Decision support tool to help families choose spinal surgery for children with neuromuscular scoliosis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This pilot hybrid type I efficacy/implementation trial will compare usual care to use of a newly developed decision support tool during surgical consultations for pediatric neuromuscular scoliosis at two academic centers. Parent-child dyads (ages 8–21) and participating surgeons will receive the tool or usual care in English or Spanish and researchers will track the treatment chosen, measures of decision quality, and short-term affective, cognitive, and behavioral outcomes. The study will also collect feasibility, acceptability, and implementation barriers and facilitators from families and clinicians. Findings will inform effect size estimates, refinements to the tool, and the design of a larger effectiveness trial.

Why it matters

Who can join: the full rules

Inclusion criteria:

* Parent-child dyads of children with neuromuscular scoliosis who speak English and Spanish.
* Child is between ages 8-21 years of age and they are coming into the pediatric orthopaedic surgery clinic for consultation about potential surgery for NMS.
* NMS is defined as having neurologic impairment (NI) and scoliosis using relevant ICD-9 or ICD-10 codes from Feudtner, et al. 2014 or Berry, et al. 2012. or a qualifying diagnosis per the Pediatric Spine Study Group definition of NMS.
* All pediatric orthopaedic surgeons and neurosurgeons who treat neuromuscular scoliosis at our study sites will be eligible participants.

Exclusion criteria:

* Families whose child with NMS is less than 8 years of age at time of orthopaedic consultation because surgery at a younger age usually indicates an atypical case.
* Children with the diagnosis of Becker's muscular dystrophy due to potential disease modifying therapies that may alter curve progression.

Where it's running

• Children's Hospital Los Angeles
  Los Angeles, California, United States Recruiting
• University of Utah
  Salt Lake City, Utah, United States Recruiting

Study contacts

• Principal investigator: Jody Lin, MD, MS — University of Utah
• Study coordinator: Angela Zhu, BS
• Email: angela.zhu@hsc.utah.edu
• Phone: 801-662-3675

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.