"I eat chocolate milk for dinner because we just have nothing in our fridge": The invisible burden and dire consequences of food insecurity for people with cystic fibrosis in the United States.

BACKGROUND: One-third of people with cystic fibrosis (pwCF) are food insecure, with profound negative implications for their health. This qualitative study explored lived experiences with food insecurity among pwCF or their caregivers and summarized their perspectives on food insecurity screening in the cystic fibrosis (CF) programs where they receive care. METHODS: Semi-structured qualitative interviews were conducted with two groups: (1) adults with CF and (2) parents or caregivers of children with CF. PwCF or their caregivers with previously documented food insecurity were referred for participation by pediatric and adult CF programs across the United States. Interviews were recorded and transcribed, and data were coded and analyzed by two independent coders using a content-analysis approach with a constant comparative method to generate themes. RESULTS: A total of 26 participants from 22 CF programs were interviewed. The sample included 17 adults with CF and nine parents of children with CF. Participants were predominantly White (88%) and female (92%). Five overarching themes emerged: (1) food insecurity among CF patients and their families is onerous, (2) financial constraints imposed by the CF disease contribute to food insecurity, (3) federal and state programs provide limited food assistance, and other support is minimal, (4) shame and stigma engulf conversations around food insecurity with CF care teams, and (5) food insecurity screening in clinical settings is critical. CONCLUSIONS: Food insecurity among pwCF is invisible, but its consequences are dire. Assistance is limited, screening is inconsistent, and stigma is widespread. There is an urgent need to normalize food insecurity screening, standardize the screening process, and expand food assistance programs for pwCF.

Food insecurity screening and local food access: Contributions to nutritional outcomes among children and adults with cystic fibrosis in the United States.

BACKGROUND: As the nutritional status of people with CF (PwCF) is associated with their socioeconomic status, it is important to understand factors related to food security and food access that play a role in the nutritional outcomes of this population. We assessed the contributions of CF program-level food insecurity screening practices and area-level food access for nutritional outcomes among PwCF. METHODS: We conducted a cross-sectional analysis of 2019 data from the U.S. CF Patient Registry (CFFPR), linked to survey data on CF program-level food insecurity screening and 2019 patient zip code-level food access. Pediatric and adult populations were analyzed separately. Nutritional outcomes were assessed with annualized BMI percentiles (CDC charts) for children and BMI (kg/m2) for adults, with underweight status defined as BMIp <10% for children and BMI <18.5 kg/m2 for adults, and overweight or obese status defined as BMIp >85% for children and BMI >25 kg/m2 for adults. Analyses were adjusted for patient sociodemographic and clinical characteristics. RESULTS: The study population included 11,971 pediatric and 14,817 adult PwCF. A total of 137 CF programs responded to the survey, representing 71% of the pediatric sample and 45% of the CFFPR adult sample. The joint models of nutritional status as a function of both program-level food insecurity screening and area-level food access produced the following findings. Among children with CF, screening at every visit vs less frequently was associated with 39% lower odds of being underweight (OR 0.61, p = 0.019), and the effect remained the same and statistically significant after adjusting for all covariates (aOR 0.61, p = 0.047). Residence in a food desert was associated both with higher odds of being underweight (OR 1.66, p = 0.036; aOR 1.58, p = 0.008) and with lower BMIp (-4.81%, p = 0.004; adjusted -3.73%, p = 0.014). Among adults with CF, screening in writing vs verbally was associated with higher odds of being overweight (OR 1.22, p = 0.028; aOR 1.36, p = 0.002) and higher BMI (adjusted 0.43 kg/m2, p = 0.032). Residence in a food desert was associated with higher odds of being underweight (OR 1.48, p = 0.025). CONCLUSIONS: Food insecurity screening and local food access are independent predictors of nutritional status among PwCF. More frequent screening is associated with less underweight among children with CF, whereas screening in writing (vs verbally) is associated with higher BMI among adults. Limited food access is associated with higher odds of being underweight in both children and adults with CF, and additionally with lower BMI among children with CF. Study results highlight the need for standardized, evidence-based food insecurity screening across CF care programs and for equitable food access to optimize the nutritional outcomes of PwCF.

