A helping hand for families affected by chronic kidney disease

22 February 2019
Patient navigators

A clinical trial for children with chronic kidney disease (CKD) will help address health inequities experienced by children with CKD from low socioeconomic backgrounds.

The trial received funding under a national program of the Medical Research Futures Fund to boost clinical trial activities into rare cancers, rare diseases and unmet needs. Subject to receiving all ethics and regulatory approvals, the aim is for the trial to begin later this year.

Associate Professor Germaine Wong, co-lead of the Centre for Kidney Research and transplant nephrologist at the Children’s Hospital at Westmead and Westmead Hospital will lead the trial, which has the potential to significantly improve the lives of children with chronic kidney disease.

“CKD is a devastating illness in children associated with increased mortality, reduced quality of life, impaired growth and neurocognitive impairment,” says A/Prof Wong.

“Our research has shown that children with CKD from low socioeconomic backgrounds are at least twice as likely to experience poorer overall health when compared to those in the highest quartile of socioeconomic status.”

The NAVKID2 trial will assess the health benefits and costs of a ”patient navigator” program for families and patients at highest risk, including families of lower literacy, low socioeconomic status and families from non-English speaking backgrounds.

The patient navigators are trained non-medical personnel who assist patients throughout their illness, helping families to better understand their diagnoses, treatment options, available resources, and to guide them through the very complex medical system.   

“The assistance provided to families can come in many forms and depends on each family’s individual needs.  Navigators might help patients break down barriers to health access by providing transport options or access to translation services. In other cases it might be a matter of helping families keep track of appointments that often take place in different clinics due to the complex nature of their child’s condition,” she said.

The trial may also provide insights into whether or not interventions such as patient navigators could improve access to health care and overall health, including quality of life for children with CKD.

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