Bivariate analysis included the chi-square test for comparisons of proportions and the Student t test for comparisons of means. For the analysis of the Likert scale responses, we used the Wilcoxon rank-sum test. We constructed a multivariable model to test the hypothesized barriers of care. This model had one main outcome of interest or dependent variable (whether people with Tetraplegia wanted upper-extremity reconstruction or not). Logistic regression analysis was performed to examine the associations between the predictor and dependent variables. For clarity in data presentation, we present Likert scale responses in a dichotomized form, showing the positive (strongly agree or agree) versus the neutral/ negative attitudes (neutral, disagree, strongly disagree). All analyses were performed using statistical software (Stata 9.0; Statacorp, College Station, TX).

Results

The oral survey was offered to 58 people with tetraplegia, of whom 50 chose to participate (86% of the eligible subjects). None of the survey responders had a history of prior upper-extremity reconstructive surgery, and there was no notable difference in gender between the responders and nonresponders (gender was the only data available on the nonresponders). After completion of the survey, participants were offered the opportunity to withdraw from the study. No survey participants chose to withdraw. Respondents' demographic characteristics are shown in Table 1. The surveyed sample was predominantly male 35 (70%), Caucasian 45 (90%), with an average age of 40 years. These results are comparable with the general US spinal cord population except that our sample had a higher percentage of Caucasians than national averages (90% vs 66%).22 The average time from injury was 12.8 years, ranging from 1 to 42 years.

Our first hypothesis was that people with tetraplegia might not be aware of upper-extremity reconstructive procedures. To assess this question, we asked people with tetraplegia if they had ever heard about surgical procedures to improve upper extremity use, and, if so, where they learned about these procedures (Fig. 1). Overall, 13 (26%) of those surveyed were unaware of the possibility of upper- extremity reconstructive surgery, 15 (30%) were introduced to these procedures by their physicians, 7 (14%) learned from friends, 4 (8%) had learned about these procedures from their support group meetings, and 4 (8%) learned about these procedures from information they found on the Internet.

Our second hypothesis was that improving upper-extremity function may not be a high priority for people with tetraplegia. We assessed this by asking the participants to rank physical functions in the order they would want them restored (Fig. 2). We found that upper- extremity function was by far the top restoration desire, with 21 (42%) of those surveyed ranking upper-extremity function as the function they would want restored first. Smaller numbers of patients chose bowel function 12 (24%), bladder function 7 (14%), lower- extremity function 8 (16%), and sexual function 2 (4%).

Our third hypothesis was that the highly Functional subset of people with tetraplegia was less interested in reconstruction. We approached this topic by constructing an upper-extremity functional Disability index (scale, 0-3). Those individuals with scores of less than or equal to 2.0 (those able to complete activities of daily living tasks requiring use of the upper extremities) were classified as high functional. Individuals with index scores of greater than 2.0 have more severe functional deficits and were classified as low functional. We found no statistically significant difference between the high- and low-functional groups. Only a small percentage of both groups were satisfied with their current hand function (3 (19%) vs 5 (15%), p = .9). In addition, both the high- and low-functional groups believed that these procedures would improve their independence (13 (81%) vs 30 (88%), p = .79). Finally, when evaluating attitudes toward surgical reconstruction, we noted that although members of the high-functional group were less likely to report that these procedures would improve their quality of life, this difference was again not significant (11 (69%) vs 30 (88%), p = .93). The results of this analysis are summarized in Table 2.

We hypothesized that negative patient educational information may be discouraging people from pursuing upper-extremity reconstruction. We were especially interested in how the initial presentation of these reconstructive procedures affected subsequent patient opinion. We asked each of the individuals with tetraplegia who expressed familiarity with upper-extremity reconstruction 37 (74%) of those surveyed) where they had learned about these procedures, and whether their feelings toward these procedures after the initial presentation were positive or negative. A large percentage of this group 14 (38%) said they had a negative first impression of upper- extremity reconstruction. Individuals who had a negative first impression of these procedures were less likely to want reconstruction O (0%) vs 11 (45%). To better understand what was generating these negative perceptions, we looked at the patients' initial source of information about upper-extremity reconstruction and compared it with their perceptions of the procedures (Table 3). Many of those surveyed learned about upper-extremity reconstructive procedures from physicians. These physician encounters were with their primary care physicians or physiatrists. We found that people with tetraplegia who learned about these procedures from physicians were significantly more likely to have a negative first impression of upper-extremity reconstruction (10 (67%) vs 4 (19%), p = .004), less likely to believe that these procedures would improve their independence (9 (60%) vs 22 (100%), p = .01), and less likely to believe that these procedures would improve their quality of life (8 (53%) vs 21 (95%), p = .02). The greatest difference between those who learned from physicians and those who learned about these procedures from other sources, however, was their belief that the gains were worth the risk of surgery. Only 3 (20%) of those who learned about these procedures from physicians believed the gains were worth the risk of surgery compared with 18 (82%) of those who learned about these procedures from a different source (p < .001). These data point to the substantial influence of physician encounter and counseling on patient perceptions.

We hypothesized that concerns about the costs of surgery might discourage eligible candidates from pursuing upper-extremity reconstructive procedures. First, we assessed interest in these procedures and found it to be high, with 22 (44%) of those surveyed stating they wanted upper-extremity reconstructive surgery. Participants were then asked whether the cost, risk, recovery time, and availability of alternative assistive devices influenced their desire for these procedures. These results are shown in Table 4. We found that all of these concerns were prominent in the minds of survey participants. Of individuals surveyed, 20 (40%) noted the cost of the procedure, 25 (50%) quoted the recovery time after surgery, and 31 (62%) listed the risks of the surgical procedures as factors that influenced their desire for upper-extremity reconstructive surgery; 18 (36%) reported that having alternative assistive devices influenced their desire for the procedures. When we examined whether individuals with these concerns were actually less likely to want reconstructive surgery, however, we found that none of these concerns proved significant when desire for reconstructive surgery was analyzed using a logistic regression model (Table 5).

Table 4. Interest in Reconstructive Surgery, Patient Reported Influences

Controlling for gender, age, and time since injury, we found only one significant predictor associated with a patient desiring upper- extremity reconstructive surgery: not learning about these procedures from physicians was associated positively with patients wanting to have upper-extremity reconstruction. In other words, our model estimated an adjusted odds ratio of 15.7 for the variable "not learning from a physician" (Table 5), indicating that the odds of a patient wanting upper-extremity reconstructive surgery were 15.7 times more likely for a patient who did not learn about these procedures from a physician than those who did. Having a physician encounter about upper-extremity surgery decreased patient interest from having the procedures. Restoration priority, disability index score, and worries about costs/ risks/recovery times were not significant predictors.

Table 5. Variables Associated With the Likelihood of Desiring Upper-Extremity Reconstructive Surgery in Individuals With Tetraplegia