Giving adolescents with cystic fibrosis a voice: Predicting cystic fibrosis nutritional adherence from their decision-making involvement

Jennifer Kelleher; Kristine Durkin; David A Fedele; Kathryn Moffett; Stephanie S Filigno; Courtney Lynn; Robin S Everhart; Lori J Stark; Christina L Duncan

doi:10.1093/jpepsy/jsae034

Giving adolescents with cystic fibrosis a voice: Predicting cystic fibrosis nutritional adherence from their decision-making involvement

J Pediatr Psychol. 2024 May 16:jsae034. doi: 10.1093/jpepsy/jsae034. Online ahead of print.

Authors

Jennifer Kelleher¹, Kristine Durkin¹, David A Fedele², Kathryn Moffett³, Stephanie S Filigno^{4

5

6}, Courtney Lynn⁷, Robin S Everhart⁸, Lori J Stark^{4

6}, Christina L Duncan^{1

3}

Affiliations

¹ Department of Psychology, West Virginia University, Morgantown, WV, United States.
² Department of Clinical & Health Psychology, University of Florida, Gainesville, FL, United States.
³ Department of Pediatrics, West Virginia University Health Sciences Center, Morgantown, WV, United States.
⁴ Division of Behavioral Medicine & Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States.
⁵ Division of Pulmonary Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States.
⁶ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, United States.
⁷ Pediatric Mental Health Institute, Children's Hospital Colorado, Aurora, CO, United States.
⁸ Department of Psychology, Virginia Commonwealth University, Richmond, VA, United States.

PMID: 38752579
DOI: 10.1093/jpepsy/jsae034

Abstract

Objective: Suboptimal nutritional adherence in adolescents with cystic fibrosis (awCF) has been associated with lower lung function. AwCF often have more independence in dietary decisions than younger children, yet little research has examined how adolescent decision-making relates to nutritional adherence. This study explored whether components of adolescent decision-making involvement facilitate enzyme and caloric adherence in awCF.

Methods: 37 families participated and completed study procedures. AwCF and caregivers completed electronic surveys, including the Decision-Making Involvement Scale (DMIS). The DMIS evaluated awCF behaviors during nutrition-related decision-making/discussions with caregivers using DMIS subscales: Child Seek (asking for help/advice from caregivers), Child Express (awCF stating opinions) and Joint/Options (awCF participating in joint decision-making or caregiver providing options). AwCF completed 2, 24-hr diet recalls via videoconferencing/phone to estimate adherence. Chart reviews collected medical information. DMIS subscales were regressed onto enzyme and caloric adherence.

Results: 43% of awCF met calorie recommendations; 48.6% took all enzymes as prescribed. Caloric adherence was positively correlated with adolescent- and parent-reported Child Seek (r = 0.53; r = 0.36) and adolescent-reported Joint/Options (r = 0.41). Per adolescent-report, the caloric adherence regression model was significant, with Child Seek contributing unique variance in caloric adherence (β = .62, p = .03). Parent-reported adolescent-decision-making involvement significantly predicted caloric adherence, but none of the subscales contributed unique variance. No other regressions were significant.

Conclusions: When awCF participated in nutrition-related discussions with a caregiver, especially with questions, caloric adherence was better. Future research should examine whether family factors influence these results. AwCF are encouraged to ask questions in nutrition discussions.

Keywords: adherence/self-management; adolescents; cystic fibrosis; decision-making involvement; nutrition.

Abstract

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