Clinical and demographic characteristics of online community members--does it represent reality?

Background: 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.

Purpose: To analyze the clinical and demographic characteristics of patients who use disease-specific online communities.

Study design: A retrospective clinical study.

Patient sample: One hundred ninety-five patients with scoliosis who are also members of a popular scoliosis-specific online community.

Main outcome measures: Five domains of the Scoliosis Research Society-22 (SRS-22) quality-of-life questionnaire: function, pain, mental health, self-image, and satisfaction.

Methods: 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.

Results: 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.

Conclusion: 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.