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. 2023 Jan 4:10:951569.
doi: 10.3389/fpubh.2022.951569. eCollection 2022.

Patient-reported experience of clinical care of osteogenesis imperfecta (OI) during the COVID-19 pandemic

Debra Smyth  1 , Monica Hytiris  1 , Coreen Kelday  2 , Ciara McDonnell  3 , Christine Burren  4 , Adrian Gardner  5 , Lisa Mills  6 , Susan Parekh  7 , Oliver Semler  8 , Angela Stewart  2 , Ingunn Westerheim  9 , Muhammad Kassim Javaid  10 , Patricia Osborne  2 , S Faisal Ahmed  1
Affiliations

Patient-reported experience of clinical care of osteogenesis imperfecta (OI) during the COVID-19 pandemic

Debra Smyth et al. Front Public Health. .

Abstract

Background: Research on the effects of the COVID-19 pandemic on people with rare diseases is limited. Few studies compare healthcare throughout the progression of the ongoing pandemic.

Aims: To assess the impact of the pandemic on individuals with osteogenesis imperfecta across two consecutive years, understand what challenges were encountered, and analyse the experience of remote consultation.

Methods: An initial survey was distributed following the first lockdown in August 2020, and a second survey in April 2021. The surveys explored four themes- effects on therapy, alternatives to consultation, effect on mental health, and perceived risks of COVID-19.

Results: In the 2020 survey, of the 110 respondents, 69 (63%) had at least one appointment delayed due to the lockdown, compared with 89 of the 124 respondents (72%) in 2021. Of the 110 respondents in 2020, 57 (52%) had a remote consultation, increasing to 92 of 124 (74%) in the follow-up survey. In the 2020 survey 63 of 91 respondents (69%) expressed anxiety due to lockdown, compared with 76 of 124 (61%) in 2021. The percentage of total respondents expressing a preference for remote consultation was 48% in 2020, increasing to 71% in 2021.

Conclusions: The pandemic has had widespread effects on the mental and physical health of those with OI. These effects, alongside appointment delays, have increased as the pandemic progresses. Encouragingly, the increasing preference for remote consultation may indicate that this could be a viable long-lasting alternative to face-to-face appointments, especially for patients who previously traveled vast distances for specialist care.

Keywords: COVID-19; osteogenesis imperfecta (OI); pandemic; rare conditions; rare diseases; remote consultation.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

Figure 1
Figure 1
Type of consultation from 2020 to 2021. Comparison of consultation types from 2020 to 2021 survey. Overall, there were 57 remote consultations amongst 110 respondents in 2020 and 92 amongst 124 respondents in 2021. In the primary survey, 43 respondents had telephone consultations, compared with 61 in the 2021 survey. Eight respondents had a video consultation in 2020 and a further six in 2021. Six participants had a combination of video and telephone consultations in 2020 and a further 25 in the 2021 survey.
Figure 2
Figure 2
How respondents felt their medical needs were considered during the vaccine rollout. Of the 113 respondents to this question, 30 (27%) felt like they had been ignored, 29 (26%) felt they had not been given adequate consideration, 21 (19%) felt they had been given good consideration, 21 (19%) felt they had been given due priority, and the remainder did not feel this question was applicable to their care.
See this image and copyright information in PMC

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