Patient and family experience of telehealth care delivery as part of the CF chronic care model early in the COVID-19 pandemic

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.

A year in review: Real world evidence, functional monitoring and emerging therapeutics in 2021

“…A widespread surge in ‘tele’ or digital health has occurred [ 6 , 7 ]. In general, this has been reasonably successfully implemented and accepted by PwCF and care providers, particularly adults [8] , [9] , [10] , [11] , [12] . Health care providers and PwCF have adapted to home spirometry, remote microbiological sample collection, blood monitoring and video consultants well [ 7 , 10 , 13 ].…”

“…Over half of adults and parents/carers for PwCF express concerns about lack of in-person assessments such as lung function and microbiological testing [10] . Other disadvantages include the lack of ability to perform a physical examination, difficulties in microbiological surveillance, and the loss of subtleties in communication that may get lost without face to face contact, particularly where there is a language barrier [ 7 , [9] , [10] , [11] , [12] , [14] , [15] , [16] ]. Pediatric teams and parents have been less likely to advocate for remote consultations and have raised concerns regarding monitoring adherence, safeguarding issues, and engaging teenagers [ 8 , 9 , 12 , 14 ].…”

“…Other disadvantages include the lack of ability to perform a physical examination, difficulties in microbiological surveillance, and the loss of subtleties in communication that may get lost without face to face contact, particularly where there is a language barrier [ 7 , [9] , [10] , [11] , [12] , [14] , [15] , [16] ]. Pediatric teams and parents have been less likely to advocate for remote consultations and have raised concerns regarding monitoring adherence, safeguarding issues, and engaging teenagers [ 8 , 9 , 12 , 14 ]. Disparities in high speed internet access and technology may create a ‘digital divide' [ 9 , 12 , 17 ].…”

“…Pediatric teams and parents have been less likely to advocate for remote consultations and have raised concerns regarding monitoring adherence, safeguarding issues, and engaging teenagers [ 8 , 9 , 12 , 14 ]. Disparities in high speed internet access and technology may create a ‘digital divide' [ 9 , 12 , 17 ]. Whilst the surge in telehealth has subsided and confidence in returning to face to face visits has grown, in person consultations will probably not return to pre pandemic levels [ 6 , [10] , [11] , [12] , [13] , [14] ].…”

“…Disparities in high speed internet access and technology may create a ‘digital divide' [ 9 , 12 , 17 ]. Whilst the surge in telehealth has subsided and confidence in returning to face to face visits has grown, in person consultations will probably not return to pre pandemic levels [ 6 , [10] , [11] , [12] , [13] , [14] ]. Health care delivery has evolved and there is much work to do with evaluation and implementation of new hybrid models that address the individual needs of PwCF.…”