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1.
Int J Environ Res Public Health ; 19(6)2022 03 11.
Article in English | MEDLINE | ID: covidwho-1753481

ABSTRACT

The aims of this study were to (1) determine the feasibility of a home-based resistance exercise training (RET) program in patients with cystic fibrosis and impaired glucose tolerance using virtual personal training and (2) observe the effects completion of the RET program had on glucose metabolism, pulmonary function, body composition, and physical fitness. The feasibility of the program was defined as 80% compliance. Ten participants (15.80 ± 2.20 yr, 25.1 ± 7.4 kg/m2) began a home-based resistance training program consisting of 36 sessions supervised via online videoconferencing. Compliance scores of 78.9% (all participants) and 81.8% (without one outlier) were observed. A significant increase was observed in 2-h C-peptide levels (2.1 ng/mL; p = 0.04), with a moderate decrease in fasting glucose (-5.2 mg/dL; p = 0.11) and a moderate increase in 2-h insulin (35.0 U/mL; p = 0.10). A small decrease in the fat percentage (-1.3%; p = 0.03) was observed in addition to increases in fat-free mass (1.5 kg; p = 0.01) and the fat-free mass index (0.4; p = 0.01). Small, yet statistically significant increases were observed in V̇O2peak (0.1 L/min p = 0.01), V̇CO2peak (0.1 L/min; p = 0.01), and ventilation (5.3 L/min; p = 0.04). Telehealth-based RET is feasible in adolescents with CF and impaired glucose tolerance and elicits small yet favorable changes in insulin secretion, body composition, and exercise capacity.


Subject(s)
Cystic Fibrosis , Glucose Intolerance , Resistance Training , Telemedicine , Adolescent , Cystic Fibrosis/therapy , Feasibility Studies , Glucose Intolerance/therapy , Humans
3.
J Cyst Fibros ; 20 Suppl 3: 47-48, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587348

ABSTRACT

The COVID-19 pandemic has accelerated the use of telehealth within the cystic fibrosis (CF) community to deliver CF care. The article by Solomon and colleagues exploring the patient and family experiences of telehealth care delivery, as part of the CF chronic care model in the US, is therefore timely. In this commentary, we discuss how the US experience of telehealth care compares with reports from CF centres in other parts of the world. We highlight the potential challenges, including whether the inverse care law will apply in this new era of CF telehealth.


Subject(s)
COVID-19 , Cystic Fibrosis , Telemedicine , Cystic Fibrosis/epidemiology , Cystic Fibrosis/therapy , Humans , Pandemics , SARS-CoV-2
5.
J Cyst Fibros ; 20 Suppl 3: 31-38, 2021 Dec.
Article in English | MEDLINE | ID: covidwho-1587346

ABSTRACT

BACKGROUND: Depression and anxiety are two to four times more prevalent in people with CF (pwCF) than the general population. COVID-19 may exacerbate mental health challenges, increasing demand for psychological services, while decreasing their availability. We assessed the impact of the pandemic on depression and anxiety in pwCF, including how COVID-19 affected the frequency of mental health screening and the types of services provided. METHODS: A 38-item internet survey, completed in June 2020, assessed how COVID-19 affected: 1) the mental health clinician's role and screening processes; 2) barriers to screening and resource needs; 3) impact of COVID-19 on depression and anxiety, and 4) positive outcomes and confidence in sustaining mental health screening and treatment, including telehealth services, after the pandemic. RESULTS: Responses were obtained from 131 of the 289 US CF programs. Overall, 60% of programs (n=79) continued mental health screening and treatment, although less frequently; 50% provided individual tele-mental health interventions, and 9% provided telehealth group therapy. Clinically elevated depression symptoms (PHQ-9≥10; moderate to severe), were found in 12% of 785 pwCF, with 3.1% endorsing suicidal ideation. Similarly, elevated anxiety (moderate to severe; GAD-7≥10) was found in 13% of pwCF (n=779). CONCLUSIONS: The COVID-19 pandemic created an opportunity to implement innovative solutions to disruptions in mental health screening and treatment in CF programs. We found that pwCF had increased access to psychological interventions during the pandemic via telehealth, supporting the continued integration of tele-mental health screening and treatment into CF care.


