| Autor: |
Jill Flanagan, Laura Tosi, Erika Carter, Tracy Hart, Jeanne Franzone, Maegen Wallace |
| Jazyk: |
angličtina |
| Rok vydání: |
2023 |
| Předmět: |
|
| Zdroj: |
Children, Vol 10, Iss 8, p 1345 (2023) |
| Druh dokumentu: |
article |
| ISSN: |
2227-9067 |
| DOI: |
10.3390/children10081345 |
| Popis: |
Osteogenesis Imperfecta (OI) is a rare genetic disorder in Type I collagen characterized by bone fractures, fragility, and deformity. Current treatments are focused on decreasing fracture rates, improving bone strength, and improving overall global function. Recent research has focused primarily on fracture fixation and outcomes of intramedullary rodding of long bones. While surgical techniques continue to evolve, recent trends in OI research are focusing on patient quality of life and patient-reported outcomes. We created a 12-question survey seeking information regarding aspects of orthopedic care that OI patients and families feel are the most pressing to improve. The survey was electronically administered, and 341 individuals participated. A total of 75% of respondents who answered the age question (254/335) were adults. Regarding surgical intervention for long bones, only 16% of respondents recall being told they could not have surgery because they were too young. Of the 16%, 37.8% were told that |
| Databáze: |
Directory of Open Access Journals |
| Externí odkaz: |
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