Facilitators and barriers to care among individuals with osteogenesis imperfecta

Bibliographic Data

ID21580045
AuthorsSelena Guo (Baylor College of Medicine), Francesca C Gedeon (Baylor College of Medicine), Francesca Gedeon (Baylor College of Medicine), Andrew D Wiese (0000-0002-5181-0674, Baylor College of Medicine, corresponding author), Justin H Qian (Baylor College of Medicine), Julia Morales (0000-0002-9282-2196, Baylor College of Medicine), Julia M Morales (Baylor College of Medicine), Whitney S Shepherd (Baylor College of Medicine), Gianna M Colombo (Baylor College of Medicine), Kara Ayers (0000-0002-2590-7501, Department of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center), Kara B Ayers (Department of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center), Hannah Cho (Baylor College of Medicine), W Conor Rork (Vagelos College of Physicians and Surgeons, Columbia University), Kristin M Kostick (0000-0003-2510-0174, Baylor College of Medicine), Kristin M Kostick-Quenet (Baylor College of Medicine), Dianne Nguyen (Baylor College of Medicine), Sophie C Schneider (0000-0002-1469-7764, Baylor College of Medicine), Members of the BBDC (University of Ottawa), Marie‐Eve Robinson (0000-0002-2539-227X, University of Ottawa), Marie-Eve Robinson (University of Ottawa), Chaya N Murali (0000-0002-9781-3387, Baylor College of Medicine), Brendan Lee (0000-0001-8573-4211, Baylor College of Medicine), V Reid Sutton (0000-0001-9468-317X, Baylor College of Medicine), Eric A Storch (0000-0002-7631-3703, Baylor College of Medicine)
Year2025
Pages1-16
Publication date2025-10-10
Open AccessNo
TypeARTICLE
VenuePsychology & Health (JOURNAL)
Journal identifiersISSN: 0887-0446 • E-ISSN: 1476-8321
PublisherInforma UK Limited (PUBLISHER • GB)
DOI10.1080/08870446.2025.2571593
PMID41071002
OpenAlexW4415038540
LanguageEN
References cited52

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

Health care · Osteogenesis imperfecta · Population · Bone fractures and treatments · Child Abuse and Related Trauma · Connective tissue disorders research

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