Subject(s)
Anxiety , COVID-19 , Cystic Fibrosis , Depression , Mental Health , Psychosocial Intervention , Telemedicine , Anxiety/diagnosis , Anxiety/physiopathology , Anxiety/therapy , COVID-19/epidemiology , COVID-19/prevention & control , COVID-19/psychology , Cystic Fibrosis/epidemiology , Cystic Fibrosis/psychology , Cystic Fibrosis/therapy , Delivery of Health Care/methods , Delivery of Health Care/trends , Depression/diagnosis , Depression/physiopathology , Depression/therapy , Health Services Accessibility/standards , Health Services Accessibility/statistics & numerical data , Humans , Mass Screening/methods , Needs Assessment , Psychosocial Intervention/methods , Psychosocial Intervention/trends , Psychosocial Support Systems , SARS-CoV-2 , Surveys and Questionnaires , Telemedicine/methods , Telemedicine/organization & administration , United States/epidemiology
6.
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
8.
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
9.
J Cyst Fibros ; 20 Suppl 3: 57-63, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587342

ABSTRACT

BACKGROUND: Cystic fibrosis (CF) programs and people with CF (PwCF) employed various monitoring methods for virtual care during the COVID-19 pandemic. This paper characterizes experiences with remote monitoring across the U.S. CF community. METHODS: The CF Foundation (CFF) sponsored distribution of home spirometers (April 2020 to May 2021), surveys to PwCF and CF programs (July to September 2020), and a second program survey (April to May 2021). We used mixed methods to explore access, use, and perspectives regarding the use of remote monitoring in future care. RESULTS: By October 2020, 13,345 spirometers had been distributed, and 19,271 spirometers by May 2021. Programs (n=286) estimated proportions of PwCF with home devices increased over seven months: spirometers (30% to 70%), scales (50% to 70%), oximeters (5% to 10%) with higher estimates in adult programs for spirometers and oximeters. PwCF (n=378) had access to scales (89%), followed by oximeters (48%) and spirometers (47%), often using scales and oximeters weekly, and spirometers monthly. Over both surveys, some programs had no method to collect respiratory specimens for cultures associated with telehealth visits (47%, n=132; 41%, n=118). Most programs (81%) had a process for phlebotomy associated with a telehealth visit, primarily through off-site labs. Both PwCF and programs felt future care should advance remote monitoring and recommended improvements for access, training, and data collection systems. CONCLUSIONS: PwCF and programs experienced unprecedented access to remote monitoring and raised its importance for future care. Improvements to current systems may leverage these shared experiences to augment future care models.


Subject(s)
COVID-19 , Cystic Fibrosis , Equipment and Supplies/supply & distribution , Home Care Services , Monitoring, Physiologic/methods , Spirometry , Adult , COVID-19/epidemiology , COVID-19/prevention & control , Child , Cystic Fibrosis/diagnosis , Cystic Fibrosis/epidemiology , Cystic Fibrosis/therapy , Delivery of Health Care/organization & administration , Delivery of Health Care/trends , Health Services Accessibility/organization & administration , Health Services Accessibility/standards , Home Care Services/organization & administration , Home Care Services/standards , Humans , Models, Organizational , Needs Assessment , Oximetry/instrumentation , Oximetry/methods , Quality Improvement , SARS-CoV-2 , Spirometry/instrumentation , Spirometry/methods , Telemedicine/methods , Telemedicine/standards , United States/epidemiology
10.
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
11.
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
12.
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
13.
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
14.
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
15.
Thorax ; 77(3): 295-297, 2022 03.
Article in English | MEDLINE | ID: covidwho-1515319

ABSTRACT

Reducing treatment burden in cystic fibrosis (CF) is the top research priority for patients and clinicians. Difficulty accessing medication is one aspect of treatment burden. We investigated this with an online survey available globally for patients with CF and healthcare professionals. Almost three quarters of patients with CF in our survey report difficulty getting repeat prescriptions on time, and most community pharmacists experience interrupted supplies of CF-specific medications. These barriers affect emotional and physical health of people with CF. Two-thirds of people with CF would like to get all their CF medication from one place, their CF centre.


Subject(s)
Cystic Fibrosis , Cystic Fibrosis/therapy , Humans , Pharmacists , Surveys and Questionnaires
16.
J Cyst Fibros ; 21(2): e106-e112, 2022 03.
Article in English | MEDLINE | ID: covidwho-1509959

