Context/Objective

To describe patient experiences with fracture prevention and management among persons with spinal cord injuries/disorders (SCI/D).

Design

Qualitative data collected via semi-structured telephone interviews.

Setting

Veterans Health Administration (VA) SCI/D System of Care.

Participants

Veterans with SCI/D (n = 32) who had experienced at least one lower-extremity fracture in the prior 18 months.

Interventions

N/A.

Outcome Measures

Interview questions addressed patients’: pre-fracture knowledge of osteoporosis and bone health, diagnosis and management of osteoporosis, history and experiences with fracture treatment, and post-fracture care and experiences.

Results

Participants expressed concerns about bone health and fractures in particular, which for some, limited activities and participation. Participants recalled receiving little information from providers about bone health or osteoporosis and described little knowledge about osteoporosis prevention prior to their fracture. Few participants reported medication management for osteoporosis, however many reported receiving radiographs/scans to confirm a fracture and most reported being managed non-operatively. Some reported preference for surgical treatment and believed their outcomes would have been better had their fracture been managed differently. Many reported not feeling fully included in treatment decision-making. Some described decreased function, independence and/or participation post-fracture.

Conclusion(s)

Our results indicate that persons with SCI/D report lacking substantive knowledge about bone health and/or fracture prevention, and following fracture, feel unable and/or hesitant to resume pre-fracture participation. In addition, our findings indicate that individuals with SCI/D may not feel as engaged as they would like to be in establishing fracture treatment plans. As such, persons with SCI/D may benefit from ongoing discussions with providers about risks and benefits of fracture treatment options and consideration of subsequent function and participation, to ensure patients preferences are considered.

中文翻译：

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脊髓损伤和疾病患者下肢骨折的预防和管理：患者观点

背景/目标

描述脊髓损伤/疾病 (SCI/D) 患者在骨折预防和管理方面的经验。

设计

通过半结构化电话采访收集的定性数据。

环境

退伍军人健康管理局 (VA) SCI/D 护理系统。

参加者

在过去 18 个月内经历过至少一次下肢骨折的SCI/D 退伍军人 ( n  = 32)。

干预措施

不适用。

结果措施

访谈问题针对患者：骨折前骨质疏松症和骨骼健康的知识、骨质疏松症的诊断和管理、骨折治疗的病史和经验，以及骨折后护理和经验。

结果

参与者表达了对骨骼健康和骨折的担忧，特别是对于某些人来说，活动和参与受到限制。参与者回忆说，他们从提供者那里收到的关于骨骼健康或骨质疏松症的信息很少，并且在骨折前描述了关于预防骨质疏松症的知识。很少有参与者报告了骨质疏松症的药物治疗，但是许多参与者报告说他们接受了 X 光片/扫描以确认骨折，并且大多数人报告说是非手术治疗。一些人报告说他们更喜欢手术治疗，并相信如果他们的骨折得到不同的处理，他们的结果会更好。许多人报告说感觉没有完全参与治疗决策。一些人描述了骨折后功能、独立性和/或参与度下降。

结论

我们的结果表明，患有 SCI/D 的人报告缺乏关于骨骼健康和/或骨折预防的实质性知识，并且在骨折后，感觉无法和/或犹豫是否要恢复骨折前的参与。此外，我们的研究结果表明，患有 SCI/D 的人可能不会像他们希望的那样参与制定骨折治疗计划。因此，SCI/D 患者可能会受益于与提供者就骨折治疗方案的风险和益处以及对后续功能和参与的考虑进行的持续讨论，以确保考虑患者的偏好。