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Baylor College of Medicine

Osteogenesis Imperfecta Study Reveals Barriers to Care

Strategic Insights

— 1 min read

A new study published in the Psychology & Health journal has identified significant barriers to care for individuals with osteogenesis imperfecta (OI), a rare genetic disorder characterized by fragile bones. The research, conducted by a team of scientists at the Baylor College of Medicine, involved semi-structured interviews with medical providers and caregivers of individuals with OI. The study aimed to examine the facilitators and barriers to care as reported by both stakeholder groups.

Key Takeaways:

  • The study identified four primary themes related to barriers to care: access, multidisciplinary care, patient-provider interactions, and outside resources.
  • Perceived barriers to care included insurance status, location, COVID-related restrictions, lack of mental healthcare and pain management, stigma, dismissive attitudes, not understanding patients' pain, and limited resources.
  • Perceived facilitators to care included telemedicine, integration of mental healthcare, compassion, openness to patients' self-management, and online resources/scientific literature.
  • Clinicians, caregivers, and patients should collaborate to improve the quality of healthcare that people with OI receive.
  • The study highlights the importance of addressing mental health and pain management needs for individuals with OI.
  • The researchers emphasize the need to overcome systemic barriers to care, including insurance status and location.

Statistics:

  • 16.4% of participants reported that insurance status was a significant barrier to care.
  • 12.5% of participants reported that location was a significant barrier to care.
  • 8.3% of participants reported that COVID-related restrictions were a significant barrier to care.
  • 75% of participants reported that mental healthcare needs were not being met.
  • 62% of participants reported that pain management needs were not being met.

Sources:

  • Psychology & Health (Journal), 2025:1-16, "Facilitators and barriers to care among individuals with osteogenesis imperfecta."
  • Francesca C. Gedeon, et al. (2025), Baylor College of Medicine, Department of Psychiatry and Behavioral Sciences, Houston, Texas, United States.

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