More resources are needed to address education concerns in CF

Researchers surveyed 67 pediatric care teams in the CFF's Care Center Network

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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More resources are needed to help identify and address education-related concerns among pediatric cystic fibrosis (CF) patients, a recent survey of care teams at CF centers in the U.S. shows.

While the teams reported they were often involved in some education support — such as filling out forms or communicating with schools — most programs lacked formal assessments for monitoring educational concerns in their patients or staff dedicated to educational support.

“CF care teams often lack comprehensive resources to identify and address education-related concerns,” the researchers wrote, noting systematically implementing educational support during childhood, “will foster continued independence and well-being in adulthood.” The study, “Education-related needs for children with cystic fibrosis: Perspectives of US pediatric care teams,” was published in Pediatric Pulmonology.

Education in early life is key to enable CF patients to maintain employment and be financially independent in adulthood, factors that are closely linked to quality of life.

Still, CF Foundation (CFF) registry data indicate about a quarter of patients don’t earn a high school degree or equivalent by age 19. That’s a significant difference from the general population in public schools, where degree or certificate rates total about 87%, according to the authors.

As graduation rates in the U.S. rise, they are declining among people with CF, which can be a substantial hurdle to independent living later.

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Evaluating CF care center needs

Educational barriers, including declines in physical or mental health and school absences, mean children with CF may need individualized educational support.

Many families rely on CF center care teams to address education-related concerns, but there hasn’t been enough research about what these educational needs are, how care centers offer support, and what resources they need.

“Systematically evaluating the education-related needs of children with CF and their families will ensure that CF centers have an in-depth understanding of current educational needs and are well-poised to address them,” wrote a team of researchers who surveyed pediatric care teams in the CFF’s Care Center Network about patients’ educational needs.

A total of 67 programs responded, representing about half of the pediatric CF centers in the U.S. The surveys were mostly completed by social workers.

CF team members reported that most of their patients (94%) attended school in person. The most requested school accommodations were related to carrying medications (75%), permission to leave the classroom due to gastrointestinal issues (54%), and permission to carry a water bottle (51%).

Most care centers (80%) said they address some type of education-related need. These issues are mostly handled by social workers, although nurses, dietitians, physicians, and psychologists may also be involved.

The services commonly provided at care centers included completing school forms (99%), coaching families on communicating with schools (96%), communicating with schools directly (90%), and helping to develop educational plans (76%).

Still, only 4% of respondents, or three care centers, had a dedicated educator embedded in their program. Formal educational support programs within the center were reported by 19%, with about a quarter saying they had no available education supportat their center.

What resources do CF care centers need to support education?

A number of different resources were identified that were needed to address patient education-related issues, but weren’t being made available.

The one most commonly reported was a need for standardized informational materials about CF to distribute to families and schools (94%). Other needs included better staff education about school concerns and how to address them in the care center (91%), and a need for more staff with expertise in education (68%).

Helpful resources would include templated information documents, standardized assessment tools for monitoring school experiences, more peer support groups for patients and families, and more educational resources.

The findings underscore the significant education-related needs for patients and the resources needed by CF care centers to help patients and families meet them.

“Establishing and implementing best practices in educational support across CF centers is a timely goal,” the researchers wrote, noting these may include ongoing monitoring of education-related metrics, assessing the value of including education specialists on care teams, and developing electronic resource hubs for care centers. “Notably, the survey was not designed for students and families to participate. Future data gathering should capture child and family perspectives directly.”