key: cord-0915929-lzlf2vdw
authors: Compton, M.; List, R.; Starheim, E.; Williamson, L.; Jennings, D.; Gettle, L.; Murray, R.; Somerville, L.; Bruschwein, H.; Albon, D.
title: 131: Home spirometry utilization in telemedicine clinic for cystic fibrosis care during COVID-19 pandemic: A quality improvement process
date: 2021-11-30
journal: Journal of Cystic Fibrosis
DOI: 10.1016/s1569-1993(21)01556-3
sha: a7f1d5d12eb67f85946d7f6e5220f38b781de575
doc_id: 915929
cord_uid: lzlf2vdw

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Results: With regard to virtual work during the pandemic, our process improvements proved invaluable to our research team. This included research presence at weekly CF patient review meetings, where patients eligible for new studies and pending study visits are identified, allowing for onsite attendance by research coordinators (RCs) to be carefully coordinated. Compliance with our CFF Registry consent process continued and allowed for safe consenting with minimal staff on site. As for our transition to the new clinic space, we ensured that research was included in new technology for tracking patients and the communication system among providers and staff. Our research leadership advocated for dedicated work and storage space in the new clinic for RCs. The research team met with new clinical staff to educate on the intake sheet and review processes for research subjects within new space and workflows. Finally, with respect to collaboration between adult and pediatric teams, we have continued to rely on our established tools and processes, which continue to show benefit. We adapted to a new cloud-based system required by our institution for file sharing. We have increased referrals from our adult program, and continued our informal networking lunches to stay connected, which was extremely valuable in 2020. Conclusion: Quality improvement is an ongoing process and should be continually evaluated. We found that our prior improvements were both sustainable and applicable in other contexts, including a new clinic and virtual work. To continue to build our relationship with the clinical team, we plan to formally present the research program and distribute an updated newsletter to new clinical staff. We will continue to advocate for and represent the research program within the clinical teams and workflows.

Feedback from patients regarding their use of home spirometers Background: The COVID-19 pandemic created a challenging situation for cystic fibrosis (CF) centers and patients to monitor lung function via spirometry. The Cystic Fibrosis Foundation (CFF) supported home spirometry devices for patients and dashboard access until December 2020. After December 2020, we used funds from the CF center grant to cover access. Home spirometry allows for monitoring of lung function. We take this data into consideration along with respiratory symptoms to make treatment plans. Lindsey VonBokern RT (LV) contacted patients to inquire if they would be interested in receiving a home spirometer. LV sent the names of interested patients directly to the home spirometer company and they shipped the device to the patient. LV let patients know that there would be no cost to them and discussed the benefits of having a home spirometer. She provided education on how to use it and followed up via MyChart messages or phone calls based on patient's preferred communication method. Patients with frequent exacerbations and or reduced lung function were given priority. We requested patients use their home spirometers prior to virtual encounters. During virtual encounters, the providers would interpret their results with them. Methods: Our aim was to collect data from patients who received a home spirometer and determine if the results would change their behavior or routine CF care. After patients had their home spirometers for at least a month, they received a survey through MyChart. Patients who did not have MyChart access were excluded. The survey asked if patients made any behavioral changes based on their home spirometer data, such as increasing their airway clearance, changing their exercise routine, contacting the office, or starting inhaled antibiotics. Results: Home spirometers were sent to 89% (n = 139) of our patients. Surveys were sent to 127 patients during this timeframe ( Figure 1 ). Patients were grouped by their last in-office PFT FEV1. Of the patients surveyed, 76% indicated they did not make any changes in their behaviors or CF care based on their spirometry data; 24% of patients indicated they changed a behavior based on their spirometry data. Two patients increased their exercise, and 1 patient adjusted her medication regimen. Conclusion: The majority of patients did not change their behavior or routine CF care. Future direction: Evaluate access to MyChart when surveying patients; investigate alternatives to MyChart for answering surveys, such as telephone calls and letters; assess patients' understanding of PFT results and provide education on early intervention to prevent lung function decline; provide education to patients regarding behavioral modifications to preserve and or enhance lung function. Background: The Cystic Fibrosis Foundation (CFF) chronic care guidelines recommend monitoring spirometry during quarterly multidisciplinary visits to identify early lung function decline [1] . During the COVID 19 pandemic, the adult clinic at UVA transitioned routine multidisciplinary CF care encounters to telemedicine (TM). In order to continue monitoring for lung function decline in this environment, the care team needed to design and implement remote monitoring of FEV1 via home spirometer (HS) devices. The specific aims of this quality improvement (QI) project were to increase the percentage of eligible patients who owned a HS from 37% to 85% and to increase the percentage of patients with available spirometry in TM from 50% to 95% by December 31, 2020. Methods: Following the Model for Improvement QI methodology, a standardized process was developed for monitoring FEV1 with HS during multidisciplinary TM visits amidst the COVID-19 pandemic. An initial quantity of home spirometers obtained through grant funding for a previous QI project had already been distributed along with training. At the onset of the pandemic, CFF grant money was reallocated to obtain a second quantity of different devices to augment the program. Results were shared electronically or screenshots were taken during a TM visit and recorded on a tracking sheet and utilized for clinical care decisions. Distribution and teaching of the HS was executed using several methods of delivery, such as curbside pickup and prepaid shipping labels. Written instructions were delivered either electronically or via hard copy for those in person. Handouts were developed with step-by-step instructions on the use and sharing of results, and patients were coached by the RT virtually prior to or during TM visits. Results: Both specific aims were achieved ahead of expected date ( Figure 1 ). In March 2020, the beginning of the pandemic, 37% of patients owned a HS and 50% of patients seen via TM performed spirometry at home. By August 2020, 97% of adult patients at UVA owned a HS and by October 2021, 95% of patients provided spirometry results during their TM encounters. Conclusion: There were some barriers encountered during our process, such as loss of mouthpieces, devices not charged prior to clinic, and poor Wi-Fi connection. Some patients who did not trust their results were brought into clinic for verification. Spare mouthpieces were ordered, reminders were sent to patients within our pre-visit panning questionnaire, and a small number of HS that did not require Wi-Fi were ordered through the CFF. Now that more patients are being seen in person, next steps are to compare HS data with clinic-performed spirometry. Our team has shown that employing QI tools to standardize the process of monitoring spirometry data with home devices via TM is reliable and sustainable and can be replicated across centers that provide care for people with CF.

