key: cord-0967035-ij2l9548
authors: Soltman, S.; Gardner, D.; Swift, A.
title: 79: A patient satisfaction survey regarding the use of telemedicine for outpatient CF endocrinology and diabetes care during the COVID-19 pandemic
date: 2021-11-30
journal: Journal of Cystic Fibrosis
DOI: 10.1016/s1569-1993(21)01504-6
sha: 934b176caa557a5be547f23fc2fcbc4d8632d39f
doc_id: 967035
cord_uid: ij2l9548

nan

Background: The COVID-19 pandemic necessitated a large and rapid change in the way many patients receive routine outpatient care. As of July 2020, the Adult CF Endocrinology and Diabetes Clinic has offered 50% of visits as telemedicine encounters ( phone or video virtual visits) and 50% as traditional in-person appointments. There is a lack of data on how satisfied CF patients are with telemedicine for routine endocrinology and diabetes care during the COVID-19 pandemic. Furthermore, it is unknown if these patients would like to continue utilizing telemedicine post-pandemic.

Methods: A survey about the CF patient experience with telemedicine during the COVID-19 pandemic was created on Microsoft Forms. The survey was distributed to all 236 patients seen in the OHSU Adult CF Multidisciplinary Clinic via email and/or their electronic health record. Fifteen of these 236 patients who were contacted had been seen virtually in the Adult CF Endocrinology and Diabetes Clinic. Results: The survey was completed by 11 out of 15 patients who had attended a telemedicine appointment in the OHSU Adult CF Endocrinology and Diabetes Clinic, for a response rate of 73%. Of these 11 patients, 9 had attended at least 1 video virtual visit, and 2 patients attended only phone virtual visits. Nine out of the 11 patients (82%) "agreed" or "strongly agreed" that they could satisfactorily address their health care needs during the visit. Nine out of the 11 patients (82%) "agreed" or "strongly agreed" that they would like to see telehealth continue to be an option in the Adult CF Endocrinology and Diabetes Clinic after the COVID-19 pandemic is over. Six out of 8 patients (75%) indicated that they were able to satisfactorily upload and review their glucose data with the provider during the visit, while 2 patients (25%) stated that they were unable to upload their glucometer from home. In the free prompts, patients remarked on improved access to care, convenience, perceived safety from COVID-19, and reduced time off work that telemedicine afforded. Two patients commented that they missed the face-to-face interaction of clinic appointments. Conclusion: The majority of patients who attended the OHSU Adult CF Endocrinology and Diabetes Clinic virtually during the COVID-19 pandemic felt that telemedicine satisfactorily addressed their health needs. The majority of these patients also indicated that they would like telemedicine to continue to be an option after the pandemic is over. If telemedicine clinics continue post-pandemic, it might improve the patient experience by increasing convenience and access to care. Telemedicine may also decrease work absenteeism and the time and money spent physically traveling to clinic. For diabetes care, some patients will require additional support in uploading glucose data prior to virtual visits to ensure a maximally productive and efficient visit. Acknowledgements: This work was supported by a grant through the CFF Background: The New York State (NYS) Cystic Fibrosis Newborn Screening Consortium (NYSCFNBS) has cooperated in advocating for continued monitoring of outcomes and improvement in CF newborn screening (NBS) through quality improvement (QI) since 2002. The 10 CF Foundationaccredited CF centers have a close working relationship with the NYS Department of Health (DOH) Wadsworth Screening Lab. This cooperative approach has resulted in several interventions to improve the screening program in NYS. In 2002, NYS initiated an IRT, 39 CF mutation screening algorithm. On December 1, 2017, infants with 1 CF mutation identified began to undergo full CFTR gene sequencing; those infants with 2 CF mutations are referred to CF centers. Subsequently, the state replaced the 39 mutation panel with a 338 mutation panel, followed by the sequencing step when 1 CF mutation is detected. The new screening algorithm increases infants classified as CF-related metabolic syndrome (CRMS) in the United States, or CF screen positive inconclusive diagnosis (CFSPID) in Europe. CRMS is used to describe these infants with a sweat chloride value < 30 mmol/L and 2 CFTR mutations, or an intermediate sweat chloride value (30-59 mmol/L) and 1 or no CF-causing mutations. Between 10% and 20% of CRMS/CFSPID individuals can develop clinical features suggestive of CF. This project is an extension of a 2-year CFNBS QI project, which was developed due to the COVID-19 pandemic. NYS was the epicenter of the pandemic in the spring of 2020. Due to statewide lockdown, all CF centers were closed for 2 months, and sweat testing for infants with an abnormal CFNBS was not available. Parents of CRMS/CFSPID infants were lost to follow-up because of anxiety about returning to the CF center during the pandemic. This QI project aims to educate the parents and primary care physicians (PCP) to increase awareness and monitor these infants over several years and standardizing care across the 10 NYS CF care centers. Methods: Since the initiation of the sequencing algorithm in December 2017, 250 CRMS/CFSPID infants had been diagnosed. A parental questionnaire was developed to assess their willingness to be contacted by the CF team to return for a CF clinic visit and repeat sweat test. Parental agreement to permit the CF team to contact the PCP to educate them concerning CRMS/CFSPID was requested. The questionnaire and QI project were shared with the CF Foundation Clinical Research Community Engagement specialist to facilitate parental feedback from the CF community voice team. Monthly Zoom meetings were held with all 10 NYS CF teams to implement the QI effort. Results: Each CF center is in the process of contacting CRMS/CFSPID patients and their pediatricians and assessing their previous evaluation, including genetic counseling, their knowledge of CRMS/ CFSPID, and willingness to follow up at the CF center again. This data is being collected and analyzed currently. Conclusion: Despite CRMS/ CFSPID guidelines published in 2009 [1] , there is controversy regarding management and follow-up of these infants, as well as on the education of busy PCP on this topic. The NYS NBS program offers a unique opportunity to assess infants with CRMS/CFSPID due to the full genetic sequencing available in these infants, and the NYSCFNBS QI data on the follow-up of these infants will help in the understanding and monitoring of this condition.

Cystic Fibrosis Foundation practice guidelines for the management of infants with cystic fibrosis transmembrane conductance regulator-related metabolic syndrome during the first 2 years of life and beyond