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1.
J Cyst Fibros ; 20 Suppl 3: 3-8, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587345

ABSTRACT

BACKGROUND: Novel therapies have dramatically changed cystic fibrosis (CF) and innovative care delivery systems are needed to meet future patient needs. Telehealth has been shown to be an efficient and desirable form of care delivery. The COVID-19 pandemic caused a rapid shift to telehealth, and this presented a unique opportunity to study facilitators, barriers, and satisfaction with this mode of care delivery. We aim to report survey methods, demographics and telehealth use among CF care programs, patients, and families during the pandemic. METHODS: CF programs completed two surveys between July 29 and September 18, 2020, and between April 19 and May 19, 2021. Patients and families completed a similar survey between August 31 and October 30, 2020. The surveys addressed topics assessing the pandemic's financial impact, telehealth modes and experiences, licensure and reimbursement issues, health screening, and remote monitoring. Quantitative data were analyzed with descriptive statistics and were compared to the CF Foundation Patient Registry. RESULTS: Most programs (278 at timepoint one and 274 at timepoint two) provided telehealth during the pandemic. The percent of visits containing either telephone or video components changed from 45% to 25% over the time periods. Additionally, 424 patients and families from various ages and backgrounds responded to the survey and 81% reported having a telehealth visit. CONCLUSIONS: The pandemic accelerated telehealth adoption and these datasets are a valuable source for exploring telehealth barriers and facilitators, the quality-of-care experience, financial and workforce implications, the impact on underrepresented populations, and implications for coverage and reimbursement.


Subject(s)
COVID-19 , Cystic Fibrosis , Health Services Accessibility , Telemedicine , Adult , COVID-19/epidemiology , COVID-19/prevention & control , Child , Communicable Disease Control/methods , Communication Barriers , Continuity of Patient Care , Costs and Cost Analysis , Cystic Fibrosis/epidemiology , Cystic Fibrosis/psychology , Cystic Fibrosis/therapy , Female , Health Services Accessibility/organization & administration , Health Services Accessibility/trends , Humans , Male , Organizational Innovation , Patient Satisfaction/statistics & numerical data , Quality of Health Care , SARS-CoV-2 , Telemedicine/organization & administration , Telemedicine/standards , United States/epidemiology
2.
J Cyst Fibros ; 20 Suppl 3: 9-13, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587343

ABSTRACT

BACKGROUND: Cystic fibrosis (CF) care programs in the United States rapidly adopted telehealth during the COVID-19 pandemic. Understanding factors that promote or impede telehealth will inform planning for future telehealth-enabled care models. METHODS: Adult, pediatric, and affiliate CF care programs in the United States (n = 287) were surveyed twice eight months apart in 2020-2021 about telehealth use. Programs were asked to describe barriers to and promoters of telehealth. RESULTS: Ninety-seven percent of programs provided telehealth services. In the first CF Care Program State of Care Survey (SoC1), programs estimated that 57% of patients exclusively received in-person care, 36% of patients received telehealth by phone/computer with video, and 8% of patients received telephone-only care. In the second CF Care Program State of Care Survey (SoC2), programs estimated that 80% of visits were in-person and 15% were via audio and video telehealth. Pediatric programs (21%) were less likely than adult (37%) or affiliate (41%) programs to recommend telehealth (p = 0.007). All programs ranked lack of internet access as the highest barrier to patient engagement with telehealth. Promoters of telehealth were increased accessibility and avoidance of infection transmission. Top ranked changes to improve telehealth were expanded provision of remote monitoring devices and technology access. Similar proportions of program types anticipated institutional telehealth expansion. CONCLUSION: During the COVID-19 pandemic, CF programs in the United States identified factors to improve future care delivery via telehealth. Targeting specific barriers and promoters will improve the use and quality of telehealth throughout the care center network.


Subject(s)
COVID-19 , Communication Barriers , Cystic Fibrosis , Disease Transmission, Infectious/prevention & control , Health Services Accessibility , Patient Participation , Telemedicine , Adult , COVID-19/epidemiology , COVID-19/prevention & control , Child , Cystic Fibrosis/epidemiology , Cystic Fibrosis/psychology , Cystic Fibrosis/therapy , Female , Health Services Accessibility/organization & administration , Health Services Accessibility/trends , Humans , Internet Access , Male , Needs Assessment , Patient Participation/methods , Patient Participation/psychology , Patient Satisfaction/statistics & numerical data , Quality Improvement , SARS-CoV-2 , Telemedicine/methods , Telemedicine/organization & administration , Telemedicine/standards , United States/epidemiology
3.
J Cyst Fibros ; 20 Suppl 3: 1-2, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587341

ABSTRACT

The findings of this body of work are presented in the eight articles included in this supplement. The impact and perspectives of adult and pediatric care teams and patient/families are covered with special attention to mental health care, the financial and personnel impacts within care programs, the experiences of vulnerable and underrepresented patient populations, and implementation of remoting monitoring. Commentaries from colleagues provide a broader perspective, offering reflections on the findings and their implications regarding the future CF care model.


