UK Survey Highlights ‘Unrelenting’ COVID-19 Impact on PF Community

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The global COVID-19 pandemic has had a negative local impact on healthcare for most people in the U.K. with pulmonary fibrosis (PF), who have seen their medical appointments canceled, their pulmonary rehabilitation programs halted, and their health status decline as a result of lockdowns and other safety measures, a survey of patients and caregivers has found.

“COVID-19 has had an unrelenting impact across the Pulmonary Fibrosis (PF) community from long term PF patients, right through to those facing an imminent diagnosis,” the Pulmonary Fibrosis Trust, which conducted the study, said in a press release.

“The long-lasting impact of COVID-19 is yet to unfold, but emerging data is already revealing that Pulmonary Fibrosis could be a long-term respiratory consequence of COVID-19,” the Trust said.

Data from the survey is now available online.

The ongoing pandemic has had a profound impact on people worldwide with PF, according to reports from patients, caregivers, clinicians, and researchers. The long-term impact of the virus itself on PF, including its possible effects on lung tissue scarring (fibrosis), will require time to be fully understood. Yet, evidence pointing to the possibility that PF might be a long-term consequence of COVID-19 has already started to emerge.

For now, COVID-19 is significantly, and negatively, impacting the lives of people with PF in the U.K., due to the disruptions the resulting lockdowns and social distancing measures have had on the country’s healthcare system.

This disruption was reflected in the survey, in which 82.9% of respondents said they had medical appointments that were canceled due to COVID-19, and nearly half (49.3%) claimed their health had worsened as a result of these missed appointments.

Furthermore, over a third (37.2%) said their pulmonary rehabilitation programs, which typically include exercises and education to improve lung function, had been suspended since the start of the pandemic — with no alternative offered.

“Pulmonary rehabilitation is an essential part of managing pulmonary fibrosis and other lung diseases,” said Kim Verry, a clinical specialist, respiratory physiotherapist, and adviser to the Pulmonary Fibrosis Trust.

“Exercise and education programmes help patients to improve management of their breathlessness and symptoms. Without it, there can be a decline in their quality of life,” Verry said.

Verry noted that these PF programs may prove helpful for people who are recovering from the virus itself, further emphasizing how a lack of services could be problematic.

As a result of the pandemic, many people have experienced increased feelings of isolation and insecurity. Since those with conditions like PF may be at increased risk of contracting COVID-19, the mental health impact of the pandemic is likely to fall particularly hard on them. This also was reflected in the survey findings, which showed that 44% of patients and carers did not feel safe leaving their home after the shielding imposed by the U.K. government had ended.

The survey also highlighted how challenging it can be to receive a proper PF diagnosis, especially during the pandemic. Nearly half (48.3%) of respondents said it took over six months for them to being diagnosed, and more than a quarter (29%) said it took more than a year.

Additionally, nearly half of the respondents (41%) said their condition was originally misdiagnosed, and the vast majority (87%) said they had never heard of PF before being diagnosed.

Based on the survey’s findings, the Pulmonary Fibrosis Trust is calling for more education on PF to be offered to healthcare professionals and the general public. The Trust also said there should be universal access to pulmonary rehabilitation and practical equipment.

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