Introduction

Incidence of spinal cord injury (SCI) varies from 10.4 to 83 per million inhabitants per year worldwide. One-third of persons with SCI have tetraplegia.1 In the Netherlands, the incidence of SCI is 12.1 per million inhabitants per year. The incidence of SCI surviving the acute phase is 10.4 per million inhabitants per year.2

Cervical SCI (CSCI) has greater impact on person's life. Limited arm function caused by CSCI increases dependence on caregivers in self-care and daily functioning. Studies in the past have concluded that regaining arm–hand function was one of the highest priorities for persons with CSCI.3, 4 The majority of persons with tetraplegia (77–92%) expected improvement in quality of life if their hand function could be improved.5 It is estimated that over 50% of persons with tetraplegia would benefit from some form of upper extremity reconstructive surgery.6 At the end of conventional rehabilitation treatment, a decision regarding the need and/or the type of procedure could be made. Aim of these procedures is to improve elbow extension and pinch and palmar grips by series of transfers, tenodeses or arthrodeses. For full description of available procedures, we refer to the literature.7, 8

However, in practice, use of reconstructive upper extremity surgery is limited and until now it is not considered as a standard procedure. Anderson et al.6 tried to find an answer to the question why persons with tetraplegia did not undergo reconstructive surgery more often. They found three main reasons. First, the majority of persons with CSCI had never been informed about the possibilities of reconstructive surgery to improve their arm–hand function. Second, clinicians working in non-specialized centers were unaware of the possibilities of reconstructive surgery and last, persons with CSCI simply did not want to undergo the invasive operative procedures associated with reconstructive surgery. There is only level 4 evidence that supports the use of reconstructive surgery of upper limb in persons with tetraplegia for the improvement of activities of daily life (ADL) and quality of life. Despite the level of evidence, the subjective acceptance among patients for reconstructive surgery is high.9

Evaluation of results in literature is difficult mainly because of the diversity in operative procedures, neurological lesions and evaluation methods. However, in general, the results of reconstructive surgery to improve arm–hand function in persons with tetraplegia are favorable. The current literature describing clinical outcomes mainly consists of case reports.10 Results mainly describe functional outcomes such as muscle strength and ADL skills.11 There are limited data about patient satisfaction, activities and participation after reconstructive surgery in persons with tetraplegia. Some studies report about satisfaction of participants as well, however, this is usually evaluated using only a few, untested questions.11, 12, 13 These studies report that the majority of the participants are satisfied with the results of the surgery. Lo et al.12 described the outcome of tendon transfers for eight C6-spared quadriplegics (12 hands). They used the questionnaire of Lamb and Chan14 modified by Mohammed et al.15 Few questions were related to the level of satisfaction in this questionnaire. All of the operated persons with tetraplegia reported they would have surgery again, although two said that they would not consider surgery on the other side. Meiners et al.13 evaluated persons with tetraplegia before and after hand surgery (22 patients, 23 hands). Subjective satisfaction levels were determined by four questions. In total, 19 participants said that they would recommend the operation to others and 18 said they would have surgery again. Only two participants (out of seven working participants) stated the operation had a positive influence on their work. Forner-Cordero et al.11 reviewed the results of upper extremity surgery in 15 persons with CSCI. They also used the questionnaire of Lamb and Chan,14 modified by Mohammed et al.15 The results of their study showed that 87.5% of their population were satisfied with the operation, 42.8% of the participants felt that the operation had fulfilled their expectations, however, 57.2% expected better results.

Aim of the present study was to evaluate long-term patient satisfaction after reconstructive upper extremity surgery. In addition, improvement in activities is evaluated and general comments regarding the treatment are assessed. In the Netherlands, this has not been evaluated before.

Materials and Methods

Questionnaire

Stroh Wuolle et al.16 used a questionnaire in their study on satisfaction with upper extremity surgery in persons with tetraplegia in a selected American population (Appendix 1). They gave us permission to use the questionnaire for our study. The questionnaire was first translated into Dutch. Then the Dutch version was re-translated into English to make sure the Dutch translation conformed to the original questionnaire. The original questionnaire consisted of three parts. In part 1, the participants had to react to several statements on a five-point Likert scale (1=strongly disagree, 5=strongly agree). The questions were divided into eight areas: general satisfaction, life impact, ADL, independence, occupation, appearance, function over time and therapy. Part 2 consisted of questions about changes in the functional ability of participants after the surgery and their willingness to undergo the surgeries again. In part 3, participants had to list activities in which the surgeries were helpful and they were asked to give general comments on the surgery.

