TY - JOUR
T1 - Psychosocial Outcomes of Pain and Pain Management in Adults with Osteogenesis Imperfecta
T2 - A Qualitative Study
AU - Members of the BBDC
AU - Shepherd, Whitney S.
AU - Wiese, Andrew D.
AU - Cho, Hannah E.
AU - Rork, W. Conor
AU - Baig, M. Usman
AU - Kostick, Kristin M.
AU - Nguyen, Dianne
AU - Carter, Erin M.
AU - Sutton, V. Reid
AU - Nagamani, Sandesh C.S.
AU - Rauch, Frank
AU - Glorieux, Francis
AU - Retrouvey, Jean Marc
AU - Lee, Janice
AU - Esposito, Paul
AU - Wallace, Maegen
AU - Bober, Michael
AU - Eyre, David
AU - Gomez, Danielle
AU - Harris, Gerald
AU - Hart, Tracy
AU - Jain, Mahim
AU - Krakow, Deborah
AU - Krischer, Jeffrey
AU - Orwoll, Eric
AU - Nicol, Lindsey
AU - Raggio, Cathleen
AU - Smith, Peter
AU - Tosi, Laura
AU - Murali, Chaya N.
AU - Robinson, Marie Eve
AU - Schneider, Sophie C.
AU - Lee, Brendan
AU - Sutton, V. Reid
AU - Storch, Eric A.
N1 - Publisher Copyright:
© 2024, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.
PY - 2024
Y1 - 2024
N2 - 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.
AB - 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.
KW - Acute pain
KW - Chronic pain
KW - Osteogenesis imperfecta
KW - Pain
KW - Pain management
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U2 - 10.1007/s10880-023-09991-z
DO - 10.1007/s10880-023-09991-z
M3 - Article
AN - SCOPUS:85183433022
SN - 1068-9583
JO - Journal of Clinical Psychology in Medical Settings
JF - Journal of Clinical Psychology in Medical Settings
ER -