Background: Cystic Fibrosis Foundation guidelines recommend human milk (HM) as the ideal source of nutrition for children with CF (cwCF). Despite known pulmonary and nutritional benefits, fewer cwCF ever receive HM compared to the general population. Early nutrition choices are preference-sensitive, yet little is known about the factors that impede or sustain HM feeding among parents of cwCF. Objectives: Explore perceptions and experiences of mothers of cwCF who initiated HM feeding. Methods: Mothers of cwCF aged ≤10 years completed audio-taped, semi-structured interviews describing their experiences with HM feeding. Interviews were transcribed and two researchers independently coded the transcripts and conducted content and thematic analysis using an inductive approach. Results: Participants included 28 mothers who initiated HM feeding. Major themes included 1) the impact of a CF diagnosis on HM feeding plans 2) CF-specific challenges to HM feeding 3) mixed perceptions of the CF team’s support for HM feeding and of the role of formula in CF nutritional care and 4) the benefit of lactation consultants as part of the CF care team. Conclusion: Many parents prioritize HM for their cwCF given the well-established health benefits. However, CF-specific barriers to HM feeding are common and nutritional challenges necessitating fortification add additional barriers to sustained HM feeding efforts. While HM may improve long-term pulmonary outcomes, our findings demonstrate the need for personalized support for mothers desiring to HM feed to facilitate shared decision-making around options to optimize early nutritional status among cwCF.

Introduction: There is evidence for increased risk of eating disorders in individuals with diet-treated chronic illnesses, however, data in patients with Cystic Fibrosis (CF) is less clear. No studies have evaluated avoidant/restrictive food intake disorder (ARFID) in the CF population. We investigated the prevalence of disordered eating, including ARFID, in adolescents and young adults with CF. Methods: Patients with CF aged 14-35 years were recruited to complete three validated surveys: (1)Eating Disorder Examination Questionnaire (EDE-Q), (2)Nine-Item Avoidant/Restrictive Food Intake Disorder Scale (NIAS), and (3)Cystic Fibrosis Questionnaire-Revised (CFQ-R). Univariate linear regression analysis identified baseline risk factors associated with these survey scores. Variables with univariate p<0.20 were considered for inclusion in a multivariable linear regression model. Backwards stepwise linear regression was used to identify the final model. Results: A total of 52 patients enrolled. The prevalence of eating disorder measured on the EDE-Q was 9.6%, and on the NIAS was 13.5%. The CFQ-R eating and weight subscales were associated with scores on the EDE-Q, and CFQ-R eating subscale and being dF508 homozygous were correlated with the NIAS total score. Discussion: A clinically significant number of participants screened positive for disordered eating on the EDE-Q and NIAS. Scores on the eating and weight scales of the CFQ-R were associated with the scores on these surveys. Further work is needed to better understand the optimal way to use such tools to screen and treat for eating disorders in individuals with CF.