ABSTRACT
Background: Food insecurity—lack of consistent access to enough affordable, nutritious food—is noted in 33% of people with CF. This is 3 times the food insecurity rate of the general U.S. population [1, 2]. Given this increased prevalence within the CF community, we sought to understand how people with CF experiencing food insecurity prefer to receive resources and support. The results were used to inform and prioritize creation of patient-centered resources for CF care teams. Methods: A survey request was posted via the CF Foundation’s Community Voice (CV), a program that provides opportunities for people with CF and their family members to influence programs and initiatives affecting the CF community [3]. A total of 1134 CV participants who identified as an adult with CF, a spouse of a person with CF, or a parent of a child with CF were invited to respond to an anonymousweb-based survey from February 3–17, 2021. Results: Therewere 140 responses to the survey. From these responses, 84% (117/140) reported prior knowledge of food insecurity, and 21% (30/140) reported experiencing some degree of food insecurity. Of those reporting food insecurity, 73% (22/30) worried about running out of food before having money to buy more, and 67% (20/30) reported that their food did not last and that they did not have money to buy more. Half (15/30) indicated that their family or household food status worsened because of the COVID-19 pandemic. Respondents indicating food insecurity reported assistance preferences including local community resources (57%, 17/30), their care team social worker (40%, 12/30), and community and religious support groups (43%,13/30). Additionally, respondents preferred to receive food security resources via email (87%, 26/30), website (50%, 15/30), or patient portal (43%, 13/30). To bolster food status, respondents preferred to receive grocery store gift cards (93%, 28/30) or a food box mailed to the home (77%, 23/30) or to use a food pantry (70%, 21/30). Conclusion: Results indicated that people with CF who experience food insecurity prefer to receive food in a variety ofways, many being virtually or through private organizations. These resources may be preferred because of the level of anonymity, less perceived stigma, increased autonomy of choice, and ease of use.We believe this is in part why people experiencing food insecurity report a preference to obtain resources electronically (email, website, patient portal). About 40% of respondents identified their care team social worker as a preferred contact to advocate, connect, and educate on food resources, highlighting the importance of a trusting, safe relationship between care team social workers and patients. Based on our survey results, the CF Food Security Committee has prioritized the creation of handouts to support care centers interested in starting a food pantry or food box program. These and other educational documents about food insecurity are available to clinicians in the My.CFF resource library.
ABSTRACT
Introduction: The rate of food insecurity (FI) among Americans is 10.5%. A recent U.S. study found 33% of people with cystic fibrosis (PwCF) experience FI. We sought to understand the needs for those seeking assistance with food through Compass and how these needs changed due to COVID-19. CF Foundation Compass is a free, personalised case management service to help with insurance, financial, legal, and other issues PwCF are facing. Methods: We identified Compass calls between January 1, 2019 to December 31, 2020 related to food assistance. We reviewed whether callers had an additional need reported during the call. For 2020 calls, we also determined whether their needs could be met by community resources;2019 referral data was not available. Results: Compass received 174 requests for food assistance. Food requests almost tripled between 2019 (47) and 2020 (127). Of the 174 food requests, 60% of callers had an additional need and 38% had 2 or more additional needs. 75% of the additional needs related to other social factors including utility costs (33%), housing (27%), medical needs (13%), and car issues (5%). In 2020, half of food needs (44%) were not met by community resources. 17% of callers did not follow Compass recommendations. Conclusions: Given the unique caloric needs of PwCF, lack of food is a concern. Food access in the U.S. has been impacted by COVID-19 and community resources are scarce. People facing FI are more likely to have other social needs, such as affordable housing. CF clinicians are uniquely positioned to have sensitive conversations and address these factors to understand the need and improve quality of life for their patients. This can be accomplished by screening for social factors and collecting and evaluating the data. The CF Foundation has enhanced Compass training for responding to food inquiries and put together a Food Security Committee of clinicians and community members focused on research, education, quality improvement, and advocacy.