Orthopaedic Hospital Berlin at Vivantes Klinikum im Friedrichshain, Landsberger Allee 49, 10249 Berlin, Germany.
Spine J. 2011 Sep;11(9):826-31. doi: 10.1016/j.spinee.2011.06.011. Epub 2011 Jul 29.
The decision to undergo surgery for scoliosis is shared between the physician, patient, and family. In an effort to obtain objective data regarding scoliosis surgery, patients often use the Internet, which includes sharing experiences in online communities. To this end, physicians have limited knowledge about disease-specific online communities.
To analyze the clinical and demographic characteristics of patients who use disease-specific online communities.
A retrospective clinical study.
One hundred ninety-five patients with scoliosis who are also members of a popular scoliosis-specific online community.
Five domains of the Scoliosis Research Society-22 (SRS-22) quality-of-life questionnaire: function, pain, mental health, self-image, and satisfaction.
An online questionnaire was submitted by members of a scoliosis-specific online community. One hundred ninety-five patients with scoliosis fulfilled the inclusion criteria, which represented 54% of all active members who have logged into this community during the time of data collection. A descriptive analysis was performed for demographic and clinical characteristics.
Analysis revealed a bimodal age distribution. Most online members were female (74%) and underwent surgical treatment (78%). Of all surgical patients, 52% had surgery between the age of 10 and 18 years. The average time since surgery (follow-up) was 10 years and 9 months. A revision rate of 17% was calculated, which increased with longer follow-up. Five of nine surgical subgroups significantly outperformed nonsurgical patients in regards of SRS-22 total scores.
This study supports that members from an online scoliosis community may be the representative sample of the general scoliosis patient population. The information obtained may be useful for physicians to understand patient concerns and mitigate treatment expectations when counseling patients.
脊柱侧弯手术的决策是由医生、患者和家属共同做出的。为了获得脊柱侧弯手术的客观数据，患者通常会使用互联网，包括在在线社区中分享经验。为此，医生对特定于疾病的在线社区知之甚少。
分析使用特定于疾病的在线社区的患者的临床和人口统计学特征。
回顾性临床研究。
195 名也是一个受欢迎的脊柱侧弯特定在线社区成员的脊柱侧弯患者。
脊柱侧凸研究协会 22 项（SRS-22）生活质量问卷的五个领域：功能、疼痛、心理健康、自我形象和满意度。
在线社区的成员提交了在线问卷。195 名符合纳入标准的脊柱侧弯患者代表了在数据收集期间登录该社区的所有活跃成员的 54%。对人口统计学和临床特征进行描述性分析。
分析显示出双峰年龄分布。大多数在线成员为女性（74%），并接受了手术治疗（78%）。所有手术患者中，52%的手术年龄在 10 至 18 岁之间。手术（随访）后的平均时间为 10 年 9 个月。计算出的修订率为 17%，随着随访时间的延长而增加。在 SRS-22 总分方面，有 5 个手术亚组中的 9 个明显优于非手术患者。
本研究支持在线脊柱侧弯社区的成员可能是一般脊柱侧弯患者人群的代表性样本。获得的信息可能有助于医生在为患者提供咨询时了解患者的关注点并减轻治疗期望。
