Information exchange on adolescent scoliosis discussion forums among patients and caregivers: a thematic analysis

Online health-related support groups have increasingly become a regular resource for patients and caregivers; however, the content of these forums is largely unknown to medical teams. The purposes of this study were to (1) review posts from scoliosis discussion forums to establish common themes related to the care experience of patients with scoliosis and (2) understand how common themes vary among pediatric and adult patients, as well as caregivers.

Posts were collected from two public scoliosis forums. Analysis was performed using grounded theory-a methodology that relies on the repeated analyses of qualitative data to identify recurring concepts, which are then coded and grouped into categories and ultimately central themes that seek to synthesize the relationships between categories. Information posts were reviewed by a board-certified orthopedic surgeon who performs scoliosis surgery for factual basis or misinformation.

Analysis of 911 posts revealed five central themes. The two most common themes among patients ≥ 18 and caregivers involve seeking out emotional support and information about surgical treatment. Patients < 18 frequently sought out emotional support but were also largely interested in information about bracing. The most prevalent theme among all contributors involved seeking out emotional support. There was very little medical misinformation found within posts.

Scoliosis forums serve as an informal outlet where patients and families can offer emotional support and share experiences. Physicians should provide direct emotional support to patients and offer these forums as a resource, without significant concerns about propagating medical misinformation.