Impact of the COVID-19 pandemic on patients with osteogenesis imperfecta

OBJECTIVES: On March 11, 2020, the WHO classified COVID-19 as a global pandemic. Measures to quell the pandemic included limiting non-essential activities including clinic visits and procedures. It is unclear if individuals with OI had disruptions in their access to healthcare or medications, and if such disruptions affected patients' symptoms. METHOD(S): A REDCap survey was distributed through the OI Foundation on August 31. Surveys completed through September 11 by individuals with OI or their caregiver are included in this analysis. Participants were asked to compare their symptoms and access to healthcare during the first 4 months of the pandemic to the 4 months before the pandemic. RESULT(S): 85 surveys were completed, and 6 were partially completed. The median age of participants was 40 years;35% were children. 32% of participants self-identified as having severe OI. Although most reported no changes in bone pain or fractures, 46% reported they were less likely to seek emergency medical care to treat a fracture, while 33% reported they were more likely to treat fractures at home (Fig 1A). There were delays in accessing all services, with greatest delays accessing dentistry (74%) and aquatic therapy (84%) (Fig 1B). 36% of participants receiving bisphosphonate infusions had delayed infusions because of the pandemic (Fig 1C). Of note, 50% of planned surgeries were delayed. CONCLUSION(S): Although many individuals with OI and their caregivers reported delays in accessing bone-related services/clinics during this 4-month period, there was not a concomitant increase in reported symptoms. This may have related to shelter-in-place restrictions and decreased activity. Limitations of this study include small sample size and potential selection bias because responses were obtained only from OIF members. To address these limitations, we are distributing the survey through healthcare providers of individuals with OI across major regions of the US from a variety of practice types including endocrine, orthopedics and multidisciplinary clinics. Furthermore, as the COVID-19 pandemic continues, we hope that this survey will provide information to address what aspects of healthcare may be in greatest need, as well as the modality through which services may be met. (Figure Presented).

Experiences of delivering virtual therapy groups for children with osteogenesis imperfecta during the Covid-19 pandemic

OBJECTIVE: To explore the experiences of a virtual group therapy programme for children with Osteogenesis Imperfecta (OI) who were unable to access face to face therapy due to a global pandemic. In a regional OI service up to 3 face to face 6-week therapy groups are offered for children during summer school holidays. Throughout the Covid-19 pandemic, OI children were at risk of deconditioning due to government restrictions in school attendance, exercise and socialisation. An alternative means of delivering therapy was required. METHOD(S): 30 families with school age children were invited to attend a virtual therapy group. Following initial interest from 21 children, 14 (age range 4-14 years) participated in a 5 week therapy group. Children were split into 3 age groups (4-7/8-12/13-14). Weekly 75 minute sessions comprised functional gross and fine motor activities. Educational elements with opportunities to explore thoughts and feelings were included. Each group were set a challenge to compete a virtual race from Bristol to Lands' End, recording their distance (walking, wheeling, cycling) throughout the week. Feedback was collected from participants and parents. RESULT(S): Feedback was received from 12/14 of attendees and parents and 4/7 who did not attend. Reasons for non-attendance included anxiety around video calls, other commitments and injuries. Of those that attended 100% (n=12) enjoyed the group and reported increased activity levels. Scavenger Hunt was cited as the favourite activity. 16.6% (n=2) children reported discussion on personal feelings uncomfortable. 16.6% (n=2) reported exercises were hard. 100% (n=9) of parents reported no significant difficulties with IT. Parent reported benefits included positive social interaction with other children with OI (66%, n=6), improving routine in preparation for school return (55%, n=5). Challenges for therapy team included identifying appropriate IT platform, choosing activities appropriate for various abilities and virtual instruction. Successes included time efficiency, full inclusion regardless of geographic location, increased activity levels of children with OI in preparation for school return. CONCLUSION(S): A safe, socially distanced method of delivering group therapy during a pandemic was achieved. Virtual therapy can be a useful adjunct, however this should not replace face to face therapy where possible.

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

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.

Jahreskongress DVO OSTEOLOGIE 2022.

