The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence

Renee F Modica,1 Kathleen Graham Lomax,2 Pamela Batzel,3 Leah Shapardanis,3 Kimberly Compton Katzer,3 Melissa E Elder1 1Division of Pediatric Rheumatology, Immunology and Infectious Diseases, University of Florida, Gainesville, FL, USA; 2Immunology and Dermatology Medical Affairs, Novartis Pharmaceuticals Corporation, East Hanover, USA; 3Treato, Princeton, NJ, USA Background: Children with systemic juvenile idiopathic arthritis (SJIA) often encounter a delay between symptom onset and disease diagnosis, partly due to the broad differential of fever and lack of symptom recognition by providers. Families often seek multiple medical opinions and post on social media about their frustrations. This linguistic analysis observed the changing language patterns and social media posting behaviors of parents in the time leading to, during, and after SJIA diagnosis. Methods: Public social media sites were manually reviewed by a linguistic team to evaluate posts about SJIA from US-based parents. Results: A total of 3,979 posts between July 2001 and January 2015 were reviewed from 108 sites. Pre-SJIA diagnosis parents sought answers and shared status updates on social media, focusing primarily on the following three site types: alternative/natural lifestyle forums (39%), Facebook (27%), and disease-specific forums (17%). Posts during early prediagnosis phases were characterized by expressive language showing confidence in health care providers and trust in parental instincts. At later prediagnosis stages, parents continued to use social media, but the posts demonstrated increased frustration with delays in diagnosis and gaps in communication with providers. More objective symptom descriptions and a greatly reduced child-centered emotional focus were observed as parents shifted into caregiving roles. Once the diagnosis of SJIA was confirmed, parents used straightforward, less expressive language, and Facebook (47%) to make "announcement" posts and increased their use of SJIA websites (30%). With treatment initiation, the posts demonstrated a slow return of expressive language and an increased parental understanding of the "new normal". Conclusion: Parents use different language styles, frames of reference, and websites before and after SJIA diagnosis. Gaps in parent–provider communication, especially before diagnosis, and their new roles as caregivers lead to parental use of social media to express frustration with the health care process. Providers should tailor their discussions with parents to address these issues. Keywords: systemic juvenile idiopathic arthritis, social media, linguistics, language frames, diagnostic proces

Polyetheretherketone (PEEK) cage filled with cancellous allograft in anterior cervical discectomy and fusion

From July 2004 to June 2005, 19 patients with 25 discs underwent anterior cervical discectomy and interbody fusion (ACDF) in which polyetheretherketone (PEEK) cages were filled with freeze-dried cancellous allograft bone. This kind of bone graft was made from femoral condyle that was harvested during total knee arthroplasty. Patient age at surgery was 52.9 (28–68) years. All patients were followed up at least 1 year. We measured the height of the disc and segmental sagittal angulation by pre-operative and post-operative radiographs. CT scan of the cervical spine at 1 year was used to evaluate fusion rates. Odom's criteria were used to assess the clinical outcome. All interbody disc spaces achieved successful union at 1-year follow-up. The use of a PEEK cage was found to increase the height of the disc immediately after surgery (5.0 mm pre-operatively, 7.3 mm immediately post-operatively). The final disc height was 6.2 mm, and the collapse of the disc height was 1.1 mm. The segmental lordosis also increased after surgery (2.0° pre-operatively, 6.6° immediately post-operatively), but the mean loss of lordosis correction was 3.3° at final follow-up. Seventy-four percent of patients (14/19) exhibited excellent/good clinical outcomes. Analysis of the results indicated the cancellous allograft bone-filled PEEK cage used in ACDF is a good choice for patients with cervical disc disease, and avoids the complications of harvesting iliac autograft