We already know that people with Tetraplegia desire improved upper-extremity function,14,15 and this study sought to assess their attitudes and beliefs toward upper-extremity reconstructive surgery, and explore the patients' perceptions of upper-extremity reconstruction. We examined several areas in which patient concerns, beliefs, or lack of knowledge may contribute to the underuse of the reconstructive option. Understanding the beliefs of people with tetraplegia can help physicians uncover where barriers exist and help facilitate access to care for this vulnerable population.

Materials and Methods

Subjects

Subjects recruited for this project were adults with Cervical spinal cord injuries ranging from the C4 to C8 level who had not had upper-extremity reconstructive surgery. We recruited participants from 2 different settings. First, a sample was obtained from patients who presented to a university spinal cord clinic for outpatient visits. second, we recruited people with a spinal cord injury in a community setting through a nonprofit organization that sponsors events for individuals with tetraplegia. The nonprofit organization identified people with tetraplegia who were willing to answer our questionnaire. All individuals with a C4 to C8 injury were offered the survey (a total of 58 people). Of those approached, 50 chose to participate in the survey, giving a response rate of 86%.

Table 2. Effect of the Severity of Upper-Extremity Disability on Opinion

Survey Design

The survey instrument was designed after discussions with people with a spinal cord injury, physicians, and experts on survey design,16 and with the following aims in mind. First, we wanted to assess patient awareness of upper-extremity reconstructive procedures to determine whether upper-extremity function is a priority for this group. second, we wanted to explore potential barriers to having the procedures, including costs of surgery, surgical risks, inconvenience, and loss of independence. Third, we wanted to explore the possibility that physicians are discouraging patients from pursuing these procedures.

These discussions generated several hypotheses on the patient factors that may contribute to the underuse of upper-extremity reconstruction. These hypotheses were as follows: (1) people with tetraplegia are not aware of upper-extremity reconstructive procedures, (2) upper-extremity reconstruction is not a high priority for people with tetraplegia, (3) highly Functional individuals with tetraplegia do not want surgical reconstruction, (4) current patient education dissuades people with tetraplegia from pursuing these procedures, and (5) the risks and costs of surgery discourages eligible candidates from pursuing upper-extremity reconstructive surgery.

Table 3. First Presentation of Upper-Extremity Reconstructive Surgery and Its Effects on Subsequent Attitudes

The design of this survey was based on several sources. First, disability of the participants was assessed by using questions derived from the disability dimension of the Stanford Health Assessment Questionnaire.17 Survey participants were asked 14 questions covering 4 component areas: dressing and grooming, reach and grip, eating, and hygiene. Each of these components included 2 to 5 questions drawn from previous measures.18 Participants recorded the difficulty of completing activities that required use of the upper extremities. Each response was scored on a 4-point scale of ability patterned after the American Rheumatism Association functional classification.19 Response options ranged from "without any difficulty" to "unable to do." The highest score in each of the 4 components was added to form a total (range, 0-12). The total score was divided by 4 to provide a score of O to 3, termed the upper-extremity functional disability index.20 Disability scores were interpreted by using an adaptation of prior published guidelines: 0.0 to 0.5, the patient is self sufficient; 0.6 to 1.25, the patient is reasonably self-sufficient but experiences some difficulties performing upper-extremity activities of daily living; 1.26 to 2.0, the patient is selfsufficient but has many major difficulties; and 2.1 to 3.0, the patient is considered severely disabled.21 Additional items in this survey questionnaire were taken from our previous national survey instrument.13 We added new question items on demographic factors, the timing of the injury, and how patients learned about upper-extremity reconstruction. The survey took approximately 15 minutes to administer. Because of subject difficulty in filling out the survey, the survey was administered verbally. To minimize survey bias in potentially influencing the responses of the participants, we presented a standard descriptive summary of the survey to every participant. Participants were not informed of the specific aims of the study until after the survey was completed. On completion of the survey, a history of prior upper-extremity reconstructive surgery was screened, specific aims of the study were shared, and participants were given the opportunity to withdraw from the study. Because the data were of a sensitive nature, formal Informed Consent was obtained before the survey was administered. Data collection occurred between August 2005 and February 2006, after approval by the university institutional review board.

Figure 1. People with tetraplegia were asked whether they had heard of upper-extremity reconstructive surgery, and, if so, w\here they had learned about these procedures. Percentage of individuals surveyed who were unaware of upper-extremity reconstruction and the source of knowledge for those familiar with these surgical procedures.

Figure 2. Percentage of people with tetraplegia who rated restoring upper-extremity, bowel, bladder, lower-extremity, and sexual function as their most important reconstruction desire.