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. 2024 Sep;31(3):614-627.
doi: 10.1007/s10880-023-09991-z. Epub 2024 Jan 28.

Psychosocial Outcomes of Pain and Pain Management in Adults with Osteogenesis Imperfecta: A Qualitative Study

Whitney S Shepherd  1 , Andrew D Wiese  1 , Hannah E Cho  1 , W Conor Rork  2 , M Usman Baig  1 , Kristin M Kostick  3 , Dianne Nguyen  4 , Erin M Carter  5 ; Members of the BBDC; Chaya N Murali  4   6 , Marie-Eve Robinson  7 , Sophie C Schneider  1 , Brendan Lee  4   6 , V Reid Sutton  4   6 , Eric A Storch  8
Collaborators, Affiliations

Psychosocial Outcomes of Pain and Pain Management in Adults with Osteogenesis Imperfecta: A Qualitative Study

Whitney S Shepherd et al. J Clin Psychol Med Settings. 2024 Sep.

Abstract

Osteogenesis imperfecta (OI) is a genetic disorder characterized by bone fragility and fractures, short stature, dental abnormalities, hearing loss, scoliosis, and chronic pain. Despite a growing literature on the functional outcomes of OI, limited research has explicitly examined the psychosocial outcomes of pain within OI. Adults with OI (N = 15) were interviewed to understand pain-related experiences through a thematic analysis of semi-structured interview data. Research team members, genetic research experts, and OI clinicians developed an interview guide focused on topics related to pain and mental health challenges. Participants' transcripts were coded by two independent coders; codes were then merged across coders and quotation outputs were subsequently abstracted (paraphrased then thematically classified) to identify common themes. Themes related to pain management variability regarding pain type, pain risk management and accessibility, pain outcomes (e.g., behavior, cognitive, affective), and pain exacerbating factors (e.g., individual, contextual) were identified. Participants reported chronic and acute pain, and despite the inaccessibility and stigmatization of pain medications (e.g., opioids), pharmacological treatments were the most common pain management approach. Participants reported negative pain outcomes, such as limited daily functioning and activity participation, fear, anger, anxiety, depression, and difficulty concentrating. Lastly, participants suggested that lack of physician and community knowledge on chronic pain in OI indirectly exacerbates both subjective pain intensity and outcomes. Although limited by a small, nondiverse sample, the current study provides valuable exploration of the unique pain experiences of adults with OI that may have implications for proactive management, treatment development, and clinician training.

Keywords: Acute pain; Chronic pain; Osteogenesis imperfecta; Pain; Pain management.

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