Recommendations Issued About Managing Chronic Disease in Children

Joana Carvalho, PhD avatar

by Joana Carvalho, PhD |

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A panel of experts has released a series of recommendations for carers of children with chronic conditions, such as cystic fibrosis (CF), asthma, congenital heart disease, and diabetes, about how to manage these conditions from home.

The new guidelines come at a much-needed time, as they may provide carers with tools needed to manage their child’s condition, while ensuring their safety during the current COVID-19 pandemic. Some of the recommendations include the adoption of telehealth and home-monitoring devices, and the scheduling of routine home visits with certified healthcare professionals.

Recommendations were described in the study, “Developmentally appropriate supported self-management for children and young people with chronic conditions: A consensus,” published in the journal Patient Education and Counseling.

Chronic health conditions — those lasting for at least six months — are estimated to affect 15–40% of children and young adults worldwide up to the age of 20. The term encompasses many disorders, each with its own unique features. However, all of them have something in common: the need to be monitored and managed on a daily basis.

However, strained hospital services and concerns about the spread of COVID-19 have pushed many children and young adults with chronic health conditions away from hospitals, and limited their interactions with healthcare professionals. This has created the need to establish new strategies that will allow those caring for these children to self-manage their condition in the safety of their home.

“From what we are seeing in Australia and overseas, significantly fewer children are presenting to hospitals or making contact with health professionals due to concerns about COVID-19,” Nicole Saxby, PhD, researcher at Flinders University, Adelaide, Australia, and lead author of the study, said in a press release.

“There is a great need to empower children and their families to actively manage their own health, particularly if they’re not keeping up their appointments. During periods of isolation, it is very important to watch for any early signs of a child’s health starting to deteriorate. Children and young people cannot self-manage their health themselves. They will need different levels of support from their caregivers and health professionals,” Saxby added.

In an attempt to create a set of self-management recommendations for children and young adults with chronic disorders, Saxby and her colleagues invited clinical academics with several backgrounds from different countries to participate in three rounds of surveys.

During the first round, experts were asked to answer open-ended and multiple-choice questions, so that their overall opinion on self-management strategies could be gathered. In the second round, they were asked to rate their agreement with each other’s opinions, using a 7-point Likert scale. Statements not reaching a consensus (defined as an opinion shared by at least 70% of the experts) in the second round were re-assessed in the final round.

A total of 16 experts participated in the study. From these, 12 completed the first survey round, 14 the second, and 12 the third.

Experts reached a consensus on 90 self-management statements that covered several domains of self-management, including knowledge, involvement, lifestyle, and support.

Some of the recommendations include the adoption of new technologies that allow pediatric health services to easily communicate and educate children and their families from the safety of their homes. These include the use of home-monitoring medical devices that allow digital health assessments, frequent email communication, and scheduling of home visits with certified healthcare professionals.

“As well, cystic fibrosis centres across Australia are looking at deploying devices that patients can use in their own homes to monitor lung function trends, which clinicians can review via a confidential portal,” Saxby said.

Saxby also added that during this period of social isolation, it is important that children with chronic conditions keep in touch with their peers using social media platforms. “Social media networks such as Facebook groups is just one way to keep in touch,” Saxby said.

Sharon Lawn, professor at Flinders University and senior author of the study, also noted the importance of keeping in mind that self-management strategies for adults may not be suited for children with chronic diseases and their families.

“Children are not just little adults,” Lawn said. “These findings offer health services and professionals fresh insights into the transitions these children and their families must navigate as part of supported self-management.”