Better Health Literacy Helps CKD Patients

Living with Chronic Kidney Disease (CKD) is challenging, and can be even more so for those people from Culturally and Linguistically Diverse (CALD) backgrounds. Maintaining the correct diet, fluid intake and exercise to manage the disease can be particularly difficult in the face of cultural expectations.

The SUCCESS project aims to support informed choice and shared decision-making in the planning and delivery of care pathways among patients with CKD by increasing their health literacy.

In Phase II of the project, a purpose-developed mobile phone app provided more than 100 trial participants at hospitals across Sydney Health Partners with information about foods, drinks, medications and exercise. 

The CKD patients - and their carers - used the app to complete health literacy training modules. They could also make lists of questions for doctors and nurses, empowering them to exercise their choices and select options that they prefer.

Chief investigator and University of Sydney Professor of Clinical Epidemiology, Angela Webster, said the trial resulted in a significant improvement in the health literacy scores of the participants.

“We observed a significant increase in the confidence of CKD patients from CALD backgrounds to read and understand food and medicine labels - and an increase in their confidence to talk with their healthcare team about what matters to them,” said Professor Webster, who is a Senior Staff Specialist in Renal Medicine and Transplantation at Westmead Hospital.

“Preliminary findings suggested some improvement in quality of life through using the SUCCESS app because patients realised they have choice and agency in health care decisions involving them where previously they did not perceive choice.”

During the trial, feedback from users provided a few surprises - and the lessons learnt were incorporated in a second version of the app.

Project Manager Jennifer Isautier says refining functions in the app was an iterative process. 

“We really took the time to listen to participants to understand what features worked well and what could be improved.” 

“The trial made dialysis clinic staff aware of the different health literacy needs between patients. They were surprised by how much the app helped to improve those information exchanges.”

Participants told researchers they preferred the information to be provided via videos rather than text. As a result Version 2 of the SUCCESS app will now include multiple videos and a text-to-speech function so that written text within the app can be heard rather than read.

“Several patients also expressed a strong desire for an additional section on support for emotional wellbeing for themselves and for carers of people living with CKD,” said Ms Isautier. “They like hearing other people’s stories – for example, short videos from patients about their experience living with CKD.“

The project has now received additional funding from the NSW Government for a randomised control trial of Version 2 across several hospitals. The grant will also enable the translation of the app into Arabic, simple Chinese, Vietnamese and Tagalog. 

While the SUCCESS project grows in scale and scope, Professor Webster says one of its most important achievements to date has been identifying the emotional needs of patients with chronic kidney disease from CALD backgrounds.

“I think it’s become clear that something these patients find difficult is the isolation and loneliness of living with a chronic disease in a CALD community. One of the biggest benefits of the app has been to show them that other people with CKD are going through similar things.”