Study: School Specialist Could Help CF Children at Educational Risk

Over half of students with CF at risk, largely due to school absences

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

Share this article:

Share article via email
A row of children, including one using a wheelchair, join hands.

Adding a school specialist to cystic fibrosis (CF) care teams could help identify educational risk factors — and provide interventions — to promote school success for children with CF, according to a new study.

That study, by specialists at a CF center in Ohio, found that more than half of children with the genetic disease were at a moderate or high educational risk. Such risk seemed to be driven largely by school absences, hospitalizations, mental health difficulties, and family concerns due to CF.

“Data from our experience is valuable for planning and implementing provider programs that are more responsive to student, family, and school needs across a spectrum of challenges to school success,” the researchers wrote, noting that “increased educational risk was associated with mental as well as physical health concerns.”

Recommended Reading
self-screening tool | Cystic Fibrosis News Today | illustration of researcher taking patient information

Life Expectancy of CF Children Surpasses Age 50 in UK for 1st Time

Titled “Longitudinal Assessment of Educational Risk for K-12 Students with Cystic Fibrosis,” the study was published in The Journal of Pediatrics.

While CF does not directly influence learning ability and cognitive skills, impacts of the chronic disease — including symptom exacerbations, daily care needs, or mood disorders — can lead to distractions during class or absences from school. Such disruptions can have a negative impact on a child’s education.

Promoting school success

These issues can be further exacerbated in school settings where there isn’t enough understanding of the disease. Often, educational support for the child is lacking, or communication between families, doctors and schools isn’t adequate.

“Efforts to promote optimal educational success are of particular importance as medical advances are leading to better health and extended lifespan,” the researchers wrote.

Moreover, the team noted, “as more children with CF move into adulthood, their ability to support independent living will depend in considerable part on K-12 educational experiences.”

In the study, researchers from the Cincinnati Children’s Hospital Medical Center (CCHMC) and the University of Cincinnati College of Medicine aimed to assess the utility of adding a school service specialist as a full-time member of the hospital’s CF center.

A specialist was added to the team in 2017, and now offers educational risk screenings for children, while also providing tailored interventions. This includes direct consultations with families and schools.

The analysis involved 126 school-aged children, ages 5–18, who were enrolled in K–12 education — primary or secondary school — and whose family utilized this specialist at any time from 2017 to 2020.

Overall, 82% of school children seen at CCHMC’s CF center were represented in the study, the majority of whom attended public school. Considering body weight, lung function, CF-related diabetes, and use of a feeding tube, this group of children was “somewhat healthier yet similar compared with the school age CCHMC CF center population during the study years,” the researchers wrote.

Still, almost half of students had missed at least 16 days of school each year.

The school specialist had an average of 521 encounters per year, which were usually with families (69%), but sometimes with school personnel (31%). Topics could range from documentation of medical records to developing educational plans.

Brief school needs inventories (BSNI) were performed during some of these encounters. The BSNI is an educational risk assessment that takes into account grades, attendance, academic performance, school accommodations, emotional status, and parent readiness for advocacy to determine a child’s risk of educational difficulties.

Based on these assessments, half of all children fell into a moderate risk tier, and almost a quarter were considered high risk, meaning they faced more barriers to school success.

Recommended Reading
An illustration, titled

Children in Real-world Setting Have Different Orkambi Response Profiles

Ultimately, family concern for a child’s school performance was the strongest predictor of educational risk, increasing the odds by more than 21 times. This was followed by family concerns about a potential need to repeat a school year.

Role of educational specialist

School absences (at least 16 per year), number of hospitalizations, days in the hospital, and number of mental health visits were significantly linked to educational risk. Number of hospitalizations was the only of these associations that increased with advancing grade level.

The researchers found that school absences, mental health, and ability to advocate for their child’s needs had significant influence on parents’ concern for their student’s performance.

Also, perceived ability for families to advocate for their child’s needs were lower for families who had public health insurance, concerns about their child’s school performance, and 16 or more absences.

The school specialist was used most often when families had unmet needs for advocacy and more concerns about performance, or when their child had more absences, hospitalizations, or worse lung function.

“Our identification of potential barriers to successful school experiences suggests that assessment and support may be prioritized to students who miss excessive numbers of school days, have the most medical problems and mental health concerns, or qualify for public insurance,” the researchers wrote.

An additional goal should be to “enhance family ability to independently advocate more effectively for needs in the school setting which may mitigate risk and severity of needs over time,” the team added.

Overall, the study’s findings support the use of a school specialist to assess and address educational risk in children with CF.

The team noted that “it is not yet documented how the support of the School Specialist interventions impact longer term outcomes,” adding that further investigation is needed.

Ultimately, the researchers hope that outcomes from interventions like this will “promote further opportunities to embed school support expertise into chronic care programs.”

A Conversation With Rare Disease Advocates

Your CF Community

Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.