  • Anxiety
  • Depressive Symptoms
  • Positive Affect
What our participants are saying:

"The questionnaires were great fodder for conversations with our son - Thank you!" 
-Parent participant
 
"I know there is an impact on her regular daily activities, so it would be interesting to understand how much impact occurs, and what can be done to intervene and help kids like her manage the stress of chronic illness."
-Parent participant

"My hope for my child in this study is that as she gets older, she starts to understand what it really means to have CKD and what she needs to do to protect herself and what this disease really means."
-Parent participant
Happy New Year to you and your family!
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Recruitment :
See how well your site is doing!
Recent CKD Research:

Measurement of quality of life and attitudes towards illness in children and young people with chronic kidney disease
Health J., Norman P., Christian M., & Watson A., 2017

Article findings:
  • "The quality of life of young people with CKD is comparable to data available from their healthy peers, despite them living with CKD. This suggests that young people may be able to adapt to their condition and cope well with many of the associated biopsychosocial consequences."
  • Males tend to have more negative attitudes about their illness as a result of the effects of CKD on physical stature
  • A more positive perception of the child's CKD can serve as a resource to help families and the child successfully adapt to the condition and its demands

You can access the entire article by clicking on this link .
Are there things you would like to see in our next Newsletter? Let us know at:

Reach out to us with any questions:
Email address: KidneyHealthStudy@email.chop.edu
Phone number (text or call):
215-528-3689
Be sure to visit our website!