RESUMO
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.
Assuntos
COVID-19 , Fibrose Cística , Prestação Integrada de Cuidados de Saúde/organização & administração , Atenção à Saúde/tendências , Telemedicina , COVID-19/epidemiologia , COVID-19/prevenção & controle , Controle de Doenças Transmissíveis/métodos , Continuidade da Assistência ao Paciente , Fibrose Cística/epidemiologia , Fibrose Cística/terapia , Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/tendências , Humanos , Inovação Organizacional , SARS-CoV-2 , Telemedicina/organização & administração , Telemedicina/normas , Estados Unidos/epidemiologiaRESUMO
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.
Assuntos
COVID-19 , Continuidade da Assistência ao Paciente , Fibrose Cística , Acessibilidade aos Serviços de Saúde , Modelos Organizacionais , Telemedicina , Adulto , COVID-19/epidemiologia , COVID-19/prevenção & controle , Criança , Continuidade da Assistência ao Paciente/organização & administração , Continuidade da Assistência ao Paciente/normas , Custos e Análise de Custo , Fibrose Cística/economia , Fibrose Cística/epidemiologia , Fibrose Cística/terapia , Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/tendências , Necessidades e Demandas de Serviços de Saúde , Humanos , Inovação Organizacional , Admissão e Escalonamento de Pessoal/organização & administração , Mecanismo de Reembolso/tendências , SARS-CoV-2 , Telemedicina/economia , Telemedicina/métodos , Estados Unidos/epidemiologiaRESUMO
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.
Assuntos
COVID-19 , Barreiras de Comunicação , Fibrose Cística , Transmissão de Doença Infecciosa/prevenção & controle , Acessibilidade aos Serviços de Saúde , Participação do Paciente , Telemedicina , Adulto , Atitude do Pessoal de Saúde , COVID-19/epidemiologia , COVID-19/prevenção & controle , Criança , Fibrose Cística/epidemiologia , Fibrose Cística/psicologia , Fibrose Cística/terapia , Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/tendências , Humanos , Avaliação das Necessidades , Participação do Paciente/métodos , Participação do Paciente/psicologia , Pesquisa Qualitativa , Melhoria de Qualidade , Mecanismo de Reembolso , SARS-CoV-2 , Telemedicina/economia , Telemedicina/métodos , Telemedicina/normas , Estados Unidos/epidemiologiaRESUMO
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.
Assuntos
COVID-19 , Fibrose Cística , Acessibilidade aos Serviços de Saúde , Telemedicina , Adulto , COVID-19/epidemiologia , COVID-19/prevenção & controle , Criança , Controle de Doenças Transmissíveis/métodos , Barreiras de Comunicação , Continuidade da Assistência ao Paciente , Custos e Análise de Custo , Fibrose Cística/epidemiologia , Fibrose Cística/psicologia , Fibrose Cística/terapia , Feminino , Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/tendências , Humanos , Masculino , Inovação Organizacional , Satisfação do Paciente/estatística & dados numéricos , Qualidade da Assistência à Saúde , SARS-CoV-2 , Telemedicina/organização & administração , Telemedicina/normas , Estados Unidos/epidemiologiaRESUMO
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.
Assuntos
COVID-19 , Barreiras de Comunicação , Comportamento do Consumidor/estatística & dados numéricos , Fibrose Cística , Transmissão de Doença Infecciosa/prevenção & controle , Telemedicina , Adulto , COVID-19/epidemiologia , COVID-19/prevenção & controle , Criança , Fibrose Cística/epidemiologia , Fibrose Cística/psicologia , Fibrose Cística/terapia , Saúde da Família , Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/tendências , Humanos , Modelos Organizacionais , Participação do Paciente/métodos , Participação do Paciente/psicologia , Pediatria/métodos , Pediatria/tendências , Melhoria de Qualidade , Qualidade da Assistência à Saúde/tendências , SARS-CoV-2 , Telemedicina/métodos , Telemedicina/organização & administração , Telemedicina/normas , Estados Unidos/epidemiologiaRESUMO
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.
