Kidney Disease greatly affects the lives of children, and young adults, as well as their families. The care needed for these young patients is demanding and has high costs. Families often face a loss of income and jobs, which can lead to serious money problems. This can cause more stress and lower the quality of life for everyone at home. Financial burden may then lead to further stress, lower quality of life and potential decline in the child’s health. Young adults with kidney disease may also have trouble working or studying because of their treatments, compounding the financial burden and stress.

Addressing social factors is key to achieving health equity for all. Understanding how social and economic factors impact the health of children, adolescents, and young adults with kidney disease is important. This knowledge helps us create helpful programs and inform policies to lower health inequalities.

The KCAD study aims to improve understanding of the health, cognitive, genetic, academic and quality of life outcomes in children, adolescents and young adults with kidney disease. We also wish to examine the impact of kidney disease on families’ and young adults’ financial wellbeing, aiming to identify the best ways to support those caring for children and young adults living with kidney disease.

• 1. Determine the prevalence of economic hardship among caregivers of pre-school children, school-aged children, adolescents and young adults 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 first phase of the longitudinal KCAD study followed the health and well-being of 377 children and adolescents with chronic kidney disease and their caregivers. The study took place across 5 children’s hospitals across Australia and New Zealand. The study started in 2010, with the first cohort of children and adolescents (aged 6-18 years) and their caregivers and concluded in 2016.

Phase 1 of KCAD resulted in a series of important findings, with 11 publications over the past 5 years in international journals and national conference presentations. The first phase has produced novel insights into the complex interactions between health and social determinants among children and adolescents with CKD.

For more information on this please visit the KCAD-1 page.

While KCAD Phase 1 provided invaluable insights, there are still critical gaps in evidence and policy that must be addressed. KCAD – phase 2 is a longitudinal cohort study and is an extension of the previous study (previously known as health and wealth in children and adolescents with chronic kidney disease (KCAD).

In the second phase of the study, we aim to:

• Invite the previous cohort to continue their follow-up
• Recruit new participants with an extended age range from pre-schoolers aged 3 years up to adolescents aged 18 years and their primary caregivers
• Introduce 2 new hospital sites: Perth Children’s Hospital and Westmead Public Hospital
• Utilise new and updated questionnaires
• Follow the cohort over 6 years
• Involve our patients/consumers
• Employ innovative outcomes and data collection methods

For more information on this please visit the KCAD-2 page.

These findings have played a pivotal role in influencing programs and policies and have led to the development of tailored interventions to eliminate health disparities.

The KCAD study also helped inform and design the NAVKIDS² trial. The trial aimed to assess the health benefits and costs of a patient navigator programme in children with CKD experiencing low SES or living in rural/remote areas. It was a mixed methods waitlisted RCT and the intervention was a patient navigator for 6 months.

For more information please visit the NAVKIDS website.