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Kidney disease plays a major impact on the lives of children and adolescents, and their families. The burden of care and financial impact on the families of children and adolescents with kidney disease is significant. Caregivers often experience loss of income and job losses, which may then result in significant reduction in the overall financial wellbeing within the household. Financial burden may then lead to further psychological stress, reduced quality of life and potential decline in the child’s health.

Addressing the social determinants of health is a primary approach to achieving health equity. Understanding how social and economic factors impact the health of children with kidney disease will assist in the development of important strategies and interventions to eliminate health inequalities within this population.

The KCAD study is a longitudinal study following the health and well-being of 400 children and adolescents with chronic kidney disease across five different paediatric units in Australia and New Zealand. The study commenced in 2010, with the first cohort of children and adolescents (aged 6-18 years) and their caregivers.

The pimary objectives of the KCAD study
    1. Determine the prevalence of economic hardship among caregivers of school-aged children and adolescents with kidney disease.
    2. Better understand the social and economic determinants of health inequality in children with chronic kidney disease.
    3. Identify policies opportunities, interventions and strategies that may improve the health outcomes and overall well-being of children with kidney disease.
THE KCAD STUDY

Main Study

Our initial survey asks important questions about your child’s kidney disease, their education and quality of life, as well your families social and financial situation.

Follow up study

To gain a better understand of your child and families physical, social, educational and financial situation, we would like to ask you similar questions two and four years after the original survey.

Survey

For your convenience, we have developed an online survey to complete the questionnaires.

Psychology Study

A biennial assessment of your child’s intellectual functioning, memory and attention skills, and academic performance.

Not working was hard. Every time I decided, okay, right that's it, this is the next five year plan, this is what we're going to do, she'd end up in hospital.
Mother, 40s
You have to borrow some money then you have to repay that borrowed money back. We borrowed some money a couple of times. We had to pay it back and we're broke again. So we had to pay that back and you can't keep doing that or you're back in the same spot all the time. So we try and do it off our own backs and it doesn't always work.
Father, 40s
He walked out… Then of course, the mortgages weren't paid, the whole lot. All that basically escalated from in that first six months of diagnosis… The house was gone. the rental went, everything went, I couldn't work, there was no way I could pay it, the whole thing went. All I had was my car. Basically we were homeless in the car.
Mother, 40s

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