The initial survey completed in August 2020 had 110 respondents. The follow-up survey completed in April 2021 had 124 respondents. Details of the contents of the surveys are included in Table 1. All respondents in the initial survey originated from the UK and Ireland with 85 (77%) living in England. Of these, 80 (73%) were individuals with OI and the remainder were a combination of parents, carers, and other relatives. The follow-up survey completed in April 2021 had 124 respondents, 96 (74%) from the UK and Ireland, with the majority, 79 (64%), from England. The remainder livedin Europe, South Africa, India, and the USA. Of these, 104 (84%) respondents were individuals with OI; 15 (12%) were parents of a child with OI, and 5 (4%) were carers (Table 2).
Theme 1: Effects On Therapy
Of the 110 responses to the original 2020 survey, 69 (63%) participants had appointments postponed due to the lock-down, and of these 19 (28%) had more than one appointment postponed. Fifty-two reported a delay in a consultation, 22 had treatments deferred, and six had a surgery postponed (Fig.1.). Of the 62 respondents who gave specific feedback on how these postponements had impacted their care, the five identified themes were: delays in treatments/ investigations (21 responses, 34%), adverse effects on health or increased pain (20 responses, 32%), anxiety and frustration (10 responses, 16%), and suitable arrangements were made or caused minimal effect on care (11 response, 18%). Of the 22 paediatric patients amongst this cohort, five (23%) had their transition to adult services impacted. Ten of the 38 respondents (26%) requiring a wheelchair assessment were unable to have this due to the lock-down. Twenty-eight of the 54 respondents (52%) who required rehabilitation (i.e., post surgery or following a fracture) were unable to have this, with 15 of these mentioning lack of in-person physiotherapy being their main concern. Of the 39 respondents who had educational requirements during COVID-19, 23 (59%) felt the lock-down affected their links with educational services.
Of the 124 respondents to the follow-up 2021 survey, 89 (72%) had appointments postponed due to the lockdown, of these 36 (40%) had more than one appointment postponed. Twenty-two respondents (18%) had a surgical procedure postponed or cancelled, 30 respondents (24%) had imaging delayed/cancelled, 19 (15%) had day unit treatment postponed/cancelled, 63 (51%) had an appointment with an allied healthcare professional cancelled/postponed, and 64 (52%) had an appointment with a specialist delayed or cancelled (Fig.2.). Twenty-five respondents had not been given a new date for their medical appointment at the time of the survey (32%). For the postponed surgical procedures 12 (48%) of respondents with delayed appointments have not been assigned a new date for their postponed procedure at the time of the survey. Of the 124 participants, 29 (23%) required regular support or personal assistance at home. Four of these (14%) had their hours of care completely cut, four (14%) had the majority of their hours cut, six (21%) had some of their hours cut, the remainder (15, 52%) experienced no change in their hours of support.
Theme 2: Alternatives to consultation
Of the 110 respondents in the 2020 survey, 57 (52%) received remote consultations during the lockdown. For 51 (89%) respondents this was their first experience of remote consultation. The majority of these were telephone consultations (43 responses, 75%), eight (14%) were via video consultation, and the remaining six (11%) were a combination of both (Fig.3.). Experience with remote consultations was rated as excellent by 15 (26%), very good by 13 (23%), good by 17 (30%), not good by 7 (12%) and poor by 5 (9%). When asked about future preference, 43 out of the 90 (48%) respondents to this section answered they would like to have a remote consultation in the future. Of the 57 who had a remote consultation, areas for improvement that were reported included the choice of type of consultation by 9 (27%), lack of examinations and blood tests by 6 (18%) and not being given a time for the phone call by 4 (12%). Of the 124 respondents in the 2021 survey, 92 (74%) respondents had received a remote consultation/appointment. Of the 92, telephone consultations were performed in 61 (66%), video in 6 (7%), and a combination in 25 (27%) (Fig.3.). When asked about future preference, 23 respondents (19%) said they would like to see more remote consultations, and 64 respondents (52%) said they prefer remote consultations but not for every appointment.
