2018 E-Newsletter

As 2018 is drawing to a close, we want to thank you for your ongoing participation in the Kids Health and Wealth study. Your ongoing contribution will help to improve understanding of the health, cognitive, academic and quality of life outcomes in children and adolescents with kidney disease.

Update & findings

We are pleased to let you know that the two year follow up has now been completed across all sites, which includes Sydney, Queensland, Melbourne and New Zealand. We are still trying to catch up with a few families – and we look forward to hearing back from you soon!

Having collected information from you at two time points will give us a better understanding of your child’s and family’s needs. After the four year follow up has finished we hope this will provide us with a lot more of an understanding.

Some interesting findings from our two year follow up include:

  • 50% of participants have had a transplant
  • 50% participants are now in high school
  • 20% of participants have now left school and working or studying at TAFE/University
  • Over half of the participants play sport with soccer, swimming and tennis the most popular
  • Most (40%) parents/carers or the child themselves rated the child’s health as good, with 16% rating it as excellent and only 4% rating as poor

We have also had a total of 52 families complete the psychology assessment with our study psychologist, Dr Jennifer Lorenzo. Approximately two thirds of the families have completed the 2nd assessment and we are currently booking in families for their 3rd assessment. The annual session aims to determine your child’s level of intellectual functioning, memory and attention skills and academic performance.

Our team has also been busy preparing the results from the initial questionnaires you completed. Based on one of the questionnaires, the Health Utilities Index, we found that our participants experienced significant deficits in quality of life, regardless of what CKD stage. The domains that most affected their quality of life were cognition, pain and emotion. We also found that children and adolescents were more likely to have poorer quality of life if there were on dialysis, were of low socioeconomic status and had problems with short stature.

From the team at Kids with CKD we thank you for your ongoing involvement in the study. We wish you a wonderful Christmas and New Year, and we look forward to hearing from you in 2019.

www.kidswithckd.com.au   |   [email protected]