key: cord-0749159-ontzztu2
authors: Holzum, H.; Nelson, K.; Granneman, J.; Acton, J.; Nevel, R.
title: 343: Impact of the SARS-CoV-2 pandemic and a food pantry on food insecurity in a pediatric cystic fibrosis center
date: 2021-11-30
journal: Journal of Cystic Fibrosis
DOI: 10.1016/s1569-1993(21)01767-7
sha: 80acd5e258ecf10bc8429de9c57d40fb07cfd6af
doc_id: 749159
cord_uid: ontzztu2

nan

Background: The Cystic Fibrosis Foundation promotes and supports partnerships between patients, families, and clinical care teams to design delivery of health care with a goal of co-producing positive health outcomes. In 2018, the University of Virginia (UVA) adult CF program began planning to create conditions for supporting a patient advisory partnership. It was imperative that initiation and sustainability be achieved in the context of limited financial resources and fluctuating availability of care team members' time. An idea for a self-forming and self-governing advisory group emerged as a solution, and a goal was set to recruit 5 to 7 adults with CF to test the concept. Methods: The CF social worker and quality improvement leader performed literature reviews, interviewed other advisory groups, and met with organizational leaders to assess needs and requirements for formally establishing this relationship. The social worker introduced the advisory group idea to patients during routine visits, and those expressing interest were invited to an online question-and-answer session. The social worker and quality improvement leader were given FTE support to serve as care team representatives and advisory staff. The organization provided virtual collaboration tools such as secure file sharing and storage and Zoom access. After the question-and-answer session, patients were invited to become founding members of the advisory group, and those who accepted underwent volunteer training and orientation, completed limited background checks, and signed privacy agreements per the organization's policy. The group agreed to monthly virtual meetings with at least one staff advisor and created a charter and group bylaws. Patient members share responsibility for preparing meeting agendas and minutes and use email for between-meeting communication.

Results: After the formation period, the UVA Adult Patient Advisory Council (PAC) emerged ( Figure 1 ). The mission of the PAC is to partner with people with CF and the clinical care team toward a shared goal of "enhancing clinic practices, developing and implementing improvement strategies, and advocating on behalf of the entire CF population" (UVA Adult PAC Bylaws, 2019). Of 7 patients recruited, 4 currently serve on the PAC. One member is part of the UVA adult quality improvement team leadership triad in association with the CF Learning Network and is the formal PAC liaison. In mid-2020, the social worker left the organization, and the CF psychologist rotated into the vacant advisory staff role. Operational costs for the PAC have been nonexistent, and care team involvement after the formation period has averaged 2 to 3 hours per month. PAC contributions to care delivery have included environmental scanning for improvement opportunities through community polling and social media campaigns, patient experience data review, and sharing insights and first-person experiences to improve care design and delivery. The PAC is also instrumental in communicating and promoting clinic process changes through newsletters, social media, and other patientfacing materials. Conclusion: It is feasible to form and engage a virtual patient advisory group that complies with organizational standards and has a high impact with relatively low cost and effort for care teams. In the future, the application of quality improvement concepts and tools will strengthen PAC initiatives, requiring grant funding or more organizational support. Homogeneity of current members is recognized as a limitation, and thoughtful recruitment strategies to increase diversity are being planned.

