The randomized controlled trial (NAVKIDS2) of a patient navigator program created for children with chronic kidney disease

Germaine Wong; Chandana Guha; Kylie-Ann Mallitt; Anita van Zwieten; Rabia Khalid; Anna Francis; Allison Jaure; Siah Kim; Armando Teixeira-Pinto; Martha Aquino; Amelie Bernier-Jean; David W Johnson; Deirdre Hahn; Donna Reidlinger; Elizabeth G Ryan; Fiona Mackie; Hugh McCarthy; Julie Varghese; Charani Kiriwandeniya; Kirsten Howard; Nicholas Larkins; Luke Macauley; Amanda Walker; Martin Howell; Patrina Caldwell; Reginald Woodleigh; Shilpa Jesudason; Simon Carter; Sean Kennedy; Stephen Alexander; Steve McTaggart; Jonathan C Craig; Carmel M Hawley; NAVKIDS(2) trial steering committee

doi:10.1016/j.kint.2024.05.031

The randomized controlled trial (NAVKIDS²) of a patient navigator program created for children with chronic kidney disease

Kidney Int. 2024 Oct;106(4):736-748. doi: 10.1016/j.kint.2024.05.031. Epub 2024 Jul 1.

Authors

Germaine Wong¹, Chandana Guha², Kylie-Ann Mallitt³, Anita van Zwieten², Rabia Khalid⁴, Anna Francis⁵, Allison Jaure², Siah Kim², Armando Teixeira-Pinto², Martha Aquino⁶, Amelie Bernier-Jean⁷, David W Johnson⁸, Deirdre Hahn⁹, Donna Reidlinger¹⁰, Elizabeth G Ryan¹¹, Fiona Mackie¹², Hugh McCarthy⁹, Julie Varghese⁶, Charani Kiriwandeniya⁶, Kirsten Howard¹³, Nicholas Larkins¹⁴, Luke Macauley¹⁵, Amanda Walker¹⁶, Martin Howell¹⁷, Patrina Caldwell¹⁸, Reginald Woodleigh¹⁹, Shilpa Jesudason²⁰, Simon Carter¹⁶, Sean Kennedy²¹, Stephen Alexander⁹, Steve McTaggart⁵, Jonathan C Craig²², Carmel M Hawley²³; NAVKIDS(2) trial steering committee

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia; Department of Renal Medicine, Westmead Hospital, Sydney, New South Wales, Australia. Electronic address: [email protected].
² Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
³ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia; School of Clinical Medicine, Faculty of Medicine & Health, University of New South Wales, Sydney, New South Wales, Australia.
⁴ The University of Sydney, Children's Hospital Westmead Clinical School, Westmead, New South Wales, Australia; Charles Perkins Centre, The University of Sydney, New South Wales, Australia.
⁵ Child and Adolescent Renal Services, Children's Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia.
⁶ Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia.
⁷ CIUSSS du Nord-de-l'Île de Montréal, University of Montréal, Montreal, Canada.
⁸ Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia; Department of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Queensland, Australia; Australasian Kidney Trials Network, Translational Research Institute, Brisbane, Queensland, Australia.
⁹ Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia; Discipline of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, New South Wales, Australia.
¹⁰ Australasian Kidney Trials Network, Translational Research Institute, Brisbane, Queensland, Australia; Department of Medicine, The University of Queensland, Brisbane, Queensland, Australia.
¹¹ QCIF Facility for Advanced Bioinformatics, Institute for Molecular Bioscience, The University of Queensland, Brisbane, Australia; School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
¹² Department of Nephrology, Sydney Children's Hospital, Randwick, Sydney, New South Wales, Australia.
¹³ Menzies Centre for Health Policy, Sydney, New South Wales, Australia; Economics and Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
¹⁴ Department of Nephrology, Perth Children's Hospital, Perth, Western Australia, Australia; School of Medicine, University of Western Australia, Perth, Western Australia, Australia.
¹⁵ Kidney Health Australia, Australia.
¹⁶ Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
¹⁷ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia; Menzies Centre for Health Policy, Sydney, New South Wales, Australia; Economics and Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
¹⁸ Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
¹⁹ Prostate and Breast Cancer Foundation (CanCare), Sydney, New South Wales, Australia.
²⁰ Central Northern Adelaide Renal and Transplantation Service (CNARTS), Royal Adelaide Hospital, Adelaide, South Australia, Australia.
²¹ School of Clinical Medicine, Faculty of Medicine & Health, University of New South Wales, Sydney, New South Wales, Australia; Department of Nephrology, Sydney Children's Hospital, Randwick, Sydney, New South Wales, Australia.
²² College of Medicine and Public Health, Flinders University, Adelaide, South Australia.
²³ Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia; Department of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Queensland, Australia; Australasian Kidney Trials Network, Translational Research Institute, Brisbane, Queensland, Australia; Department of Medicine, The University of Queensland, Brisbane, Queensland, Australia.

PMID: 38959996
DOI: 10.1016/j.kint.2024.05.031

Abstract

Patient navigators enable adult patients to circumnavigate complex health systems, improving access to health care and outcomes. Here, we aimed to evaluate the effects of a patient navigation program in children with chronic kidney disease (CKD). In this multi-center, randomized controlled trial, we randomly assigned children (aged 0-16 years) with CKD stages 1-5 (including children on dialysis or with kidney transplants), from low socioeconomic status backgrounds, and/or residing in remote areas, to receive patient navigation at randomization (immediate) or at six months (waitlist). The primary outcome was self-rated health (SRH) of participating children at six months, using intention to treat analysis. Secondary outcomes included caregivers' SRH and satisfaction with health care, children's quality of life, hospitalizations, and missed school days. Repeated measures of the primary outcome from baseline to six months were analyzed using cumulative logit mixed effects models. Semi-structured interviews were thematically evaluated. Of 398 screened children, 162 were randomized (80 immediate and 82 waitlist); mean age (standard deviation) of 8.8 (4.8) years with 64.8% male. SRH was not significantly different between the immediate and wait-listed groups at six months. There were also no differences across all secondary outcomes between the two groups. Caregivers' perspectives were reflected in seven themes: easing mental strain, facilitating care coordination, strengthening capacity to provide care, reinforcing care collaborations, alleviating family tensions, inability to build rapport and unnecessary support. Thus, in children with CKD, self-rated health may not improve in response to a navigator program, but caregivers gained skills related to providing and accessing care.

Keywords: chronic kidney disease; dialysis; kidney transplantation; patient navigation; pediatric nephrology.

Publication types

Randomized Controlled Trial
Multicenter Study

MeSH terms

Adolescent
Caregivers / psychology
Child
Child, Preschool
Female
Health Services Accessibility / organization & administration
Humans
Infant
Infant, Newborn
Kidney Transplantation
Male
Patient Navigation* / organization & administration
Patient Satisfaction
Quality of Life*
Renal Dialysis
Renal Insufficiency, Chronic* / psychology
Renal Insufficiency, Chronic* / therapy