Parents'/Caregivers' perspectives on weight management in children with cystic fibrosis receiving modulator therapy: A cross‐sectional survey

BACKGROUND: Modulator therapy in children with cystic fibrosis (cwCF) has improved lung function and digestive health, prompting changes in nutrition management strategies for many cwCF. The purpose of this study is to describe parents'/caregivers' perspectives on weight management in cwCF with the introduction of cystic fibrosis transmembrane conductance regulator modulator therapies (CFTRm). METHODS: Researchers developed a cross-sectional survey regarding parents'/caregivers' perceptions of weight management in cwCF. Content validity was established through four expert reviews and two cognitive interviews. A link to the survey was posted on two private Facebook pages with members who attended a CF clinic in the western United States and distributed to families attending a CF clinic in the southeastern United States. Survey responses were analyzed with descriptive statistics. RESULTS: Forty-nine parents/caregivers represented data for 60 cwCF. Sixty cwCF were prescribed CFTRm, and 46 (76.6%) had taken CFTRm for more than a year. Forty-nine (86%) parents/caregivers agreed with clinicians on the weight classification of their cwCF. Many (52%) cwCF who received CFTRm for more than a year made changes to their diet. Parents/caregivers reported a mean score of 8.31 ± 2.47, with 10 being very comfortable talking with the clinic about their child's weight. CONCLUSION: Parents'/caregivers' perceptions of weight management in their cwCF varied. Nutrition strategy changes ranged from adding additional calories to decreasing calories and discontinuing supplemental nutrition after starting CFTRm. Individualized nutrition therapy is required in the era of CFTRm. Parents'/caregivers' concerns and perspectives about weight and diet are vital to assessing weight management.