Impact of the SARS-CoV-2 pandemic and a food pantry on food insecurity in a pediatric cystic fibrosis center H. Holzum 1 , K. Nelson 2 , J. Granneman 1 , J. Acton 3 , R. Nevel 3 . 1 Clinical Nutrition, University of Missouri, Columbia, USA; 2 Pediatric and Adolescent Specialty Clinic, MU Women's and Children's Hospital, Columbia, USA; 3 Child Health, University of Missouri Health System, Columbia, USA Background: The U.S. Department of Agriculture defines food insecurity as "a household-level economic and social condition of limited or uncertain access to adequate food," and data demonstrate that 12.8% of homes in Missouri are food insecure [1, 2] . Caloric needs of people with cystic fibrosis (CF) are higher than those without CF [3, 4] . The recent global SARS-CoV-2 pandemic has resulted in additional financial stressors that may increase food insecurity for families. We hypothesize that the SARS-CoV-2 pandemic may affect the rate of food insecurity in our CF population and that children who are provided with access to adequate nutrition through an in-clinic CF food pantry will show a decrease in reported food insecurity and an increase in weight-for-length or BMI percentile. Methods: Families in our pediatric CF center were anonymously screened for food insecurity during the 6 months before and 6 months after onset of the SARS-CoV-2 pandemic. A food pantry was established for our CF center with an inventory of high-calorie, high-fat, high-salt, nutritious, shelfstable foods and supplements. Food insecurity screening will be completed 6 months after implementation of the CF food pantry. Pre/post-intervention weight-for-length and BMI data were analyzed. Results: During the pre-SARS-CoV-2 screening period, of 53 families screened, 27 (50%) were food insecure. Additional findings demonstrated that only 14 (50%) of those who were food insecure had access to other food assistance programs. During the screening period after the onset of the pandemic, of 59 families screened, 30 (50%) were food insecure. Although this was a similar rate of food insecurity, 19 families (32%) reported that COVID affected their food security. Weight-for-length and BMI percentiles were similar before and after the onset of the pandemic, with 23% and 27% of subjects less than the 50th percentile, respectively. After food pantry intervention, there was a decrease in rate of patients with at-risk nutritional status (weight-for-length or BMI less than 50 th percentile) to 13%. Rate of food insecurity post-intervention is being assessed using a screening tool. Conclusion: Food insecurity is a challenge for children, with half of the families in our CF center screening positive for food insecurity before and after the onset of the global SARS-CoV-2 pandemic. Although nutritional support programs are available, only half of those who are food insecure in our center access food assistance programs. Additionally, the SARS-CoV-2 pandemic is reported by 32% of families screened to have affected their food security. A food pantry available to all patients in our CF center provides access to high-calorie, nutritious foods and supplements. There has been a decrease in the percentage of our CF center subjects with at-risk nutritional status from 27% to 13% after implementation of an in-clinic food pantry.