Nutritional considerations for a new era: A CF foundation position paper.

OBJECTIVE: To provide interim advice and considerations to the CF Community around CF nutrition in the current era. METHODS: The Cystic Fibrosis (CF) Foundation organized a multidisciplinary committee to develop a Nutrition Position Paper based on the rapidly changing nutrition landscape in CF, due in part to widespread use of cystic fibrosis transmembrane regulator highly effective modulator therapy (HEMT). Four workgroups were formed: Weight Management, Eating Behavior/Food Insecurity, Salt Homeostasis and Pancreatic Enzyme use. Each workgroup conducted their own focused review of the literature. RESULTS: The committee summarized current understanding of issues pertaining to the four workgroup topics and provided 6 key take-aways around CF Nutrition in the new era. CONCLUSION: People with CF (pwCF) are living longer, particularly with the advent of HEMT. The traditional high fat, high calorie CF diet may have negative nutritional and cardiovascular consequences as pwCF age. Individuals with CF may have poor diet quality, food insecurity, distorted body image, and an higher incidence of eating disorders. An increase in overweight and obesity may lead to new considerations for nutritional management, given potential effects of overnutrition on pulmonary and cardiometabolic parameters.

Family asthma management in urban children and its association with sleep outcomes.

Asthma symptoms impact children's sleep quality. However, it is unclear how families' daily management of their child's asthma is associated with sleep quality. We examine associations between family asthma management components and sleep duration and quality for urban children (ages 7-9 years). Additionally, we examine these associations by racial/ethnic group. Data were collected as part of a longitudinal study that examined the co-occurrence of asthma, allergic rhinitis, sleep quality, and academic functioning for urban children diagnosed with persistent asthma (N = 196). A semi-structured interview assessed family asthma management practices. Sleep quality data were collected via actigraphy. Our visual depiction of sleep outcomes show that those with higher family asthma management ratings present with longer sleep duration and better sleep quality. Among specific family asthma management components, we found a significant association between children's adherence to asthma medications and number of nighttime awakenings. For non-Latino Black (NLB) children, we found a significant association between environmental control and sleep duration. For urban children with asthma, clinical strategies to enhance overall family asthma management have the potential to support improved sleep quality. Additionally, for NLB children, asthma management interventions that provide environmental control practices may increase sleep duration.

Physical activity, lung function, and sleep outcomes in urban children with asthma.

OBJECTIVES: To examine (1) whether daily declines in physical activity (PA) level and/or in lung function (FEV1) predict an asthma exacerbation in a sample of urban children with asthma, and (2) the association between number of sleep awakenings and decline in daytime PA in this group. METHODS: In this sample of urban children aged 7-9 years with persistent asthma (N = 147), objective methods assessing lung function via a handheld spirometer and moderate-to-vigorous physical activity (MVPA) via accelerometry were measured over a 4-week period during the fall and early winter of each year as part of a larger 5-year study. RESULTS: In the entire sample, a significant association between PA and lung function was noted such that a greater decline in daily MVPA was associated with lower odds of exacerbation. Ethnic group differences showed that this association was also significant only among Latino children (odds ratio [OR] = 0.98; 95% confidence interval [CI]:0.97-0.99). A greater number of sleep awakenings were associated with greater declines in daily MVPA among Latinos only (p = .05). CONCLUSIONS: Results suggest that declining MVPA may contribute to lower risk for an exacerbation. Reasons for declining MVPA need to be further explored in this group. Children with asthma may avoid or be fearful of engaging in PA or may face early symptoms which influence patterns of PA, and this may minimize risk for an exacerbation. Results also suggest reasons for night-time disruptions may need to be targeted in further research or interventions as they can contribute to PA avoidance in this high-risk group.