Subject(s)
COVID-19 , Cystic Fibrosis , Delivery of Health Care, Integrated/organization & administration , Delivery of Health Care/trends , Telemedicine , COVID-19/epidemiology , COVID-19/prevention & control , Communicable Disease Control/methods , Continuity of Patient Care , Cystic Fibrosis/epidemiology , Cystic Fibrosis/therapy , Health Services Accessibility/organization & administration , Health Services Accessibility/trends , Humans , Organizational Innovation , SARS-CoV-2 , Telemedicine/organization & administration , Telemedicine/standards , United States/epidemiology
4.
J Cyst Fibros ; 20 Suppl 3: 23-28, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587339

ABSTRACT

BACKGROUND: The COVID-19 pandemic forced cystic fibrosis (CF) care programs to rapidly shift from in-person care delivery to telehealth. Our objective was to provide a qualitative exploration of facilitators and barriers to: 1) implementing high-quality telehealth and 2) navigating reimbursement for telehealth services. METHODS: We used data from the 2020 State of Care CF Program Survey (n=286 U.S. care programs) administered in August-September to identify two cohorts of programs, with variation in telehealth quality (n=12 programs) and reimbursement (n=8 programs). We conducted focus groups and semi-structured interviews with CF program directors and coordinators in December 2020, approximately 9 months from onset of the pandemic. We used the Consolidated Framework for Implementation Research to identify facilitators and barriers of implementation, and inductive thematic analysis to identify facilitators and barriers of reimbursement. RESULTS: Factors differentiating programs with greater and lower perceived telehealth quality included telehealth characteristics (perceived advantage over in-person care, cost, platform quality); external influences (needs and resources of those served by the CF program), characteristics of the CF program (compatibility with workflows, relative priority, available resources); characteristics of team members (individual stage of change), and processes for implementation (engaging patients and teams). Reimbursement barriers included documentation to optimize billing; reimbursement of multi-disciplinary team members, remote monitoring, and telephone-only telehealth; and lower volume of patients. CONCLUSIONS: A number of factors are associated with successful implementation and reimbursement of telehealth. Future efforts should provide guidance and incentives that support telehealth delivery and infrastructure, share best practices across CF programs, and remove barriers.


Subject(s)
COVID-19 , Communication Barriers , Cystic Fibrosis , Disease Transmission, Infectious/prevention & control , Health Services Accessibility , Patient Participation , Telemedicine , Adult , Attitude of Health Personnel , COVID-19/epidemiology , COVID-19/prevention & control , Child , Cystic Fibrosis/epidemiology , Cystic Fibrosis/psychology , Cystic Fibrosis/therapy , Health Services Accessibility/organization & administration , Health Services Accessibility/trends , Humans , Needs Assessment , Patient Participation/methods , Patient Participation/psychology , Qualitative Research , Quality Improvement , Reimbursement Mechanisms , SARS-CoV-2 , Telemedicine/economics , Telemedicine/methods , Telemedicine/standards , United States/epidemiology
5.
J Cyst Fibros ; 20 Suppl 3: 41-46, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587338

ABSTRACT

BACKGROUND: During the COVID-19 pandemic, CF centers shifted to a telehealth delivery model. Our study aimed to determine how people with CF (PwCF) and their families experienced telehealth and assessed its quality and acceptability for future CF care. METHODS: The CF Patient and Family State of Care Survey (PFSoC) was fielded from August 31-October 30, 2020. The PFSoC explored themes of overall telehealth quality, ease of use, desirability, and preference for a future mix of in-person and telehealth care. Demographic covariates considered included: gender, age, CFTR modulator status, and region of residence. RESULTS: 424 PwCF and parents of PwCF responded (47% parents). Most (81%) reported a telehealth visit which included a MD/APP and nurse team members. 91% found telehealth easy to use, and 66% reported similar/higher quality than in-person care. One-third (34%) reported the highest desire for future telehealth care, with 45% (n =212) desiring 50% or more of visits conducted via telehealth. Adults were more likely than parents to report highest desire for future telehealth (64% vs. 36%). Respondents who perceived telehealth as similar/higher quality were more likely to desire future telehealth compared to those who perceived telehealth as lower quality (96% vs. 50%). Mixed methods analysis revealed themes affecting perceptions of telehealth. CONCLUSIONS: PwCF desire for future telehealth was influenced by perception of quality and age. Several themes emerged that need to be explored as telehealth is adapted into the CF chronic care model, especially when thinking about integration into pediatric care.


