Patient Education Committee Update

Joseph P. Davey, MD
Patient Education Committee Chair

Our committee has been very busy this year! Not long after our Annual Meeting, a social media protest, #NotDeformed, was led to protest the SRS frequent use of the term “deformity” on our website and in our patient education materials. SRS leadership agreed that we should try to remove the term from our content as much as possible. Most members of the committee were involved in this effort to identify all instances of the term and prepare a less stigmatizing alternative. These many changes are in process of being incorporated by the SRS staff.

A major goal of the committee is to summarize recent scoliosis literature into easily understood “Reader’s Digest” versions. We first worked on the Hibbs Award winning papers from the 2020 Annual Meeting. Dr. Bas summarized the best clinical paper, “Complications Following Surgical Treatment of Adolescent Idiopathic Scoliosis: 10-year Prospective Follow-up Study” and Dr. Davey summarized the best basic science paper entitled “A Novel Imaging Study to Quantify Respiratory Function in Early Onset Scoliosis – Introducing Quantitative Dynamic Magnetic Resonance Imaging (QdMRI).” This year we are trying to produce summaries of two articles from the spinal literature in an accessible way. A team of four committee members are producing these summaries, Drs. Bonfield, Lark, Policy, and Spina lead this effort. Some of these summaries are now viewable on our website.

We all hear questions on a nearly daily basis about Vertebral Body Tethering and ApiFix device, the two non-fusion scoliosis treatments now available in the United States. Their main source of information on these topics include their peers, Facebook parent groups and online searches. Unfortunately, much of this information can be misleading. Our committee decided to address some of these misconceptions by hosting a Webinar on “New and Emerging Technologies.” Dr. Ferlic is organizing this event to coordinate with June’s Scoliosis Awareness Month. Other speakers include Dr. Peter Newton on VBT and Dr. Yizhar Floman on ApiFix.

A “New and Emerging Technologies” section was created last year on our website. This year, we have added summaries on “Vertebral Body Tethering” (Dr. Lee), “The ApiFix Device” (Dr. Fuller), and “Minimally Invasive Spine Surgery” (Dr. Riise.)

One charge of our committee is to seek out ways to collaborate with other scoliosis organizations such as CurvyGirls, the National Scoliosis Foundation, and the Setting Scoliosis Straight Foundation. Mr. Joseph O’Brien, from the National Scoliosis Foundation is an advisory member of our committee and has been very helpful in strengthening these relationships. One of our members, Ms. Marissa Muccio PT, serves on the advisory board for CurvyGirls. They have voiced appreciation for the work the committee has put in to remove the word “deformity” from our site.

Ongoing efforts include responding to urgent information requests such a reporter working on a series of scoliosis articles for the online health and wellness site, thehealthy.com. We also coordinate our efforts with other SRS committees such as the Non-Op Committee, the Growing Spine Committee, and the Website Committee.

Thanks to all the members of the Patient Education Committee this year.

 

Chair: Joseph P. Davey Committee: William A. Phillips, Past Chair; Jonathan E. Fuller; Lisa Stringer (A); Nelson Astur Neto (C); Christopher Bonfield (C); Peter W. Ferlic (C); Rajat Mahajan (C); James F. Policy (C); Nicholas T. Spina, III (C); Robert K. Lark, Chair Elect; Marissa M. Muccio (A); Carlos A. Tello; Teresa Bas; Evalina L. Burger; Rolf B. Riise; Joseph P. O'Brien, Advisory