BackgroundWhile only one drug is known to slow the progress of amyotrophic lateral sclerosis (ALS), numerous drugs can be used to treat its symptoms. However, very few randomized controlled trials have assessed the efficacy, safety, and side effects of these drugs. Due to this lack of randomized controlled trials, consensus among clinicians on how to treat the wide range of ALS symptoms and the efficacy of these treatments is low. Given the lack of clinical trials data, the wide range of reported symptoms, and the low consensus among clinicians on how to treat those symptoms, data on the prevalence and efficacy of treatments from a patient’s perspective could help advance the understanding of the symptomatic treatment of ALS.ObjectiveTo compare clinicians’ and patients’ perspectives on the symptomatic treatment of ALS by comparing data from a traditional survey study of clinicians with data from a patient social network.MethodsWe used a survey of clinicians’ perceptions by Forshew and Bromberg as our primary data source and adjusted the data from PatientsLikeMe to allow for comparisons. We first extracted the 14 symptoms and associated top four treatments listed by Forshew and Bromberg. We then searched the PatientsLikeMe database for the same symptom–treatment pairs. The PatientsLikeMe data are structured and thus no preprocessing of the data was required.ResultsAfter we eliminated pairs with a small sample, 15 symptom–treatment pairs remained. All treatments identified as useful were prescription drugs. We found similarities and discrepancies between clinicians’ and patients’ perceptions of treatment prevalence and efficacy. In 7 of the 15 pairs, the differences between the two groups were above 10%. In 3 pairs the differences were above 20%. Lorazepam to treat anxiety and quinine to treat muscle cramps were among the symptom–treatment pairs with high concordance between clinicians’ and patients’ perceptions. Conversely, amitriptyline to treat labile emotional effect and oxybutynin to treat urinary urgency displayed low agreement between clinicians and patients.ConclusionsAssessing and comparing the efficacy of the symptomatic treatment of a complex and rare disease such as ALS is not easy and needs to take both clinicians’ and patients’ perspectives into consideration. Drawing a reliable profile of treatment efficacy requires taking into consideration many interacting aspects (eg, disease stage and severity of symptoms) that were not covered in the present study. Nevertheless, pilot studies such as this one can pave the way for more robust studies by helping researchers anticipate and compensate for limitations in their data sources and study design.

Recent advances in minimally invasive spine surgery techniques have precipitated the popularity of lateral position spine surgery, such as lateral lumbar interbody fusion (LLIF) and oblique lumbar interbody fusion (OLIF). Lateral position surgery offers a unique, minimally invasive approach to the lumbar spine that allows for preservation of anterior and posterior spinal elements. Traditionally, surgeons have relied upon fluoroscopy for triangulation and implant placement. Over the last decade, intraoperative 3-dimensional navigation (ION) has risen to the forefront of innovation in LLIF and OLIF. This technology utilizes intraoperative advanced imaging, such as comminuted tomography (CT), to map the patient's 3D anatomy and allows the surgeon to accurately visualize instruments and implants in spatial relationship to the patient's anatomy in real time. ION has the potential to improve accuracy during instrumentation, decrease operating room times, lower radiation exposure to the surgeon and staff, and increase feasibility of single-position surgery during which the spine is instrumented both laterally and posteriorly while the patient remains in the lateral decubitus position. Despite the advantages of ION, the intra-operative radiation exposure risk to patients is controversial. Future directions include continued innovation in ultra low radiation imaging (ULRI) techniques and image enhancement technology and in uses of robot-assisted navigation in singleposition spine surgery.