The proceedings contain 79 papers. The topics discussed include: vertebral fractures increase the risk of subsequent vertebral fractures: results from a large German health insurance dataset;analysis of bone architecture using fractal-based TX-Analyzer in adult patients with osteogenesis imperfecta;bone health in nursing home residents in Germany - do we care enough?;types of therapeutic errors in the management of osteoporosis: results of an experimental study;cysteine-rich angiogenic inducer 61 as a tool to efficiently enrich myeloid angiogenic cells from peripheral blood;response of bone tissue to ostarine treatment and/or treadmill exercise in a healthy adult rat model;influence of the cell aggregation technique on the differentiation of human articular chondrocytes in microtissues;changes in dispensing of anti-osteoporotic drugs during COVID-19 pandemic;and loss of adipogenic dickkopf-1 increases trabecular and cortical bone mass by promoting bone formation in male mice.

Determinant Factors of the Quality of Life in Children with Osteogenesis Imperfecta during the COVID-19 Pandemic

BACKGROUND: Osteogenesis imperfecta (OI) is a common chronic illness with increasing prevalence. Coronavirus disease 2019 (COVID-19) and large society restriction policies in Indonesia cause problems and might affect the quality of life (QoL) of children with OI. AIM: The objective of the study was to evaluate determinant factors (such as number of hospital visits per year, calcium and/or Vitamin D consumption, fear and obstacles of visiting the hospital, and parent’s layoff) of OI children’s QoL pre and during the 1st year of the COVID-19 pandemic. METHODS: This was a cross-sectional study design conducted in the Pediatric Endocrinology Outpatient Clinic, Dr. Soetomo Hospital, Surabaya, Indonesia, during the 1st year of COVID-19 pandemic to assess the patient’s QoL. This study used a diagnostic group with questionnaires. The instrument included the Pediatric Quality of Life Inventory 4.0 Generic Score, a standardized interview questionnaire comprising questions on the participant characteristics and determinant factors pre and during the COVID-19 pandemic. Analysis of determinant factors pre and during the pandemic used McNemar. Correlation between determinant factors and QoL used linear regression for physical and emotional dimensions and logistic regression for social, school, and total score. RESULTS: Of the 22 children with OI, 19 had fear of visiting the hospital (p < 0.001), and 16 had obstacles to visiting the hospital (p < 0.01). Taking calcium and/or Vitamin D supplementation pre and during the COVID-19 pandemic affected school functioning (p = 0.015) and the total score (p = 0.027). CONCLUSION: The significant risk factors pre and during COVID-19 were fear of and obstacles to visiting the hospital. Supplementation of calcium and/or Vitamin D pre and during the COVID-19 pandemic significantly impacted school functioning and the total score.

Outcome of COVID19 in Patients With Osteogenesis Imperfecta: A Retrospective Multicenter Study in Saudi Arabia.

Background: Although genetic diseases are rare, children with such conditions who get infected with COVID-19 tend to have a severe illness requiring hospitalization. Osteogenesis imperfecta (OI) is a rare genetic disorder of collagen resulting in fractures and skeletal deformities. Kyphoscoliosis, restrictive lung disease, and pneumonia worsen the prognosis of patients with OI. The use of bisphosphonate improves bone mineral density (BMD) and reduces fractures in OI. There is no literature describing the impact of COVID-19 in patients with OI. Methodology: A retrospective multi-center study was performed in three hospitals in Jeddah and Riyadh, Saudi Arabia, from March 1st, 2020, until August 31st, 2021, aiming to evaluate the outcome of COVID-19 in patients with OI. Demographics, vaccination status, underlying kyphoscoliosis, functional status, use of bisphosphonate, BMD, and COVID-19 severity, and course were recorded for all patients. Results: Twelve cases of confirmed COVID-19 were identified among 146 patients with OI. 9 (75%) of patients were less than 18 years, 6 (50%) were male, 5 (41%) had kyphoscoliosis, and 5 (41%) were wheelchair-bound. 6 (50%) received bisphosphonate, and 7(58%) had normal BMD. All patients had mild disease and did not require hospitalization. None of OI the patients with COVID-19 were fully vaccinated before the infection, and some were ineligible for vaccination. Conclusion: Patients with OI and COVID-19 in our study recovered without complications, unlike patients with other genetic diseases. Young age and mild illness contributed to the favorable outcome. Half of the patients received bisphosphonate and had normal BMD.