Pain Experiences of Children and Adolescents With Osteogenesis Imperfecta: An Integrative Review

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Pain is a commonly experienced symptom for children and adolescents diagnosed with osteogenesis imperfecta (OI). The purpose of this integrative review was to describe the pain experience of children and adolescents with OI as well as critically appraise the content and methods of studies assessing OI pain.


Five electronic bibliographic databases were searched. Published quantitative, qualitative, and/or mixed-method studies assessing pain in children and adolescents with OI were included and appraised. Constant comparison of the extracted data was used to synthesize themes.


A total of 783 titles were identified, and 19 studies that met the inclusion criteria were included in this review. Study appraisal scores ranged from 25.0% to 83.3% using the Quality Assessment Tool. The majority of studies included assessed pain as a secondary outcome (63%) and less than half used moderately established or well-established tools (42%). Two themes were uncovered: “Pain is Present and Problematic” and “Issues with Pain Assessment.” Key findings under each theme include: (1) the negative impacts of pain and the substandard use of pain management strategies; and (2) the lack of multidimensional and consistent pain assessments, as well as difficulties in assessing pain in younger children.


Research on OI has focused very little on pain experience in children and adolescents, and there is no standard method of assessing pain. To better describe the pain experience of these patients, future research should focus on better characterizing OI pain with the use of age-appropriate valid, reliable, and multidimensional pain assessment tools.

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