ABSTRACT

BACKGROUND: Patients with cystic fibrosis (CF) are considered to be a COVID-19 risk group. In March 2020, a fast-track Patient Reported Outcome (PRO) solution was developed to ensure access to CF care without in-person hospital visits. This study investigated the feasibility of urgently replacing in-person appointments with remote monitoring using telephone consultations combined with PROs. We investigated patients and health care professionals' (HCPs) acceptance, recruitment rate, response rate, missing data, and attrition. METHODS: We included adult CF patients from the Department of Infectious Diseases at Aarhus University Hospital, Denmark between April and June 2020. Patients filled in a disease-specific questionnaire including relevant clinical aspects, performed home spirometry, and sent in a sputum sample before a scheduled telephone consultation. Twelve participants who completed the questionnaire and had a telephone consultation were interviewed. Three physicians and three nurses from the CF clinical team participated in a focus group interview. RESULTS: Eighty patients were recruited for remote monitoring, and 41 patients filled in at least one questionnaire. Overall, both patients and HCPs found remote monitoring and use of PROs acceptable and useful. Patients experienced greater flexibility and found the questionnaire relevant and understandable but pointed out the need for items regarding mental health status and more adequate information about changes in follow-up and workflow. CONCLUSION: Urgent reorganization of outpatient follow-up among CF patients due to COVID-19 was feasible in routine clinical practice. However, patient involvement should be a future point of attention to ensure a sustainable telehealth PRO solution.


Subject(s)
COVID-19 , Cystic Fibrosis , Adult , COVID-19/epidemiology , Cystic Fibrosis/complications , Cystic Fibrosis/epidemiology , Cystic Fibrosis/therapy , Denmark/epidemiology , Feasibility Studies , Follow-Up Studies , Humans , Patient Reported Outcome Measures , Referral and Consultation , Telephone
17.
BMJ Open Qual ; 10(4)2021 10.
Article in English | MEDLINE | ID: covidwho-1462980

ABSTRACT

Cystic fibrosis (CF) is a genetic, life-limiting disease without a cure; treatment is complex and lifelong. Respiratory failure is the most common cause of death; however, gastrointestinal disease, diabetes and liver disease are common comorbidities. Coronavirus disease (COVID-19) rapidly changed healthcare services across the globe, including redeployment of healthcare professionals. This adult CF service was challenged to continue a patient facing service within severe staffing and structural limitations.Not only were many members of the CF multidisciplinary team (MDT) redeployed at the start of the first wave, but also both the CF and ambulatory care wards were closed. Fortunately, the CF clinical nurse specialists (CF-CNSs) remained in their role. Rapid change and adaptation of the CF service was required to ensure that patients did not feel abandoned and access to treatment remained available. The role of the CF-CNS was therefore pivotal in this change.The aim of this project was to use quality improvement methodology to plan an emergency service allowing a reintroduction of ambulatory care services. Success was measured by the number of patients clinically reviewed with or without intervention, and the reasons for patients contacting the CF-CNS via email and phone were recorded.In weeks 1 and 2 of the emergency service, the CF-CNSs triaged patients by phone, then reviewed face-to-face when necessary. This first step allowed the CF-CNSs to start two patients on home intravenous antibiotics. This service continued to be developed over the following 12 weeks, leading to a total of 36 patient attendances. In March 2020, n=1187 patients made contact (mostly COVID-19, unwell and medication related), in April n=904 and May n=870 (blood test results, unwell and medication related).The motivation of the CF-CNSs was pivotal to the success of this initiative with the CF MDT available to provide some support and advice. It concluded at week 12, which then saw the opening of the formal ambulatory care ward and returning redeployed ward staff.


Subject(s)
COVID-19 , Cystic Fibrosis , Nurse Clinicians , Adult , Ambulatory Care , Cystic Fibrosis/epidemiology , Cystic Fibrosis/therapy , Humans , SARS-CoV-2
18.
Respir Med ; 188: 106606, 2021 11.
Article in English | MEDLINE | ID: covidwho-1401832

ABSTRACT

BACKGROUND: In this study, we report clinical outcomes in COVID-19 infection in a large cohort of people with cystic fibrosis (pwCF) and compare these outcomes to a propensity score matched cohort of people without CF. METHODS: Analysis of a multicenter research network TriNETX was performed including patients more than 16 years of age diagnosed with COVID-19. Outcomes in COVID-19 positive pwCF were compared with a propensity-matched cohort of people without CF. RESULTS: A total of 507,810 patients with COVID-19 were included (422 patients, 0.08% with CF; 507,388 patients, 99.92% without CF. Mean age at COVID-19 diagnosis in CF cohort was 46.6 ± 19.3 years, with female predominance (n = 225, 53.32%). Majority of the participants were Caucasian (n = 309, 73.22%). In the crude, unmatched analysis, mortality, hospitalization, critical care need, mechanical ventilation, acute kidney injury and composite (combination of intubation and mortality) outcome at 30 days was higher in the pwCF. Following robust propensity matching, pwCF had higher hospitalization rate (RR 1.56, 95% CI 1.20-2.04), critical care need (RR 1.78, 95% CI 1.13-2.79), and acute renal injury (RR 1.60, 95% CI 1.07-2.39) as compared to patients without CF. CONCLUSION: People with CF are at risk of poor outcomes with COVID-19.5.2% of these patients died within one month of COVID-19 diagnosis, and more than one in 10 patients required critical care. Therefore, the relatively young median age of cystic fibrosis patients, and lower prevalence of obesity do not protect these patients from severe disease contrary to prior reports.


