Researching the Most Recent Groundbreaking Fusionless Scoliosis Surgery

The Crawford Spine Center at Cincinnati Children’s Hospital Medical Center is an active site with contributions to the Pediatric Spine Study Group (PSSG) for over 12 years. PSSG is an international, multi-site study group collaborating on improving spine pediatric patient outcomes. Viral Jain, MD, joined in a prospective clinical research study in the study group observing the anterior vertebral body tethering (AVBT). AVBT is a novel, minimally invasive growth modulation technique recently approved by the FDA under a Humanitarian Device Exemption. The goal of AVBT is to control curve progression by applying compression on the convex side of the spine deformity. While is great initial enthusiasm about the technique as an alternate treatment option to spinal fusion for skeletally immature children with scoliosis, there is a need to understand the long-term outcomes better.

In addition to understanding the effect of AVBT on radiographic and clinical parameters, it is also important to understand the parameter of growth velocity. Growth velocity is difficult to determine because skeletal growth is slow and clinical tools to detect very small increments of growth accurately do not exist. CXM, for Collagen X Marker1, is a benchmarked marker in children. This marker corresponds to the rate of linear bone growth at time of measurement. Using this in this population will allow us to determine amount of growth remaining to better time intervention.

Peter Sturm, MD, MBA, and Jain continue to actively participate in numerous multi- and single-site research studies investigating pediatric spine outcomes. Future studies using the data collected will look at patient-reported outcomes and how to enhance on continuing to provide excellent patient care.

Research Expansion for Pediatric Knee and Elbow Outcomes

Approximately ten years ago, Cincinnati Children’s Hospital Medical Center's Division of Pediatric Orthopaedics joined the national and international consortium Research in Osteochondritis of the Knee (ROCK). Eric Wall, MD, spearheaded the clinical research study contributing in developing the first comprehensive database of knee osteochondritis dissecans (OCD) cases. OCD, diagnosed most commonly in children and young adults, has a significant lifetime impact on patients and their families. Treatment of OCD of the knee ranges broadly from no intervention to non-operative treatment to various surgical techniques, ranging from early knee surgeries to late knee surgeries. Through this cohort, we continue to collect data and outcomes for all patients with a confirmed diagnosis of OCD and / or focal articular cartilage defect of the knee, hereby referred to collectively as OCD. We will follow their course of care for the duration they seek treatment, up to 50 years if applicable.

After creating a successful conduit, the ROCK study group led to the decision to expand this research platform to encompass elbow OCD. Wall and Kevin Little, MD, will lead investigators contributing to research for Cincinnati Children's. The purpose of this prospective study is to create the first centralized, comprehensive database of elbow OCD cases to act as a platform for future studies on OCD, providing the institutions that are part of ROCK with a large database including the different types of elbow OCD lesions and variables associated with the disease characteristics, course of treatment and healing, and long term follow up. Projects stemming from analysis of information collected in the cohort will help develop better understanding of the disease and its causes, progression, and the best treatment patients with OCD can receive based on their history and lesion characteristics.

Patient and Family Experience with a Multi-Disciplinary Approach to Hip Preservation Program

Cincinnati Children's established the Hip Preservation Program because chronic hip pain is rising, especially in the younger population. Typical treatment paths include conservative treatment by a physical therapist or surgical intervention performed by a specialized hip surgeon. There is currently no standard of conservative care for these chronic hip patients. There is also no standard of communication between the hip surgeon and physical therapist on conservative management or failure of conservative management for these patients. Families can feel overwhelmed with information when there is a lack of cohesive education from various members of their care team. This study will look at improving the patient / family experience with an interdisciplinary approach to care within a hip preservation clinic.

This study aims to report on the patient / family experience of being evaluated in the presence of an interdisciplinary care team, including but not limited to a hip surgeon, physician assistant, physical therapist, and nurse, versus in a more traditional clinical setting where patients receive a referral to a physical therapist with little to no understanding of what the therapist will address or how they will address their specific complaints and concerns. Patients prescribed physical therapy will have their charts and patient / family experience reviewed to look at outcome information during their clinical follow-up appointments in the presence or absence of a physical therapist.

Lived Experience of Adults with Brachial Plexus Birth Injury LEAP

While occurring at birth, approximately 30% of children with brachial plexus birth injury (BPBI) experience chronic disability. However, the long-term global health concerns of adults living with this condition are not well known. A mixed-methods study, led by Jenny Dorich, PhD, and Roger Cornwall, MD, administered surveys through two international social media groups for individuals with BPBI. The study also conducted one-on-one interviews with adults with BPBI to gain understanding of the breadth and depth of health-related quality of life concerns (HRQoL) of adults with BPBI.

Aim 1 elucidated the breadth HRQoL concerns among adults with BPBI. Among the 183 respondents, 60% reported BPBI impacts their general health, with the predominant health concerns being pain (in affected extremity and elsewhere), mental health concerns (especially depression and anxiety), and symptoms in the unaffected upper extremity (generally attributed to compensatory overuse). Seventy-three percent of respondents reported BPBI impacts their quality of life, with qualitative concerns most frequently including self-esteem, relationships and appearance. However, respondents qualitatively described overall good quality of life, with some even citing positive impacts of their BPBI. Seventy-nine percent of respondents reported BPBI impacts activity participation, with leisure activities and activities of daily living impacted most often, predominantly through altered range of motion, strength, and pain. Podium presentations on abstracts of Aim 1 findings occurred at the American Society for Surgery of the Hand (ASSH) and American Society of Hand Therapists (ASHT) annual meetings.

A diverse sample of 12 adults with adult BPBI participated in 1:1 semi-structured interviews in Aim 2 to gain an in-depth understanding of the lived experience of adults with BPBI. The following three themes emerged: (1) The experience with BPBI is lifelong and varies among affected individuals, (2) BPBI impacts many biopsychosocial domains, and (3) Opportunities exist to improve knowledge, awareness and care for adults with BPBI. Additional analysis of Aim 1 and Aim 2 data included ICF-linking of the qualitative data to inform the selection of PROMs for Aim 3.

For quantitative assessment of the impact of BPBI in adulthood in Aim 3, the PROMs identified through ICF linking of Aims 1 and 2 data administrated through the social media groups used in Aim 1. One hundred and seventy-four participants completed the following PROMs: The PROMIS® measures for global health, pain interference, depression, anxiety, emotional support, and satisfaction with social roles and activities; Neuro-QoL Stigma; Disability of the Arm Shoulder and Hand (DASH); Modified Satisfaction with Appearance Scale (SWAP); and the Health Literacy Questionnaire (HLQ). In this sample, global physical health, global mental health and social roles and activities correlated with how participants rated their overall HRQL. Additionally, health literacy, emotional support, stigma, appearance, anxiety, depression and pain all correlated with overall HRQoL. The sample reported greater pain, anxiety, depression and disability than the normal population. Thus, existing musculoskeletal literature may not be measuring what is important to patients and families, and this finding simply reinforces the overall strategy used in the current study to first identify then quantify the health impacts of BPBI. The Plexus Nexus Annual Meeting in Boston, MA, will have a presentation on the quantitative analysis from Aim 3 data. Manuscripts of study findings are in progress.