Identifying barriers to upper extremity reconstruction in tetraplegia: a systematic scoping review.

STUDY DESIGN Systematic scoping review OBJECTIVES: The purpose of this study was to understand the barriers to accessing upper extremity (UE) reconstructive surgery among those living with tetraplegia, and to identify gaps in knowledge. METHODS Using standardized scoping review methods, a literature search was conducted using four databases and 1069 articles were procured. Two independent reviewers systematically screened the articles in two phases. Retrieved articles underwent thematic analysis using a constructivist grounded theory methodology. RESULTS The reviewed articles (n = 25) were published between 2002 and 2019, and study designs included: cross-sectional (64%), retrospective (16%), and review articles (8%). Common barriers to UE reconstruction were categorized into factors related to patients, providers, and systems. These general domains included lack of awareness of UE reconstruction and its benefits among people with tetraplegia and providers, poor interdisciplinary working relationships, and a lack of specialized centers that provide these reconstructive surgeries. Specific patient-related barriers related to intrinsic (coping skills, trust, fear) and extrinsic (support network, finances, postoperative course) factors that influenced decision-making. CONCLUSIONS There are many barriers that prevent individuals with tetraplegia from accessing surgery at different levels of the healthcare system. Establishing specialized centers with strong interdisciplinary working relationships and raising awareness about the advantages and disadvantages of UE reconstruction through peer networks may help to improve accessibility. Using a value-based, patient-centered approach by exploring how individuals with SCI weigh each decision factor when considering surgery may help providers develop treatment options that better align with their goals.