Subject(s)
COVID-19/complications , COVID-19/mortality , Cystic Fibrosis/complications , Adult , Aged , COVID-19/therapy , Critical Care , Cystic Fibrosis/mortality , Cystic Fibrosis/therapy , Female , Hospitalization , Humans , Kaplan-Meier Estimate , Male , Middle Aged , Propensity Score , Respiration, Artificial , Retrospective Studies , Survival Rate
19.
BMJ Open Qual ; 10(3)2021 08.
Article in English | MEDLINE | ID: covidwho-1373969

ABSTRACT

IntroductionThe Cystic Fibrosis (CF) Foundation chronic care guidelines recommend monitoring spirometry during quarterly multidisciplinary visits to identify early lung function decline. During the COVID-19 pandemic, the CF adult clinic at University of Virginia (UVA) transitioned from the classic CF care model to a model that included quarterly multidisciplinary telemedicine visits. While using telemedicine, CF care needed to include spirometry monitoring. Only a fraction of adult CF patients at UVA owned and used home spirometers (HS) in March 2020. AIM: The specific aims of this quality improvement (QI) project were to increase the percentage of eligible adult CF patients who owned an HSs from 37% to 85% and to increase the percentage of adult CF patients seen at UVA with available spirometry in telemedicine from 50% to 95% by 31 December 2020. METHODS: Following the Model for Improvement QI methodology, a standardised process was developed for monitoring forced expiratory volume in 1 s with HS during multidisciplinary telemedicine visits during the COVID-19 pandemic. INTERVENTION: (1) HSs were distributed to eligible patients and (2) Home spirometry was monitored in eligible patients with each telemedicine visit and results were used for clinical care decisions. RESULTS: Both specific aims were achieved ahead of expected date. In March 2020, the beginning of the pandemic, 37% (49/131) of patients owned an HS and 50% (9/18) of patients seen via telemedicine performed spirometry at home. By September 2020, 97% (127/131) of adult patients at UVA owned an HS and by October 2020, 96% (24/25) of patients provided spirometry results during their telemedicine encounters. CONCLUSION: Employing QI tools to standardise the process of monitoring spirometry data with home devices via telemedicine is reliable and sustainable and can be replicated across centres that provide care for patients with CF.


Subject(s)
COVID-19 , Cystic Fibrosis , Telemedicine , Adult , Cystic Fibrosis/diagnosis , Cystic Fibrosis/epidemiology , Cystic Fibrosis/therapy , Humans , Pandemics , Quality Improvement , SARS-CoV-2 , Spirometry
20.
Curr Opin Pulm Med ; 27(6): 544-553, 2021 11 01.
Article in English | MEDLINE | ID: covidwho-1371767

ABSTRACT

PURPOSE OF REVIEW: At many institutions, the Covid-19 pandemic made it necessary to rapidly change the way services are provided to patients, including those with cystic fibrosis (CF). The purpose of this review is to explore the past, present and future of telehealth and virtual monitoring in CF and to highlight certain challenges/considerations in developing such services. RECENT FINDINGS: The Covid-19 pandemic has proven that telehealth and virtual monitoring are a feasible means for safely providing services to CF patients when traditional care is not possible. However, both telehealth and virtual monitoring can also provide further support in the future in a post-covid era through a hybrid-model incorporating traditional care, remote data collection and sophisticated platforms to manage and share data with CF teams. SUMMARY: We provide a detailed overview of telehealth and virtual monitoring including examples of how paediatric and adult CF services adapted to the need for rapid change. Such services have proven popular with people with CF meaning that co-design with stakeholders will likely improve systems further. In the future, telehealth and virtual monitoring will become more sophisticated by harnessing increasingly powerful technologies such as artificial intelligence, connected monitoring devices and wearables. In this review, we harmonise definitions and terminologies before highlighting considerations and limitations for the future of telehealth and virtual monitoring in CF.


Subject(s)
COVID-19 , Cystic Fibrosis , Telemedicine , Adult , Artificial Intelligence , Child , Cystic Fibrosis/therapy , Humans , Pandemics , SARS-CoV-2
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