Checkpoints to Progression: Qualitative Analysis of the Personal and Contextual Factors That Influence Selection of Upper Extremity Reconstruction Among Patients With Tetraplegia

Abstract

Purpose Patients with tetraplegia consistently rank better use of the upper extremity as their top functional priority. Multiple case series have demonstrated that Upper Extremity Reconstruction (UER) is well-tolerated and can produce substantial functional improvements for appropriate candidates; however, UER remains critically underutilized. The mechanisms that drive differences in provider practice and referral patterns have been studied, but comprehensive examination of the patient factors that influence UER decisions has not been performed for American patients. Methods Nineteen patients with C4-C8 cervical spinal injuries were selected using purposive sampling: 9 patients had undergone UER, 10 had not undergone UER. Semi-structured interviews were conducted and transcripts evaluated using grounded theory methodology. Results Our study yielded a conceptual model that describes the characteristics common to all patients who undergo UER. Patients who selected reconstruction proceeded stepwise through a shared sequence of steps: 1) functional dissatisfaction 2) awareness of UER and 3) acceptance of surgery. Patients’ ability to meet these criteria was determined by three checkpoints: how well they coped, their access to information, and the acceptability of surgery. Extremely positive or negative coping prevented patients from moving from the Coping to the Information Checkpoint; thus, they remained unaware of UER and did not undergo surgery. A lack of knowledge regarding reconstruction was the strongest barrier to surgery among our participants. Conclusions We built a conceptual model that outlines how patients’ personal and contextual factors drive their progression to UER. Moving from functional dissatisfaction to understanding that they were candidates for UER was a substantial barrier for participants, particularly those with very high and very low coping skills. Clinical Relevance To improve utilization for all patients, interventions are needed to increase UER awareness. Standardizing introduction to UER during the rehabilitation process or improving e-content may represent key awareness access points.

Leveraging the Medical Context to Increase Upper Extremity Reconstruction Among Patients With Tetraplegia: A Qualitative Analysis

“…We employed iterative (transcripts were re-analyzed every time a new theme arose) and emerging (explanatory ideas are identified and explored in depth) analysis throughout data collection to identify developing themes. 34 The interview guide was amended to expand questioning around emerging themes after interviews 7 and 12, as previously published 35 We continued recruitment until interviews demonstrated conceptual saturation, the point at which interviewing additional participants did not generate new themes. All interviews were audio recorded and transcribed verbatim.…”

“…Definitions were added for each code and sub-code. 35 After completing training to unify methodology, an additional 4 reviewers joined the process. Ten transcripts were double-coded and reviewed in one-on-one meetings to ensure consistency, after which time a single investigator coded the remaining nine using NVIVO (QSR International Pty Ltd.…”

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

“…Due to paralysis involving the upper extremity, individuals with cervical-level spinal cord injury require varying levels of assistance with many activities of daily living (ADLs), including feeding, bowel/bladder function, locomotion (with the assistance of a wheelchair), and transfers (from bed to chair/vehicle). As such, restoration of upper extremity function is a priority, 4,5 and small improvements can result in substantial gains in independence with ADLs, self-esteem, and autonomy [6][7][8] and may reduce the $3 to $5 million US dollars in lifetime care costs for a single person with spinal cord injury. 9 Most spontaneous recovery of movement and muscle strength occurs within 6 to 12 mo of injury.…”

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

“…In the SCI community, there is limited awareness that UE surgery is an option to enhance hand function. 3,17 Others may have difficulty finding and understanding inaccessible and complex health information, physically accessing resources, 17 navigating health care systems, 4 or are not referred to UE surgeons. 3 The variable surgical outcomes after UE surgery in SCI 10,12,18 may have resulted in low adoption of nerve and tendon transfer surgeries; however, recent work supports their benefit.…”

“…Individuals with SCI experience multiple barriers to accessing specialized surgical care. In the SCI community, there is limited awareness that UE surgery is an option to enhance hand function 3,17 . Others may have difficulty finding and understanding inaccessible and complex health information, physically accessing resources, 17 navigating health care systems, 4 or are not referred to UE surgeons 3 …”