Access to care among patients with osteogenesis imperfecta during the COVID-19 pandemic.
Access to healthcare
Bisphosphonates
Osteogenesis imperfecta
Telemedicine
Journal
Archives of osteoporosis
ISSN: 1862-3514
Titre abrégé: Arch Osteoporos
Pays: England
ID NLM: 101318988
Informations de publication
Date de publication:
28 Nov 2023
28 Nov 2023
Historique:
received:
15
08
2023
accepted:
17
11
2023
medline:
29
11
2023
pubmed:
28
11
2023
entrez:
28
11
2023
Statut:
epublish
Résumé
In a cross-sectional study assessing the experiences of individuals with osteogenesis imperfecta accessing care during the COVID-19 pandemic, participants reported high rates of delays in accessing medical care and high utilization of telehealth. Considering the needs of individuals with complex medical conditions is important when improving access to care. Individuals with osteogenesis imperfecta (OI) often have complex care needs requiring that they see a variety of specialists. The onset of the COVID-19 pandemic in March 2020 led to delays in medical care for many health conditions. The goal of this study was to describe the experiences of individuals with OI accessing medical care during this time. Responses to an electronic survey distributed via the OI Foundation mailing list were collected from August 2020 until February 2021. Participants were instructed to compare their experiences in the months since the start of the pandemic with their experiences prior to this date. Data were analyzed using descriptive statistics and were compared across demographic groups using logistic regression and chi-squared tests. Surveys were completed by 110 participants. Most participants (72%) reported experiencing delays in accessing at least one care provider. The majority of participants reported less or similar amounts of bone pain (74.3%) and less or the same rate of fracture (88.6%) as before the start of the pandemic. While most study participants experienced delays in care, they did not report an increase in symptoms associated with OI. They also frequently utilized telehealth as a tool to see their providers. Future research should focus on the impact of changes in telehealth legislation on patients' ability to access care. As methods for care delivery evolve, the needs of people with OI and other rare diseases should be considered and prioritized.
Identifiants
pubmed: 38015270
doi: 10.1007/s11657-023-01355-2
pii: 10.1007/s11657-023-01355-2
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
143Subventions
Organisme : NCATS NIH HHS
ID : TL1 TR002382
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR002378
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1TR002378
Pays : United States
Organisme : NCATS NIH HHS
ID : TL1TR002382
Pays : United States
Informations de copyright
© 2023. International Osteoporosis Foundation and Bone Health and Osteoporosis Foundation.
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