Theme 3: Effect on mental health and lifestyle
In the 2020 survey, respondents were asked how COVID-19 affected them. The following themes were identified: shielding and isolation (n=24); anxiety about leaving the house (n=18); inability to obtain equipment/treatment (n=12); reluctance to seek medical attention/ longer waits (n=9); reduction in ability to exercise (n=8); and financial hardship (n=2). When asked specifically how the lockdown had affected their mental health, of the 91 respondents, 63 (69%) expressed increased anxiety and depression, 12 (13%) expressed concerns at not seeing friends and family, and two (2%) struggled with not being physically active. Seven (8%) respondents reported no change in their mental health due to lockdown, and six (7%) reported a positive change in their mental health. In the 2021 survey when asked how the lockdown affected participants, of the 124 respondents, 55 (44%) struggled moderately to significantly with weight and diet; 70 (56%) struggled moderately to significantly with mobility; 76 (61%) struggled moderately to significantly with anxiety/mental health; 103 (83%) struggled moderately to significantly with not seeing friends and family; 71 (57%) struggled moderately to significantly with pain; and 89 (72%) struggled moderately to significantly with keeping physically active. For the 29 participants with carers, 22 (76%) struggled moderately to significantly with anxiety and mental health, when compared to those who did not have carers, 54 (44%) struggled moderately to significantly with anxiety/mental health. In the 2020 survey, of the 98 respondents, 70 (63%) felt the BBS updates were very good or excellent. In the 2021 questionnaire, when asked if the BBS updates were helpful, of the 119 respondents, 69 (72%) felt they were either extremely helpful or somewhat helpful.
Theme 4: Perceived risks of COVID-19
When asked about their general state of health in the 2021 survey, of 124 participants, 37 (30%) felt their general health was excellent or very good, and 11 (9%) of respondents felt their overall health was poor. Thirty-four respondents (27%) had received an official letter from the healthcare provider advising them they were at risk of severe COVID19 related illness because of an underlying health condition, whilst 69 (56%) self-identified as having an underlying health condition that would make them clinically vulnerable if they caught COVID-19. Of the 63 who did not receive a letter, the reasons were: 25 (40%) had not been identified as at risk (i.e.had mild OI); 13 (21%) were unsure if they were in the at risk group but did not feel the need to register; and 9 (14%) were unsure if they should be in the at risk group but did not have access to healthcare. Of the 124 respondents, 76 (61%) had been tested for COVID-19 – 22 (29%) had severe OI; 25 (33%) had moderate OI; 27 (%) had mild disease and two (36%) were unsure of the type of OI they had. Of these, seven (9%) were positive, three of these had severe disease, two had moderate disease and two had mild disease. Three respondents of 121 (2%) were admitted to hospital due to having contracted COVID-19. Of the 117 who responded to the question regarding contracting COVID-19, 81 (69%) participants felt they would be clinically more difficult to treat than someone who does not have an underlying health condition, whilst 25 (21%) were unsure. Of the 120 who were asked about recovery from COVID-19, 77 (64%) felt it would take them longer than someone without an underlying health condition to recover, whilst 24 (20%) were unsure. When asked for further comments on recovery, 27 participants responded in total. Six respondents mentioned fear of rib fractures, from coughing or in hospital care, three mentioned that healthcare professionals have said their risk of death is high, and two mentioned fear of not being accepted into ICU or not being prioritised for care due to their disability. Due to perceived fear of COVID-19, of the 124 participants 58 (47%) postponed their own appointments, 54 (44%) said they had switched or changed aspects of their current therapies to avoid hospital attendance, 25 (20%) reported that they decided not to seek out of hours emergency input at the hospital for a suspected fracture and 66 (53%) had not left their home at all, or for most of the time since March 2020.
In the 2021 survey, of the 123 respondents to this question, 84 (68%) had received the vaccine. Of the 55 participants who have a carer, 40 respondents (73%) of their carers have been vaccinated; and of the 38 parents/family members who responded on behalf of someone with OI 61% had been vaccinated. Of 122 respondents, 86 (70%) reported that they usually get the flu vaccine and of 123 respondents, 29 (25%) reported receiving the pneumonia vaccine. Of the 40 who had not received the COVID vaccine, 25 (63%) had not yet been called up at the time of the survey, 4 (10%) had tried to get it, but had been unsuccessful at being put on a priority list, and for one participant from South Africa, the vaccination was not yet available in their country. When asked if respondents felt their medical needs had been 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 and 21 (19%) felt they had been given due priority, the remainder did not feel this question was applicable to their care.