ArticleOrphanet journal of rare diseases2025
Health-related quality of life in individuals with osteogenesis imperfecta in the United States: a cross-sectional study.
Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Health-Related Quality of Life and Fatigue in Patients with Osteogenesis Imperfecta.Healthcare (Basel, Switzerland) · 2026Article
- Osteogenesis imperfecta: a registry-based study of the clinical symptoms of disease in a large cohort of Italian patients.Frontiers in endocrinology · 2026Article
- Use of Analgesics in Osteogenesis Imperfecta in Denmark-A Nationwide Register-based Cohort Study.Calcified tissue international · 2025Article
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4 authors.
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Abstract
backgroundOsteogenesis imperfecta (OI) is a group of connective tissue disorders characterized by bone fragility and frequent fractures. The purpose of this study was to better understand the mental health burden, physical functioning, and health-related quality of life (HRQoL) in adults with OI in order to improve long-term care for this patient population.
methods26 individuals with OI were enrolled into this cross-sectional study at the Hospital for Special Surgery in New York, NY and completed all questionnaires, which included demographics, medical history, depression (PHQ-8), anxiety (GAD-7), pain catastrophizing (PCS), activities of daily living (HAQ-DI), grit (12-item Grit Scale), and HRQoL (SF-36 and PROMIS-29).
results11.5% of participants reported clinically significant symptoms of depression (PHQ-8 score ≥10) and 7.8% reported clinically significant symptoms of anxiety (GAD-7 ≥ 10). A prior psychiatric illness was reported by 57.7%. There was no difference in the level of pain catastrophizing in our cohort compared the general U.S. population (p = 0.363). Compared to the general population, individuals with OI had higher scores on the HAQ-DI (p < 0.001). Individuals with OI also reported significantly higher levels of resilience on the Grit Scale compared to the general population (p < 0.001). Individuals with OI had significantly lower scores on both HRQoL measures in terms of physical functioning domains (p < 0.001), but no significant difference compared to the general population across mental health domains.
conclusionsThese findings suggest that individuals with OI may not necessarily experience a greater mental health burden compared to the general population despite lower scores in areas of physical functioning. We speculate this discrepancy between mental and physical health scores may be partially explained by their increased resilience. Altogether, a comprehensive approach to care that recognizes all aspects of living with OI, including pain, social functioning, and daily activities, is needed when caring for individuals with OI.
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