Surgery to restore upper extremity function in tetraplegia—Preferences for early and frequent access to information

Abstract

Introduction People with cervical spinal cord injury (SCI) identify improving upper extremity (UE) function as a top priority. In addition to comprehensive rehabilitation, UE surgeries, including nerve and tendon transfers, enhance function. However, barriers exist to disseminating information about surgical options to enhance UE function. Objective To assess the experiences and preferences of people with cervical SCI and their caregivers in accessing information about surgery to enhance UE function. Design Prospective cohort study. Participants were followed up for 24 months and completed up to three interviews. Setting Tertiary care at academic and affiliated Veterans Administration Health Care Centers. Participants Adults with cervical SCI (n = 35) ages 18 to 80 years with mid‐cervical SCI American Spinal Injury Association Impairment Scale A, B, or C (at least 6 months post‐injury) and their caregivers (n = 23) were eligible to participate. Participants were enrolled in three groups: nerve transfer, tendon transfer, or no UE reconstructive surgery. Interventions Not applicable. Main Outcome Measure Semi‐structured interviews about surgical knowledge and experiences. Results Data were analyzed and three themes were identified. First, providing information about UE surgical options early post‐injury was recommended. The acute or inpatient rehabilitation phases of recovery were the preferred times to receive surgical information. Second, challenges with information dissemination were identified. Participants learned about UE surgery through independent research, medical provider interactions, or peers. Third, peers were identified as valuable resources for SCI needs and surgical information. Conclusions Following cervical SCI, information about UE reconstructive surgeries should be a standard component of education during rehabilitation. An increased understanding of the reconstructive options available to improve UE function is necessary to educate stakeholders. Future research is needed to support the development of strategies to effectively present surgical information to individuals with SCI and health care providers.

Assessing an Online Patient Decision Aid about Upper Extremity Reconstructive Surgery for Cervical Spinal Cord Injury: Pilot Testing Knowledge, Decisional Conflict, and Acceptability

“…5,30,31,34 People with spinal cord injury use the Internet but also rely on getting information from their trusted healthcare providers-physical medicine and rehabilitation, spinal cord injury specialists, and occupational and physical therapists, among others. 29 These nonsurgeon clinicians often lack access to information and knowledge about these treatment options and may have biases against some or all of these surgical treatments. 33,58,59 A recent United States study found that only 8% of eligible individuals underwent this restorative surgery.…”

“…The determination to create an online tool was informed by our previous research, which showed that people with spinal cord injury prefer the use of computers, phones, and tablets for accessing health information. 29 The content of the PtDA was informed by the current literature, results from the European Multicenter Study about Spinal Cord Injury (EMSCI), 39 and a prospective mixed-methods cohort study of people living with cervical spinal cord injury (who did and did not undergo surgery) and their caregivers. 40 – 42 Information was summarized and incorporated into the PtDA.…”

“…17,[24][25][26] Few eligible people with spinal cord injury undergo these surgeries. 27,28 There are multiple barriers to care including a lack of 1) information about treatment options, [29][30][31] 2) cross-specialty collaboration/referrals, 32,33 and 3) provider availability. 5,34,35 To overcome this first barrier, detailed information is needed to support informed, preference-consistent choices about appropriate treatment.…”