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

Datos Bibliográficos

ID22073209
AutoresDebra Smyth (0000-0002-4178-1435, University of Glasgow), Monica Hytiris (0000-0002-9018-3386, University of Glasgow), Coreen Kelday (Brittle Bone Society), Ciara McDonnell (0000-0001-9414-5873, Children's Health Ireland at Crumlin), Christine Burren (0000-0002-3778-2945, Bristol Royal Hospital for Children), Adrian Gardner (0000-0002-7768-1161, Royal Orthopaedic Hospital), Lisa A Mills (0000-0001-5674-9166, University Hospitals Bristol NHS Foundation Trust), Lisa Mills (0000-0002-6168-7008), Susan Parekh (0000-0001-8866-0262, Eastman Dental Hospital), Oliver Semler (0000-0003-0029-7556, University of Cologne), Angela Stewart (0000-0002-6004-9266, Brittle Bone Society), Ingunn Westerheim, M K Javaid (0000-0001-7985-0048, Nuffield Orthopaedic Centre), Patricia Osborne, Patricia A Osborne (Brittle Bone Society), S Faisal Ahmed (0000-0003-0689-5549, University of Glasgow, autor de correspondencia)
Año2023
Volumen10
Páginas951569-951569
Fecha de publicación2023-01-04
Peer ReviewedSí
Open AccessSí
TipoARTICLE
RevistaFrontiers in Public Health (JOURNAL)
Identificadores de la revistaISSN: 2296-2565 • E-ISSN: 2296-2565
EditorialFrontiers Media SA (PUBLISHER • CH)
DOI10.3389/fpubh.2022.951569
PMID36684962
OpenAlexW4313584276
IdiomaEN
Citas recibidas1
Referencias citadas17

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

Anxiety · Computer-assisted web interviewing · Disease · Family medicine · Health care · Mental health · Osteogenesis imperfecta · Pandemic · Preference · Psychiatry · Bone fractures and treatments · Connective tissue disorders research · Medicine · Neurogenetic and Muscular Disorders Research

  • The Impact Survey

    Open Access•Taco van Welzenis, Ingunn Westerheim et al.•BMC Public Health•2024

  • Addressing the public mental health challenge of Covid-19

    Open Access•Jonathan Campion, Afzal Javed et al.•The Lancet Psychiatry•2020

  • Mental Health Effects of Covid-19 Pandemia

    Open Access•Konstantinos Kontoangelos, Marina Economou et al.•Psychiatry Investigation•2020

  • Colliding worlds

    Open Access•A Lafferty, Dominique Phillips et al.•Health & Social Care in the…•2021

Obras citantes distintas1
Citas por año0,5
Intervalo de citas2024 - 2024 (1)
Velocidad de citaciónrecent
Altamente citadoNo
Tipos de citaNeutras: 1
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