ABSTRACT
Background: Since 2015, the Cystic Fibrosis Foundation (CFF) has collected and reported experience-of-care (XoC) data. Data collection was discontinued with the onset of the COVID-19 pandemic in 2020. In 2021, CFF convened a steering committee of a person with cystic fibrosis (CF), caregivers, and clinicians to develop a XoC survey to help understand and improve the XoC at CFF accredited programs. Method(s): Using prior CFF patient and family XoC surveys (2015-2020 pediatric and adult versions) [1,2] and a telehealth survey created in 2020 [3], draft pediatric and adult versions of the survey were developed. The steering committee and CFF leaders conducted three rounds of reviewand revision. After the surveys were professionally translated into Spanish, and the CFF Spanish Speakers Committee reviewed them, the surveys were programmed into Qualtrics for data collection. The data collection process was piloted with selected programs before a national launch. Result(s): Pediatric and adult surveys were developed in English and Spanish. The surveys cover in-person and telehealth (phone/video) visits and visits that are a mix of in-person and telehealth. The topics include interactions with care team members, relationship-centered care, care planning, shared decision-making, overall quality of care, race and ethnicity, gender identity, infection, prevention and control, quality of the virtual connection, and experience with remote monitoring. People with CF (PwCF) and their families are invited to complete a survey once every 6 months by text or email. PwCF and family contact data (email and mobile phone number) are stored in CFF's CFSmartReports Patient and Family Tool. After a clinic visit, contact data are electronically transferred to the Qualtrics platform to trigger a survey invitation. Responses are anonymous and reported back to programs via an electronic dashboard in near-real time. The data collection process was tested with three pediatric and three adult care programs for 3 weeks before the national launch on October 25, 2021. More than 2,000 PwCF and their families have completed a survey. Conclusion(s): The new XoC surveys offer PwCF and their families an opportunity to share feedback about their in-person and virtual care experiences. Efforts are underway to create a national report for dissemination and to engage programs with the data reported in their dashboards to celebrate what PwCF and their families appreciate about their care and to work together with them to improve gaps.Copyright © 2022, European Cystic Fibrosis Society. All rights reserved
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.