Assuntos
COVID-19 , Barreiras de Comunicação , Fibrose Cística , Transmissão de Doença Infecciosa/prevenção & controle , Acessibilidade aos Serviços de Saúde , Participação do Paciente , Telemedicina , Adulto , COVID-19/epidemiologia , COVID-19/prevenção & controle , Criança , Fibrose Cística/epidemiologia , Fibrose Cística/psicologia , Fibrose Cística/terapia , Feminino , Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/tendências , Humanos , Acesso à Internet , Masculino , Avaliação das Necessidades , Participação do Paciente/métodos , Participação do Paciente/psicologia , Satisfação do Paciente/estatística & dados numéricos , Melhoria de Qualidade , SARS-CoV-2 , Telemedicina/métodos , Telemedicina/organização & administração , Telemedicina/normas , Estados Unidos/epidemiologiaRESUMO
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.
Assuntos
COVID-19 , Barreiras de Comunicação , Fibrose Cística , Saúde das Minorias , Telemedicina , COVID-19/epidemiologia , COVID-19/prevenção & controle , Controle de Doenças Transmissíveis/métodos , Fibrose Cística/economia , Fibrose Cística/etnologia , Fibrose Cística/psicologia , Fibrose Cística/terapia , Estresse Financeiro/etnologia , Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/tendências , Disparidades em Assistência à Saúde/etnologia , Disparidades em Assistência à Saúde/normas , Humanos , Saúde das Minorias/etnologia , Saúde das Minorias/normas , Saúde das Minorias/estatística & dados numéricos , Avaliação das Necessidades , Inovação Organizacional , SARS-CoV-2 , Fatores Socioeconômicos , Telemedicina/organização & administração , Telemedicina/normas , Estados Unidos/epidemiologia , Populações Vulneráveis/estatística & dados numéricosRESUMO
Cystic fibrosis (CF) is a complex genetic, multiorgan disease. The CF Foundation (CFF) recommends a multidisciplinary team (physician, nurse, respiratory therapist, dietitian, physical therapist, social worker, mental health coordinator, clinic coordinator, and pharmacist) to work with patients and families. The objective of our study was to describe the impact of a pharmacist involved in the care of patients and families from their perspective. The CF Patient and Family Experience of Care (PFEC) is a voluntary, 50-question telephonic or internet-based survey designed to continuously collect information from patients and their families regarding their care experience. From August of 2017 through February of 2018, five questions were added to the internet survey to assess the impact of the pharmacist on the care experience. From the 666 respondents, 54% reported that a pharmacist was involved in their CF care. At two CF clinics designated as "full access" to a pharmacist, respondents reported a higher percentage of the CF-team discussed medications compared to those from three clinics designated as "limited access" to the pharmacist (95% vs 67%). Respondents in clinics with "full access" to a pharmacist were significantly more likely to get their medications refilled on time (78% vs 63%) and reported using fewer pharmacies to fill their medications. Pharmacist involvement in CF care may improve patient's access to medication and the ability to sustain use.
Assuntos
Fibrose Cística/tratamento farmacológico , Equipe de Assistência ao Paciente , Farmacêuticos , Papel Profissional , Acreditação , Família , Feminino , Fundações , Instalações de Saúde , Administração de Instituições de Saúde , Humanos , Masculino , Assistência Farmacêutica , Inquéritos e QuestionáriosRESUMO
Benchmarking is the process of using outcome data to identify high-performing centres and determine practices associated with their outstanding performance. The US Cystic Fibrosis Foundation (CFF) Patient Registry contains centre-specific outcomes data for all CFF-certified paediatric and adult cystic fibrosis (CF) care programmes in the USA. The CFF benchmarking project analysed these registry data, adjusting for differences in patient case mix known to influence outcomes, and identified the top-performing US paediatric and adult CF care programmes for pulmonary and nutritional outcomes. Separate multidisciplinary paediatric and adult benchmarking teams each visited 10 CF care programmes, five in the top quintile for pulmonary outcomes and five in the top quintile for nutritional outcomes. Key practice patterns and approaches present in both paediatric and adult programmes with outstanding clinical outcomes were identified and could be summarised as systems, attitudes, practices, patient/family empowerment and projects. These included: (1) the presence of strong leadership and a well-functioning care team working with a systematic approach to providing consistent care; (2) high expectations for outcomes among providers and families; (3) early and aggressive management of clinical declines, avoiding reliance on 'rescues'; and (4) patients/families that were engaged, empowered and well informed on disease management and its rationale. In summary, assessment of practice patterns at CF care centres with top-quintile pulmonary and nutritional outcomes provides insight into characteristic practices that may aid in optimising patient outcomes.