Patient Reported Experience of Clinical Care of Osteogenesis Imperfecta (OI) During The COVID-19 Pandemic

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 lockdown on individuals with OI (Osteogenesis Imperfecta) across two consecutive years of the pandemic, to understand what challenges were encountered, and to analyse the experience of remote consultation.Methods Two independent surveys were distributed in August 2020 and April 2021. The primary survey was distributed following the first lockdown, and the second survey built on the experiences reported from the initial survey. The surveys explored four key themes- effects on therapy, alternatives to consultation, effect on mental health, and perceived risks of COVID-19.Results In the primary 2020 survey of the 110 respondents 69 (63%) had at least one appointment delayed due to lockdown, increasing to 89 of the 124 respondents (72%) in the follow-up survey. Of the 110 initial survey participants, 57 (52%) had a remote consultation, increasing to 92 of 124 (74%) in the follow-up survey. In the primary survey 63 of 91 (69%) expressed increasing anxiety due to lockdown, compared with 76 of 124 (61%) in the follow-up survey. In the primary survey 12 of 91 respondents (13%) expressed concerns at not seeing friends and family compared with 103 of 124 (83%) in the follow-up survey. In the second survey of 124 participants there were concerns regarding weight and diet (55, 44%), mobility (70, 56%), pain (71, 57%), and keeping physically active (89, 72%). The majority of participants felt they would have a worse illness and require longer rehabilitation than someone without OI (81 of 117 respondents, and 77 of 120 respectively), and the majority of participants (68%) had been vaccinated at the time of the second survey.Conclusions The pandemic has had widespread effects on both the mental and physical health of those with OI. These repercussions are likely to be felt for years to come. On the other hand, the pandemic has also revealed that in certain situations remote consultation may prove a viable long-lasting alternative to face-to-face appointments.