Facilitators and barriers to care among individuals with osteogenesis imperfecta.

OBJECTIVES

Limited research has examined facilitators and barriers that affect patient care in osteogenesis imperfecta (OI). The present study seeks to identify (1) facilitators and (2) barriers to care as reported by medical providers and caregivers of individuals with OI, and (3) common themes between both stakeholder groups.

METHODS

Semi-structured interviews were conducted to assess treatment access, treatment quality, knowledge of OI, and patient mental health. Transcripts were coded, and salient themes were abstracted using thematic analysis to find themes related to barriers and facilitators to care. Theme frequencies were calculated to identify the greatest barriers and facilitators to care, according to clinicians and caregivers.

RESULTS

Four primary themes emerged: (1) access; (2) multidisciplinary care; (3) patient- provider interactions; and (4) outside resources. Perceived barriers 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 included telemedicine, integration of mental healthcare, compassion, openness to patients' self-management, and online resources/scientific literature.

CONCLUSION

There are many factors that affect OI management. Clinicians, caregivers, and patients should collaborate to improve the quality of health care that people with OI receive.