Background: Extended hospitalizations are common for CF patients and their families. Patients and families often complain of boredom and have difficult experiences with extended hospitalizations. Giving patients and families a voice is critical in meeting their needs during an extended hospitalization. Certified child life specialists (CCLS) are an important part of the inpatient team and are trained to assist patients and families to cope with hospitalizations. Our CCLS initiated a project to decrease boredom, improve the inpatient experience, and improve patient and family satisfaction during extended hospitalization. Methods: CF patients admitted to Levine Children's Hospital with pulmonary exacerbation (PE) were asked upon admission to complete a "Get to Know Me" questionnaire. The questionnaire collected information about the patient, such as their favorite color, crafts, games, etc. Based upon responses, a "Pick Me Up" basket was created to be presented to the patient within 24 hours of admission. The survey was collected electronically via Microsoft Forms and consisted of 4 questions to assess patient's boredom, busyness, engagement with the CF team, and discomfort. Always, sometimes, and never were used for responses to the survey questions. The same survey was repeated at the end of hospitalization (Table 1 ). For patients under the age of 7, a family member completed the questionnaire and survey. Survey Questions: 1. How often did you experience feelings of boredom? 2. How often did you feel you did not have enough activities to keep you busy? 3. How often did you feel disengaged with your care team? 4. How often did you experience discomfort?. Results: Questionnaires and surveys were completed by 7 CF patients/ families; 2 patients under 7 years and 5 patients over 7 years. Patients younger than 7 years were interested in items such as magnetic tiles, aqua beads, action figures, and board games. Patients older than 7 years were interested in items such as Legos, craft kits, card games, video games, art supplies, and basketball hoops. Items of interest were used to fill baskets. Pre-basket surveys showed that patients sometimes or always felt boredom during hospitalization. Post-basket surveys showed responses improved, with most being sometimes or never bored. Overall, the patients felt they had enough activities to stay busy. Engagement with care team improved with 4 patients. Feelings of discomfort improved for 3 patients. Conclusion: At the beginning of an extended hospitalization for a CF PE, this intervention of determining patients preferences and providing a "Pick Me Up" basket based upon these preferences decreased boredom, improved satisfaction, and for some decreased their feelings of discomfort. Background: With the advancement of medical therapies for cystic fibrosis (CF), there is renewed focus on the importance of health-related quality of life (HRQOL), including physical, mental, and nutritional health. There are many resources available to patients; however, coordination can be difficult due to the input of multiple disciplines and the diversity of information available. In this study, we conducted a quality improvement initiative to develop a website that would centralize resources to a convenient and accessible location. We sought to measure patients' baseline HRQOL and presence of vulnerabilities and to assess the impact of a web-based intervention on improvement in physical, mental, and nutritional wellness. 

Pick Me Up" basket for patients with CF and their families to decrease boredom and improve coping during extended hospitalizations A. Westmoreland 1 , K. Blevins 2 , D. Schellhase 2 . 1 Child Life Department, Levine Children's Hospital

Acknowledgements: Thank you to the CFF for funding home spirometers across the country.