Getting a grip on it: people with tetraplegia making the decision about upper limb surgery

Abstract

Background: Surgical techniques to improve strength and function in paralysed upper limbs in people with tetraplegia have been available since the early 1970s. These techniques improve upper limb function and quality of life. However, an increasing number of those who are potentially eligible choose not to undergo surgery.

Aim: The aims of this study were firstly to describe the demographics of the people who sustained a cervical spinal cord injury (SCI) in New Zealand (NZ) and were eligible for upper limb reconstructive surgery (ULRS), how many had surgery, and if there were any differences between those who had ULRS and those who did not. Secondly, to explore the issues that influence the decision making process of people with tetraplegia regarding ULRS.

Methodology: A two phase mixed methods study (quan then QUAL) was undertaken comprising an epidemiological study (Phase 1) that informed a grounded theory study of the decision making process (Phase 2).

Methods: Phase 1, a retrospective clinical case review, described the clinical characteristics of all people who sustained a cervical SCI and were discharged from a NZ spinal unit in a five year period. In Phase 2, 22 people with tetraplegia identified in Phase 1, and selected using theoretical sampling, were interviewed. Data analysis, using grounded theory techniques focused on the issues the person with tetraplegia experienced when making a decision of whether to undergo ULRS, and what influenced their decision. Data from both phases were used to develop a conceptual framework to describe the decision making process.

Results: Phase 1 showed that the uptake of ULRS in NZ was 44% of the eligible population. This was six to eight times higher than the reported rates in the USA. However, women and NZ Māori were under-represented in the surgery group. In Phase 2, issues influencing decision making in all participants were the hope for the cure or recovery from SCI, inadequate physical environment or social supports while rehabilitating and avoidance of re-hospitalisation. In addition, women identified the appearance of the hand, the loss of independence and need for increased care while rehabilitating as issues. However, these issues were not static, often changing in importance or relevance as time progressed. The conceptual framework developed illustrated the liminal state many participants entered during the decision making process and a stimulus was often required to review their decision about ULRS.

Conclusion: A retrospective review of persons eligible for surgery found NZ is doing well with the number of people electing to have ULRS, especially NZ European males. The first grounded theory study of people with tetraplegia and their decision making around ULRS suggests that multiple offers of ULRS need to be made to people with tetraplegia throughout their lifetime. Recommendations for future research include a larger prospective analysis on the uptake of ULRS. This would allow more robust statistical analysis of the associations between demographic and other predictor variables and the decision for surgery and would also collect data about the number of times ULRS was offered. In addition, exploration of the impact of changes to surgery and rehabilitation (such as the options of unilateral surgery and outpatient based rehabilitation) is suggested.