Background: Optimizing growth and weight by consuming enough nutrients is a key component of cystic fibrosis (CF) care. Many people with CF must consume more calories than the average person without CF. Subsequently, food costs are higher. According to the U.S. Department of Agriculture, food insecurity is defined as a disruption of food intake or eating pattern because of lack of money or other resources. The CF Health Insurance Survey noted that 33% of people with CF in the United States have experienced food insecurity, which is triple the national average of 10.5%. Our objective was to implement food insecurity screening for 100% of our families at our pediatric CF center. Methods: We planned to begin food insecurity screening at all CF clinic visits using a handout with 2 validated questions in March f 2020. With the onset of the coronavirus pandemic in March 2020 and the transition to telehealth visits rather than in-person visits, food insecurity screening transitioned to our electronic preclinic questionnaire, which is assigned to families before each clinic visit. We asked the following 2 food insecurity questions: In the last 3 months, have you worried that your food would run out before you had money to buy more? In the last 3 months, did your food ever not last, and you did not have money to buy more? If they answered "yes" to either of these questions, the following question appeared: How would you like to discuss food support? Families were offered the option of discussing during clinic or by phone outside of clinic. Results: We initiated food insecurity screening in July 2020, and during the next 6 months, had 527 CF visits during which we screened 323 families (61%), with 8 families screening positive (2.5%). We were unable to screen 204 families (39%) because they were not assigned the questionnaire. We identified reasons why the food insecurity screening was not completed. The most common reason was change from in-person to telehealth visit. Subsequently, the questionnaire was not automatically assigned. Other reasons included multidisciplinary clinics and research visits, where the questionnaire was not automatically assigned. To meet our objective of screening 100% of families during the pandemic, we partnered with our hospital IT team to determine why questionnaires were not being assigned to all families. IT expanded the assignment of questionnaires to all types of CF visits in our electronic health record and set up an automatic alert system to notify specific staff using an in-basket message for positive screens. Finally, IT created a flowsheet allowing us to easily identify which families completed food insecurity screening. Future work includes documentation and tracking of food insecurity interventions, follow-up from positive screens, and creating a Spanish version of the questionnaire. Conclusion: Food insecurity may hinder a CF patient's ability to meet caloric goals. Given the impact of the pandemic on social needs, continued screening for food insecurity is necessary. Partnering with IT can help eliminate some barriers to screening. It is unclear why our CF center reported lower food insecurity than in the CF community. It may be a function of families using existing food insecurity interventions. More research in food insecurity is needed to assess the frequency of screening and the nutritional status of patients that screen positive, but screening all families for food insecurity is an important first step. Background: The CF center at Geisinger shifted some clinic visits in 2020 to video encounters to promote safety during the COVID-19 pandemic. Previous data from our CF center have shown high patient satisfaction rates for CF video return visits. We now aim to determine if care can be delivered via telemedicine without compromising the health of our CF patients. In addition, we aim to determine if there are cost savings in terms of travel expense and time by using telemedicine for some routine CF care. Methods: This was a retrospective review of 68 pediatric patients with CF who received care at Geisinger in 2019 and 2020, with a percentage of visits being done via telemedicine in 2020. Cost was analyzed by looking at the change in lung function (FEV 1 ), nutrition (BMI), and hospitalizations for cystic fibrosis between 2019 and 2020. Savings were analyzed by looking at travel time and expense saved per video visit in 2020. Results: For the 68 patients, the number of CF clinic visits declined an average of 0.68 visits/patient per year from 4.35 visits/patient per year in 2019 to 3.68 visits/patient per year in 2020 (median decline 0 visits/patient per year). In 2020, video visits averaged 1.37 video visits/patient per year (median 1 visit/patient per year, range 1-3). There was no significant difference in complete CF evaluations/year from 2019 to 2020 (evaluations by dietitian, social work, RT, RN, and psychology). For patients seen in 2020, there was a decline of 0.16 complete evaluations/patient per year (median 0). The change in FEV 1 from 2019 to 2020 was calculated from the best ppFEV 1 in each year. A significant FEV 1 decline was defined as 3% or greater. Of the 45 patients with FEV 1 data, 13 (28.9%) had a significant FEV 1 decline. Average FEV 1 for our population increased by 2.4% (median increase 1%). A significant BMI decline was defined as a 10% decrease from the highest BMI percentile from 2019 to 2020. Of 60 patients with BMI data, 9 (15%) had a significant decline. The average BMI for our population increased 0.4% (median increase 1%). Total hospitalizations for respiratory exacerbations declined 85.7%-from 14 in 2019 to 2 in 2020. With 4 visits per year, using the 2020 IRS standards ($0.17/mile), average travel cost/patient per year in our patient population is $80.50, which accounts for round-trip gas and vehicle wear and tear. Average annual travel time/patient per year was 553 minutes (9.22 hours). When looking at the actual cost savings to our patients in 2020, the average travel cost saved was $27.41/patient per year and average travel time saved was 192 minutes (3.20 hours/patient per year). Conclusion: Limitations of video visits include incomplete physical exams and inability to obtain certain tests, which means that in-person visits cannot be replaced completely. However, our data show that 1 to 2 telemedicine visits per year can be conducted without significant cost to patient health. This could save families up to half of their yearly costs in

Missouri Hunger Atlas

Disordered eating and body image in cystic fibrosis. Diet and exercise in cystic fibrosis

Life-With-CF/Daily-Life/Fitness-and-Nutrition/Nutrition/Getting-Your-Nutrients/Nutritional-Basics

Initiating food insecurity screening during a pandemic: Identifying and overcoming barriers

Hoppe 5 . 1 Nutrition, Children's Hospital Colorado, Aurora, USA; 2 Nutrition Therapy, Children's Hospital Colorado