Science Show & Tell: How parents’ health literacy affects health outcomes for children with chronic kidney disease

How well a child responds to medical treatment is influenced by a number of factors, including how well their parents understand how to care for them at home. This is especially true for kids with chronic conditions, like nephrotic syndrome, the most common kidney disease in children. For these kids, the severity of their condition can actually be dictated by the success of the initial treatment after diagnosis.

In a new study led by The Hospital for Sick Children (SickKids), a Toronto research team assessed how parents’ health literacy, or ability to understand medical information and make decisions about care, may affect health outcomes for children with nephrotic syndrome.

The research, published in the Feb. 17 online edition of the journal Pediatrics, found that lower parental health literacy — specifically reading comprehension — is associated with higher relapse rates and lower rates of complete remission.

In this Science Show & Tell, Dr. Rulan Parekh, the study’s principal investigator and Associate Chief of Clinical Research, Staff Physician in Nephrology and Senior Scientist at SickKids, explains how understanding the impact of parents’ health literacy on children’s health can help shape future parent education initiatives, and ultimately, improve outcomes for children with a variety of chronic conditions.

Why is it important to study the association between parental health literacy and paediatric health outcomes, particularly in the context of children with nephrotic syndrome?

There is a lot of variability with nephrotic syndrome in that children may never relapse or they may relapse a lot. We’re trying to understand if there are biological, environmental or potential social reasons that may account for this variability. Our study was one way to assess if parental health literacy may impact the first few years of having nephrotic syndrome, especially after their first course of treatment.

We found that if the parent had slightly lower health literacy, this impacted the relapse rate and the child would relapse sooner after the first course of therapy. This is important because there may be issues in terms of taking the medication on a regular basis, and following a very complicated schedule of tapering the dose over time. If the parents are not able to completely understand all of the instructions and medication schedules, then mistakes could naturally be made, which could lead to the child experiencing a relapse.

There are very few studies that routinely assess parents’ health literacy and its impact on children’s health outcomes. Nephrotic syndrome gives some insight into other chronic diseases, such as Type 1 diabetes, asthma, and others where there’s a lot of home management and assessment needed by parents. Understanding parental health literacy in these chronic conditions may potentially have a large impact on health outcomes for those kids.

Why is the initial period following diagnosis so critical in determining health outcomes for kids with nephrotic syndrome?

It has been shown that the first course of therapy — the dose and the cumulative dose over time — has the greatest effect in minimizing repeated relapses, so we know that this is the most vital period to treat the disease.

When children are very sick or experience complications, parents become more health literate over time. However, health literacy probably has its greatest impact when the child is first diagnosed and home management begins.

Why wasn’t education level a good indicator of health literacy?

We have a diverse and highly educated population in Toronto; however, education doesn’t always correspond to health literacy. There are lots of items that require understanding in health care. You have to understand the health-care system, how it works, how to monitor symptoms of the disease and also understand the family’s role in adherence to a medical plan. These are all important parts when receiving care. These factors, in addition to having trust in the health-care system, and coping with the stress of a child who suddenly gets sick, can all make true comprehension of instructions much more difficult.

There’s a very comprehensive battery of tests to evaluate health literacy. In this study we assessed reading comprehension and numeracy, which are only two of the components of health literacy.

How might these results change clinical practice?

As clinicians, we recognize that communication is the most important facet of care. We are trying to figure out how to determine if parents really understand the treatment plan for their child. Currently, the nurses run education sessions for families, where they review nephrotic syndrome, and teach them what they’ll be doing at home, how to taper medications and watch for signs and symptoms of a relapse.

What we’re looking to find out is, what are the other things we can do to improve listening and comprehension? Do we need multiple modalities, like videos or mobile apps families can access at home in case they forget what was discussed in the hospital? Our next step is to conduct focus groups to determine which new tools we need to develop to reinforce different messages in different ways. Then, we hope to create these educational tools and assess whether they improve outcomes.

Parekh is also Professor of Pediatrics and Medicine, Faculty of Medicine and Dalla Lana School of Public Health, and Health Policy and Management Evaluation at the University of Toronto.

This study was supported by the PSI Foundation and SickKids Foundation.

This paper is an example of how SickKids is contributing to making Ontario Healthier, Wealthier and Smarter.

For more information, please contact:

Suzanne Gold
The Hospital for Sick Children
416-813-7654 ext. 202059
suzanne.gold@sickkids.ca

Matet Nebres
The Hospital for Sick Children
416-813-6380
matet.nebres@sickkids.ca