Introduction
The COVID‐19 pandemic caused an unprecedented impact to haemophilia healthcare delivery. In particular, rapid implementation of telehealth solutions was required to ensure continued access to comprehensive care.
Aims
To explore patient and healthcare provider (HCP) experience of telehealth in a European Haemophilia Comprehensive Care Centre.
Method
A systematic evaluation was performed to survey patient and HCP experience and compare clinical activity levels with telehealth to in‐person attendances.
Results
Public health measures implemented in March 2020 to reduce COVID‐19 spread resulted in a 63% decrease in medical/nursing clinic consultation activity compared to the same period in 2019. Implementation of digital care pathways resulted in marked increase in activity (52% greater than 2019). Importantly, enhanced patient engagement was noted, with a 60% reduction in non‐attendance rates. Survey of patients who had participated in medical/nursing teleconsultations demonstrated that teleconsultations improved access (79%), reduced inconvenience (82%), was easy to use (94%) and facilitated good communication with the HCP (97%). A survey exploring the telemedicine experience of HCPs, illustrated that HCPs were satisfied with teleconsultation and the majority (79%) would like to continue to offer teleconsultation as part of routine patient care. In addition to medical/nursing reviews, continued access to physiotherapy with virtual exercise classes for people with haemophilia and teleconsultation for acute dental issues was equally successful.
Conclusion
During an unprecedented public health emergency, telehealth has enabled continued access to specialized haemophilia comprehensive care. Our novel findings show that this alternative is acceptable to both patients and HCPs and offers future novel opportunities.
Introduction: Myositis ossificans (MO) is a condition characterised by the formation of non-neoplastic heterotropic ossification in extraskeletal soft tissues. Material and methods: We performed a retrospective study of our radiology databases within our tertiary orthopaedic centre to identify all cases of MO, reported on X ray, Magnetic resonance imaging (MRI) and Computed tomography (CT) over the past 13 years (2007e2020). Results: We identified 68 cases of MO, which were included into our cohort. The average age of our patients was 36 years (range 4e84 years). 73% of cases (n ¼ 50) were found to affect the lower limb muscles with the majority in the quadriceps.
Conclusion:We report the largest case series of MO and discuss the demographics, diagnoses and management.
BackgroundResearch 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.AimsTo 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.MethodsAn 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.ResultsIn 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.ConclusionsThe 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.
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