Expanding Knowledge and Information Delivery Around Improving Upper Extremity Function After Cervical Spinal Cord Injury
Abstract
Objectives: Our overall goal is to improve arm and hand function in people living with life-changing cervical spinal cord injury (SCI). Surgery, including newer nerve transfers and traditional tendon transfers, can restore function. Our group of experts has developed a surgical decision aid (DA) to help with complicated decision-making based on personal preferences and the pros and cons of surgery and/or other rehabilitation treatments. However, we found that people with SCI rarely see surgeons or receive any information about these available options. This lack of information is concerning because in some cases, nerve transfer works best if done within 1 year after SCI. Our previous work shows that from 6-12 months after injury, natural recovery slows down. People need timely information to make informed decisions and keep the opportunity to have early surgery if it fits their needs and preferences. Rationale for This Proposal: Our new DA, for people with SCI who are thinking about treatments to recover arm and hand function, improves knowledge and decision outcomes. But we need to know (1) how many people would lose the opportunity to undergo nerve transfer if they wait more than 1 year and (2) how to best spread this information to non-surgeon healthcare providers so that they can inform individual with SCI about options before they lose the opportunity. Applicability, Impact and Populations: In our study and in previous research, people with SCI and their caregivers state they would like to receive information (particularly about surgery for the arm and hand) early and often as their goals and ideas may change. Many want to get information from their trusted rehabilitation healthcare providers compared to online sources. This project will involve a database, people living with cervical SCI and non-surgeon healthcare providers. First, we will use information collected in a database to find out what percentage of people with cervical SCI will lose the option of nerve transfer surgery if they wait more than 1 year after injury. This information will be added to the DA. Next, we will develop a map that shows how people with SCI move through the healthcare system. Finally, we will design and test a Toolkit for non-surgeon healthcare providers to help them learn about and introduce the DA to the people they care for. This will directly help people living with SCI and their caregivers. Clinical Applications, Benefits and Risks: The DA and Toolkit will be immediately available for clinical use. These materials will be able to give information about possible treatments to improve hand and arm function. Information empowers people to make evidence-based treatment decisions. The main risk is that some of these surgeries may not be available in all local healthcare settings. Time to Achieve a Person Related Outcome: This clinically applicable project will take 3 years to construct the deliverables: information on candidacy, a healthcare process map, and the Toolkit to complement DA. Contribution of the Project: This project will directly benefit people living with SCI by providing a source of essential information to make timely choices about restoring upper extremity function. Our approach, which incorporates SCI stakeholders and partners with health literacy, educational, and research expertise, will model a system for dissemination and implementation of new treatment options in complex populations.
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Dec 28, 2022
- Source ID
- W81XWH2210908
Entities
People
- Ida Fox
Organizations
- United States Army
- Washington University in St. Louis