Adolescent and Parent Perspectives on Digital Phenotyping in Youths With Chronic Pain: Cross-Sectional Mixed Methods Survey Study.

BACKGROUND: Digital phenotyping is a promising methodology for capturing moment-to-moment data that can inform individually adapted and timely interventions for youths with chronic pain. OBJECTIVE: This study aimed to investigate adolescent and parent endorsement, perceived utility, and concerns related to passive data stream collection through smartphones for digital phenotyping for clinical and research purposes in youths with chronic pain. METHODS: Through multiple-choice and open-response survey questions, we assessed the perspectives of patient-parent dyads (103 adolescents receiving treatment for chronic pain at a pediatric hospital with an average age of 15.6, SD 1.6 years, and 99 parents with an average age of 47.8, SD 6.3 years) on passive data collection from the following 9 smartphone-embedded passive data streams: accelerometer, apps, Bluetooth, SMS text message and call logs, keyboard, microphone, light, screen, and GPS. RESULTS: Quantitative and qualitative analyses indicated that adolescents and parent endorsement and perceived utility of digital phenotyping varied by stream, though participants generally endorsed the use of data collected by passive stream (35%-75.7% adolescent endorsement for clinical use and 37.9%-74.8% for research purposes; 53.5%-81.8% parent endorsement for clinical and 52.5%-82.8% for research purposes) if a certain level of utility could be provided. For adolescents and parents, adjusted logistic regression results indicated that the perceived utility of each stream significantly predicted the likelihood of endorsement of its use in both clinical practice and research (Ps<.05). Adolescents and parents alike identified accelerometer, light, screen, and GPS as the passive data streams with the highest utility (36.9%-47.5% identifying streams as useful). Similarly, adolescents and parents alike identified apps, Bluetooth, SMS text message and call logs, keyboard, and microphone as the passive data streams with the least utility (18.5%-34.3% identifying streams as useful). All participants reported primary concerns related to privacy, accuracy, and validity of the collected data. Passive data streams with the greatest number of total concerns were apps, Bluetooth, call and SMS text message logs, keyboard, and microphone. CONCLUSIONS: Findings support the tailored use of digital phenotyping for this population and can help refine this methodology toward an acceptable, feasible, and ethical implementation of real-time symptom monitoring for assessment and intervention in youths with chronic pain.

Transforaminal lumbar puncture for spinal anesthesia or novel drug administration: a technique combining C-arm fluoroscopy and ultrasound.

BACKGROUND: Lumbar puncture (LP) may be challenging for patients with scoliosis and other conditions following previous posterior fusion and instrumentation from thoracic to sacral levels. Interventional radiologists have described CT approaches to transforaminal LP. We hypothesized that combined C-arm fluoroscopy and ultrasound could be a feasible approach to transforaminal LP for interventional pain physicians and regional anesthesiologists. METHODS: With institutional review board approval, we reviewed medical records and imaging of six patients with spinal muscular atrophy and prior spine fusion. Non-cutting needles of 24 or 25 gage were advanced through 20-gage introducers. Prior imaging guided selection of a preferred side and spinal level. Initial procedures were performed in the interventional radiology suite. Subsequent procedures were performed in an operating room (OR). We report on technical success and complications and describe a case using this approach for spinal anesthesia. RESULTS: Six patients underwent a total of 54 transforaminal LPs, including 51 for administration of the antisense oligonucleotide nusinersen, 2 for myelography, and 1 for spinal anesthesia; 45 of these procedures were performed using OR C-arm fluoroscopy and ultrasound. Transient paresthesias and short-term headaches occurred; none required intervention. No other complications were noted. CONCLUSIONS: Transforaminal LP appears technically feasible for patients with full-spine fusions using a straight-needle approach with combined fluoroscopy and ultrasound guidance. Larger case series and prospective studies may better define the success rates, risks, and benefits of this approach relative to alternative approaches to intrathecal access for patients with previous long-segment posterior spine fusions.

Pediatric Intracranial Hypotension and Post-Dural Puncture Headache.

Pediatric intracranial hypotension can occur acutely following iatrogenic dural puncture for diagnostic or therapeutic purposes, or chronically from cerebrospinal fluid leak. The incidence of intracranial hypotension in children is not fully known. However, many steps can be taken to reduce the risk of a child developing a post-dural puncture headache. Other causes of intracranial hypotension, such as spontaneous intracranial hypotension or CSF fistulas, are rare and with little pediatric data to guide evaluation and management. This manuscript reviews the risk factors, diagnostic evaluations, and treatments for post-dural puncture headache, as well as a limited discussion of spontaneous intracranial hypotension as it may pertain to children and adolescents.

Epidural catheter placement in children with baclofen pumps.

BACKGROUND: Children with cerebral palsy often suffer from increased tone, which can be treated with intrathecal baclofen via implanted pump. Additionally, they often require major orthopedic surgery for hip reconstruction; however, the presence of an intrathecal baclofen pump is a relative contraindication to regional anesthesia due to concerns about damaging the intrathecal baclofen pump system. AIMS: (a) To evaluate adverse events related to placing epidural catheters in children with intrathecal baclofen pumps and (b) describe our multidisciplinary approach to the care of these complex patients. METHODS: Children with cerebral palsy and intrathecal baclofen pump in situ who underwent hip reconstruction between 2010 and 2019 and had a perioperative epidural placed were reviewed retrospectively. Charts were assessed for adverse events or intrathecal baclofen complications. Fluoroscopic images were reviewed to evaluate the proximity between epidural and intrathecal baclofen catheters. The process of coordinating multiple services was examined. RESULTS: Sixteen children met the inclusion criteria. There were no major complications following epidural placement. Postoperative pump interrogation was normal for all patients. Fluoroscopy was utilized for 9/16 (56%) epidural procedures. Epidurogram was used to confirm 11/16 catheters (68%). Children with an intrathecal baclofen pump were identified by orthopedic surgeons at the time of surgical booking and referred to the regional anesthesia team for review. The neurosurgical, pain, and regional anesthesia teams determined the appropriateness and safety of approaching the neuraxis. Pain and/or regional anesthesiologists with competency in spine fluoroscopy were scheduled on the day of surgery for fluoroscopically guided epidural placement. Postoperatively, catheters were managed by the acute pain team. Intrathecal baclofen pumps were interrogated by the baclofen pump team prior to patient discharge. DISCUSSION: In this case series, not only was epidural placement feasible but also there were no observed complications. This work highlights the importance of a multidisciplinary approach to complex regional anesthetic techniques, as well as the importance of basic competency in spine fluoroscopy for regional anesthesiologists.

Patient-Customized Oligonucleotide Therapy for a Rare Genetic Disease.

Genome sequencing is often pivotal in the diagnosis of rare diseases, but many of these conditions lack specific treatments. We describe how molecular diagnosis of a rare, fatal neurodegenerative condition led to the rational design, testing, and manufacture of milasen, a splice-modulating antisense oligonucleotide drug tailored to a particular patient. Proof-of-concept experiments in cell lines from the patient served as the basis for launching an "N-of-1" study of milasen within 1 year after first contact with the patient. There were no serious adverse events, and treatment was associated with objective reduction in seizures (determined by electroencephalography and parental reporting). This study offers a possible template for the rapid development of patient-customized treatments. (Funded by Mila's Miracle Foundation and others.).