Purpose: In the United States, more than 100,000 Americans live with the Disability of Tetraplegia. These individuals must struggle through long and complicated rehabilitations. Upper-extremity reconstructive surgery can improve use of the upper limb for appropriate candidates; however, a prior national study showed that these procedures rarely are performed. This cross-sectional survey identified the attitudes and beliefs of people with tetraplegia that may dissuade potential candidates from receiving these procedures.

Methods: An oral survey was designed to determine priorities of reconstruction in individuals with tetraplegia. This survey was administered to 50 people with tetraplegia.

Results: Among those surveyed, 13 (26%) had never heard of upper- extremity reconstructive surgery, but 22 (44%) were interested in upper-extremity reconstruction. People with tetraplegia who had a negative first impression of these procedures were far less likely to want reconstruction 0 (0%) vs. 11 (45%). Of patients who learned about these procedures from their physicians, 10 (67%) had a negative first impression after the physician consultation.

Conclusions: Although many people with tetraplegia understand the benefits of upper-extremity reconstruction, a large number of them are unaware of or have unfavorable attitudes toward these procedures. These negative attitudes may account for the marked underuse of upper-extremity reconstructive procedures in the United States. (J Hand Surg 2007;32A:483-490. Copyright 2007 by the American Society for Surgery of the Hand.)

Key words: Survey, tetraplegia, preferences.

Upper-extremity reconstructive procedures for people with tetraplegia have been well described for more than 30 years. case series have shown that these procedures can improve upper-extremity function in appropriate candidates.1-8 Experts in this field, such as Moberg9 and Hentz et al10 have estimated that at least 65% of people with tetraplegia would benefit from some type of upper- extremity surgical intervention; however, a recent analysis of national databases showed that fewer than 10% of people with tetraplegia will have these procedures.11 As the primary providers of upper-extremity reconstruction, hand surgeons must take a leadership role in addressing this profound underuse. The goal of this study was to better understand the barriers limiting use of upper-extremity reconstruction for people with tetraplegia.

Health care resource use depends on the participation of the health care system, the health care provider, and the patient. Factors causing an underuse of a procedure include a lack of health insurance, physician doubts about the efficacy of an intervention, or general patient disinterest. For upper-extremity reconstructions, the health care system does not appear to be the major barrier because most patients with a spinal cord injury have health insurance coverage and these procedures are covered by Medicare.12 Health care providers may be contributing to the underuse of upper- extremity reconstructive surgery. It has been shown that the 2 specialties involved in upper-extremity reconstruction (hand surgeons, physiatrists) have differing views about these procedures. Hand surgeons are positive about upper-extremity reconstruction, with 96% stating that they would want these procedures themselves. Physiatrists have more concerns about the efficacy of these procedures, with far fewer physiatrists (63%) wanting these procedures for themselves.13 This interdisciplinary divergence in opinion, however, does not fully explain the profound underuse of upper-extremity reconstruction in the United States. To fully grasp this marked underuse of a proven effective procedure, we must understand the patient component.

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.

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

Health care resource use is a complicated phenomenon that is influenced by a myriad of factors. Interest and acceptance is critical to the delivery of health care. This study focused on the perception of potential patients about upper-extremity reconstructive surgery. We chose this question because there appeared to be a discrepancy between what people with tetraplegia want and the treatments they are receiving. Previous studies have suggested that upper-extremity function is a high priority for people with tetraplegia;15 however, there appears to be a profound underuse of procedures to enhance upper-extremity function in this population." The reasons for the un\deruse must be better understood because improving access to care for people with disabilities is a national health priority.23

Before looking into patient perceptions of upper-extremity reconstruction, it was important to establish whether people with tetraplegia were aware of upper-extremity reconstructive options. The acute rehabilitation after spinal cord injury focuses on a variety of life-saving interventions, such as pressure relief and urinary function care. In addition, the initial rehabilitative plan often is designed by physiatrists, who have little formal training in upper-extremity surgery. Therefore, patients may not be informed about the surgical options. We found that a large percentage of our participants 13 (26%) had not heard about upper-extremity surgery. This is particularly surprising when one considers that many of the patients had been injured for many years. For example, one surveyed individual commented, "All you ever hear about is technology to help people walk again. You never hear anything about improving hand use." The lack of awareness of upperextremity surgery clearly contributes to the underuse of these procedures. Of the people with tetraplegia who had heard of these procedures, the largest percentage learned about upper-extremity surgery from physicians. Other reported sources included support groups and the Internet. Ensuring that accurate information about these procedures is obtainable to potential patients should be a first step to improving access to this care.

