Original Article
Patient and family perceptions of telehealth as part of the cystic fibrosis care model during COVID-19

https://doi.org/10.1016/j.jcf.2021.03.009Get rights and content
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Highlights

  • This survey-based study assessed patient and family experience of telehealth care during the COVID-19 pandemic.

  • Telehealth Care was viewed as feasible, convenient, and satisfactory in the care delivery model for a large proportion of patients and patient families.

  • Barriers to ongoing utilization included lack of in-person assessments technological limitations were not viewed as a barrier by respondents.

  • This study demonstrates patient interest in potential long-term utilization of telehealth in the CF chronic disease care model.

Abstract

Background

Cystic Fibrosis (CF) is a chronic multi-system disease best cared for at Care centers with routine monitoring by interdisciplinary teams. Previously, remote home monitoring technology has been explored to augment in-person care. During the COVID-19 pandemic, traditional in-person care was limited and CF centers rapidly adapted to a telehealth delivery model. The purpose of this study was to understand how people with CF (PwCF) and families of PwCF experienced the shift to telehealthcare delivery.

Methods

This was a cross-sectional survey-based study conducted in 11 CF Centers. Two surveys were designed (one for adult PwCF and one for parents/guardians of PwCF) by participating CF center members with patient and family partner input. Surveys were disseminated electronically via email/text to all patients who completed a telehealth visit, and data were collected on secure Google Forms.

Results

Respondents rated their telehealth experiences as positive. Most were highly satisfied with their telehealth visit (77% adult, 72% pediatric) and found the visits to be highly convenient (85% for all surveyed). A majority of patients reported they had adequate time during the visit and had all questions and concerns addressed. Importantly, we also identified concerns regarding lack of in-person assessments including pulmonary function testing (PFT) and throat/sputum culture.

Conclusion

Telehealth was a feasible and well-accepted mechanism for delivering care in a chronic CF care model during the COVID-19 pandemic and may be useful in the post-pandemic era. Further work is needed to understand the impact of telehealth on patient outcomes, healthcare utilization and associated cost.

Keywords

Telehealth
Survey
Patient outcome
Healthcare delivery

Abbreviations

CF
Cystic Fibrosis
PwCF
People with CF
COVID-19
Novel SARS-CoV-2 coronavirus
PFT
Pulmonary Function Testing

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1

Indicates Authors Contributed equally.