Addressing the Clinical Challenges of Caring for Children with Cystic Fibrosis and Autism Spectrum DisorderAddressing the Clinical Challenges of Caring for Children with Cystic Fibrosis and Autism Spectrum Disorder https://pediatricsnationwide.org/wp-content/themes/corpus/images/empty/thumbnail.jpg 150 150 JoAnna Pendergrass, DVM JoAnna Pendergrass, DVM https://pediatricsnationwide.org/wp-content/uploads/2021/03/pendergrass_01.jpg
- March 06, 2023
- JoAnna Pendergrass, DVM
A recent study sheds light on the unique clinical challenges faced by children with cystic fibrosis and autism spectrum disorder and offers potential solutions to these challenges.
Cystic fibrosis (CF) and autism spectrum disorder (ASD) pose significant clinical and emotional burdens to patients and their families. A concurrent CF-ASD diagnosis presents even greater challenges, but research on these challenges has been limited.
It is unknown how many children have CF-ASD.
“Cystic fibrosis is a complex disease that requires numerous daily interventions involving patients, families and providers,” says Grace Paul, MD, pediatric pulmonologist in the Division of Pulmonary and Sleep Medicine at Nationwide Children’s Hospital and associate professor of Pediatrics at The Ohio State University College of Medicine. “Adding ASD to the diagnosis adds significant stress to a patient’s family.”
In the first study to do so, Dr. Paul and her research team identified and provided recommendations for the challenges in management associated with CF-ASD. Their findings were published in Pediatric Pulmonology.
“We aim to promote awareness of the struggles inherent in caring for children with CF-ASD, explore practical interventions to help improve clinical outcomes, encourage parental advocacy and reduce health care disparities in this special population,” they wrote.
The researchers conducted a three-part, single-center qualitative study of 12 pediatric patients with CF-ASD who received care at Nationwide Children’s between January 2018 and June 2021. The three parts of the study were as follows:
- Retrospective chart review
- CF care team surveys
- Caregiver interviews
Care team members included physicians, nurses, dietitians, social workers, child-life specialists, and respiratory therapists. For the survey, they were asked to identify clinical management barriers and suggest recommendations to address them.
Kimberly Pasley, PsyD, mental health coordinator and the study’s lead author, conducted the caregiver interviews. Caregivers reviewed the care team’s recommendations, which were then ranked according to the percentage of caregivers agreeing with each recommendation. The caregivers also provided suggestions and shared their experiences.
“This was a holistic paper that involved more than just doctors and patients,” says Dr. Paul.
Survey results indicated four major themes of barriers in clinical management to CF-ASD care (inpatient and outpatient):
- Adapting to a new routine
- Procedural intolerance
- Difficulties with measuring and meeting CF health care goals
- Caregiver involvement in coping and treatment planning
Care team members provided numerous recommendations for each theme. For example, to address procedural intolerance, they recommended creating a patient-specific coping plan involving input from psychologists, child-life specialists, mental health coordinators and the parents.
To help caregivers cope with caring for a child with CF-ASD, care team members recommended that social workers and mental health coordinators direct families toward many support resources.
Recommendations receiving the most agreement from caregivers included a consistent CF care team and telehealth options.
Dr. Paul believes the major themes of clinical management barriers could apply to other children’s care centers. “The study’s findings can help other hospitals identify patients with CF-ASD and consider different strategies for their care,” she says.
To standardize the recommendations reported in this study, Dr. Paul suggests conducting a multi-center study involving more pediatric patients with CF-ASD.
She also emphasizes the importance of advocacy.
“Patients with CF-ASD comprise a very vulnerable population. We want to advocate for them, provide them with sensitive care and let them know we understand what they’re going through,” says Dr. Paul.
Pasley K, Krivchenia K, Dell ML, McCoy KS, Paul GR. Clinical management of pediatric patients with cystic fibrosis and autism spectrum disorder. Pediatric Pulmonology. 2023 Jan 6. doi: 10.1002/ppul.26311. Online ahead of print.
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