Subject(s)
COVID-19 , Communication Barriers , Consumer Behavior/statistics & numerical data , Cystic Fibrosis , Disease Transmission, Infectious/prevention & control , Telemedicine , Adult , COVID-19/epidemiology , COVID-19/prevention & control , Child , Cystic Fibrosis/epidemiology , Cystic Fibrosis/psychology , Cystic Fibrosis/therapy , Family Health , Health Services Accessibility/organization & administration , Health Services Accessibility/trends , Humans , Models, Organizational , Patient Participation/methods , Patient Participation/psychology , Pediatrics/methods , Pediatrics/trends , Quality Improvement , Quality of Health Care/trends , SARS-CoV-2 , Telemedicine/methods , Telemedicine/organization & administration , Telemedicine/standards , United States/epidemiology
6.
J Cyst Fibros ; 20 Suppl 3: 49-54, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587337

ABSTRACT

BACKGROUND: Due to the COVID-19 pandemic, there was an uptake of telehealth in cystic fibrosis care. Previous studies show disparities in telehealth use based on socioeconomic status (SES). We aimed to: (1) understand telehealth use and perceptions and (2) identify the facilitators and barriers to telehealth use among people with CF and their families (PwCF) from diverse racial/ethnic and socioeconomic backgrounds. METHODS: We conducted an analysis of the 2020 Cystic Fibrosis State of Care surveys completed by PwCF (PFSoC), CF Care Programs (SoC1) and the CF Foundation Patient Registry (CFFPR). RESULTS: A total of 424 PwCF and 286 programs responded to the PFSoC and SoC1. Among PwCF, 90% self-identified as White, 6% as Hispanic/Latino, and 2% as Black. Racial/ethnic minorities were less likely to have had a telehealth visit (p=.015). This difference was pronounced among the Hispanic/Latino population (p<.01). Telehealth use did not differ by health insurance and was similarly offered independent of financial status. Compared to PwCF who denied financial constraints, those who reported financial difficulties found telehealth more difficult to use (p=.018) and were less likely to think that their concerns (p=.010) or issues that mattered most to them (p=.020) were addressed during telehealth. Programs perceived lack of technology, language barriers, and home conditions as barriers to telehealth in vulnerable populations. CONCLUSION: PFSoC and SoC1 identified differences in telehealth use and care perceptions by ethnicity, race, and socioeconomic characteristics. Further studies are needed to understand how telehealth can change access to CF care in diverse subpopulations.


Subject(s)
COVID-19 , Communication Barriers , Cystic Fibrosis , Minority Health , Telemedicine , COVID-19/epidemiology , COVID-19/prevention & control , Communicable Disease Control/methods , Cystic Fibrosis/economics , Cystic Fibrosis/ethnology , Cystic Fibrosis/psychology , Cystic Fibrosis/therapy , Financial Stress/ethnology , Health Services Accessibility/organization & administration , Health Services Accessibility/trends , Healthcare Disparities/ethnology , Healthcare Disparities/standards , Humans , Minority Health/ethnology , Minority Health/standards , Minority Health/statistics & numerical data , Needs Assessment , Organizational Innovation , SARS-CoV-2 , Socioeconomic Factors , Telemedicine/organization & administration , Telemedicine/standards , United States/epidemiology , Vulnerable Populations/statistics & numerical data
7.
J Cyst Fibros ; 20 Suppl 3: 16-20, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587336

ABSTRACT

BACKGROUND: Chronic care delivery models faced unprecedented financial pressures, with a reduction of in-person visits and adoption of telehealth during the COVID-19 pandemic. We sought to understand the reported financial impact of pandemic-related changes to the cystic fibrosis (CF) care model. METHODS: The U.S. CF Foundation State of Care surveys fielded in Summer 2020 (SoC1) and Spring 2021 (SoC2) included questions for CF programs on the impact of pandemic-related restrictions on overall finances, staffing, licensure, and reimbursement of telehealth services. Descriptive analyses were conducted based on program type. RESULTS: Among the 286 respondents (128 pediatric, 118 adult, 40 affiliate), the majority (62%) reported a detrimental financial impact to their CF care program in SoC1, though fewer (42%) reported detrimental impacts in SoC2. The most common reported impacts in SoC1 were redeployment of clinical staff (68%), furloughs (52%), hiring freezes (51%), decreases in salaries (34%), or layoffs (10%). Reports of lower reimbursement for telehealth increased from 30% to 40% from SoC1 to SoC2. Projecting towards the future, only a minority (17%) of program directors in SoC2 felt that financial support would remain below pre-pandemic levels. CONCLUSIONS: The COVID-19 pandemic resulted in financial strain on the CF care model, including challenges with reimbursement for telehealth services and reductions in staffing due to institutional changes. Planning for the future of CF care model needs to address these short-term impacts, particularly to ensure a lack of interruption in high-quality multi-disciplinary care.


Subject(s)
COVID-19 , Continuity of Patient Care , Cystic Fibrosis , Health Services Accessibility , Models, Organizational , Telemedicine , Adult , COVID-19/epidemiology , COVID-19/prevention & control , Child , Continuity of Patient Care/organization & administration , Continuity of Patient Care/standards , Costs and Cost Analysis , Cystic Fibrosis/economics , Cystic Fibrosis/epidemiology , Cystic Fibrosis/therapy , Health Services Accessibility/organization & administration , Health Services Accessibility/trends , Health Services Needs and Demand , Humans , Organizational Innovation , Personnel Staffing and Scheduling/organization & administration , Reimbursement Mechanisms/trends , SARS-CoV-2 , Telemedicine/economics , Telemedicine/methods , United States/epidemiology
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