A qualitative exploration of child, caregiver, and clinician perspectives on mental health in children with osteogenesis imperfecta.
Justin H Qian, Andrew D Wiese, Clarissa Gonzalez and 14 others
PMID 40938730WHAT IT FOUND
Children with osteogenesis imperfecta, their caregivers and clinicians described frequent worry about fractures, low mood from functional limits, isolation and stigma.
Support and mental health referrals were seen as helpful, but access was often poor.
Key findings
01All interviewed caregivers and clinicians reported anxiety or depressed mood among children with OI, and 8/10 children did.
02Functional limitations, fear of fractures, social isolation and stigma were reported as contributors to anxious or depressed mood.
03Social support, mental health referrals and access were seen as protective, especially by clinicians, while limited healthcare access was a common barrier.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
This is a qualitative interview study, so the themes are participants' reported experiences, not measured effects of an intervention. Depression and anxiety were described as mood symptoms, not clinically diagnosed disorders. The sample was small and mostly white, with limited representation of severe OI types and no assessment of perceived OI severity. Clinician occupations were not reported, so it is unclear which professions the clinician themes represent.
Declared interests
The study was funded by NIH institutes and the Brittle Bone Disease Consortium. Most authors declared no competing interests, but some disclosed relationships with pharmaceutical companies and the Osteogenesis Imperfecta Foundation.
The easy way to misread this
Do not read these themes as evidence that an intervention improves mental health in children with OI. The study asked people to describe their experiences, and it did not diagnose depression or anxiety or test treatment.