People with tetraplegia face many challenges in their rehabilitation. Therefore, our second question examined whether improving upper-extremity function is a high priority for this population. Although patient perception is underrepresented in the literature, preliminary research has suggested that people with tetraplegia would be most interested in improving upper-extremity function.14 Our study confirmed that people with tetraplegia placed a high value on upper-extremity function. The largest percentage of individuals surveyed ranked upper-extremity function as their top restoration desire, far greater than bowel function, bladder function, lower-extremity function, and sexual function. Despite the many competing issues in the care of people with tetraplegia, upper- extremity function is of paramount interest to this population.

We hypothesized that current patient education discourages people with tetraplegia from pursuing upper-extremity surgery. Even a slight negative bias to the information received by patients about upperextremity surgery would influence their opinions because it is known that even subtle changes in the way medical information is presented can drastically affect patient perceptions.24 To assess if a negative bias was being propagated, we focused on our respondents' first impression of upper-extremity surgery. This is a critical question because first impressions remain surprisingly persistent.25'26 Our data showed that more than a third of our participants had a negative first impression of upper-extremity surgery. Receiving information about upper-extremity surgery from physicians was more likely to result in a negative attitude when compared with other informational sources.

Physiatrists coordinate injury rehabilitation programs and should be the main source of information about upper-extremity surgery for patients with spinal cord injury. We know that physiatrists have some reservations about these procedures, with 37% not wanting to have these procedures themselves.13 Physiatrists' concerns with these procedures do not appear to be overwhelming, but their hesitation appears to have a profound effect on using these procedures.11 These data suggest that to improve use of upper- extremity reconstructive procedures, the physiatrists are the important link. It is not surprising that even minor physician hesitation could take precedence over a patient's clear desire to improve upper-extremity function. This is because patients' medical decision-making processes are not always rational and physician recommendations are profoundly influential.27'28 The hand surgery community must participate actively in the educational programs of the physiatry organizations to promote our interest in serving this patient population.

We hypothesized that people with tetraplegia may have a negative impression of upper-extremity surgery because of surgical risk or cost. Before choosing surgical procedures, patients consider factors such as risk, cost, recovery time, and the availability of nonsurgical alternatives.29 We found that although all of these issues were prominent in the minds of people with tetraplegia, none of them were predictive of desire for upper-extremity reconstruction. A rehabilitative plan for tetraplegia patients, however, must include a realistic assessment of risks and benefits of these procedures to involve patients in the decisionmaking process.30"32

We do acknowledge the limitations of this project. This study was a limited geographic representation of the study sample. It is possible that local culture may affect the responses of the survey participants. Furthermore, we did not screen survey participants for spasticity, contractures, mental health issues such as depression, or other relative contraindications to surgery such as poor caregiver support. If a disproportionate number of survey participants were poor surgical candidates, some may conceivably have been given a realistically negative impression by their physiatrists. It is possible that a potential patient may place high priority on restoring upper-extremity function but choose not to have the surgical procedure after considering the risks and inconvenience of the surgical option. Overall, however, the findings from this survey support our prior published studies that the physician factor is the dominant reason for the national underuse of upper-extremity procedures for this group.

We began this study in an attempt to understand the underuse of upper-extremity surgery in the United States. We found that people with tetraplegia want to improve their upper-extremity function; however, many people have not heard of surgical procedures to improve function, and many of those who knew of these procedures had a negative impression. As the providers of upper-extremity reconstructive surgery, hand surgeons must take a leadership role both in a push for policy change and in the education of their fellow physicians. If hand surgeons are unwilling or unable to take this role, it is unlikely that the decrease in upper-extremity reconstruction will be reversed. We believe a constructive collaboration with physiatrist societies is the first step to jointly care for this population. In addition, patient education programs and ongoing discussions between physicians and patients about these procedures will empower people with tetraplegia to make rational decisions about upper-extremity surgery that can markedly affect their recovery.

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Jared P. Wagner, BS, Catherine M. Curtin, MD, David R. Cater, MD, Kevin C. Chung, MD

From the University of Michigan School of Medicine, the Department of Physical Medicine and Rehabilitation, and the section of Plastic Surgery, Department of Surgery, University of Michigan Ann Arbor, Ann Arbor, Ml; Hand Division, Stanford University, Palo Alto, CA; and the Veterans Hospital, Department of Veterans Affairs, Ann Arbor, MI.

Received for publication October 4, 2006; accepted in revised form January 19, 2007.

No benefits in any form have been received or will be received from a commercial party related directly or indirectly to the subject of this article.

Corresponding author: Kevin C. Chung, MD, section of Plastic Surgery, University of Michigan Health System, 2130 Taubman Center, 1500 E. Medical Center Dr, Ann Arbor, MI 48109-0340; e-mail: kecchung@umich.edu.

Copyright 2007 by the American Society for Surgery of the Hand

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