The local Medical Ethics Committees gave permission to use the questionnaire without further approval procedure, on condition that all data were stored anonymously in a database.

Participants

Persons with CSCI who underwent upper extremity surgery were identified in two rehabilitation centers in the Netherlands with an active ongoing upper extremity reconstruction surgery program for improvement of hand function in persons with tetraplegia. As a questionnaire was used for the study, participants had to be alive with a known current address. All of them were sent the questionnaire by mail and the answers were received by mail as well. In case persons did not respond, they were sent the questionnaire a second time. All participants gave written consent to investigate their medical records.

Data analysis

The internal reliability of the translated version was verified by factor analyses and calculation of Cronbach's alpha for different indices. All data were statistically analyzed by means of descriptive analysis, Spearman's correlation coefficients (two-tailed) and one-way analysis of variance. Results with P-value <0.05 were considered statistically significant.

Results

Participant characteristics

In total 55 persons with CSCI were considered suitable for the survey. Out of which, 39 (70.9%) returned the questionnaire, 15 did not respond and 1 questionnaire was returned because it could not be delivered.

Characteristics of the participant population, lesion level, the American Spinal Injury Association Impairment Scales17 and description of motor groups, according to the International Classification for Surgery of the Hand in Tetraplegia,18 of the participants are presented in Table 1a,1b,1c. Information of motor groups was available for 41 operated arms. In total 44 arms were operated. In total, 34 participants had surgery only on one extremity and five participants had surgery on both upper extremities. Most participants underwent hand/wrist surgery, 20 participants underwent elbow extension surgery. Details of these surgeries are shown in Table 2.

Table 1a Participant characteristics
Full size table
Table 1b Participants according to AIS classification and lesion level
Full size table
Table 1c Motor groups according to the International Classification for Surgery of the Hand in Tetraplegia (41 operated arms)
Full size table
Table 2 Operative procedures (44 operated arms)
Full size table

Questionnaire

Part 1 of the questionnaire in this study was divided into three factors, namely, satisfaction, activities and occupation, by implementation of a factor analysis. Cronbach's alpha was calculated for each factor. Cronbach's alpha for satisfaction was 0.95, for activities 0.93 and for occupation 0.91. On the basis of factor analysis, the following five questions were excluded from further analysis because of their unreliability:

  1. 1)

    The surgery has made a negative impact on my life.

  2. 2)

    I use less adaptive equipment after my hand/arm surgery.

  3. 3)

    I spend more time out in the community alone after my hand/arm surgery.

  4. 4)

    The appearance of my hand has improved since my hand/arm surgery.

  5. 5)

    I perform activities more like I used to before I was injured after my hand/arm surgery.

The results of part 1 of the questionnaire used in this study are presented in Table 3. The five unreliable questions are not shown. The participants’ reactions to questions in part 1 were generally positive except to those relating to occupation. The participants’ response to questions about satisfaction was in 73.5% positive, 14.8% neutral and 11.7% negative. The responses to questions about activities were 67.6% positive, 18.5% neutral and 13.9% negative. Responses to questions relating to occupation or schooling were positive in 35.0% of the participants, 43.5% neutral and 21.5% negative.

Table 3 Results of the questionnaire, part 1 (questions are classified by one of the three factors)
Full size table

The participants’ reactions to questions in part 2 were generally positive as well. Among the 20 participants who underwent elbow extension surgery, 30% stated that their ability to function was much better and 45% stated that their function was better. In total 36 participants underwent hand/wrist surgery and 47.2% of those said that their ability to function was much better and in 38.9% it was better postoperatively. In summary, 80.6 % of the responses were positive. Participants were asked whether they would choose to undergo the surgery again; 65% of them who underwent elbow extension surgery answered positive and 77.1 % of the participants who underwent hand/wrist surgery answered positive.

Spearman's correlation coefficients between participants’ readiness to have surgery again and their mean scores regarding the factors activities and occupation were: activities–elbow extension 0.63 (P=0.003), activities–hand/wrist 0.57 (P<0.001), occupation–elbow extension 0.53 (P=0.025), occupation–hand/wrist 0.57 (P=0.001). The correlations were all positive and significant, meaning that participants’ readiness to have surgery again correlated with a positive score on questions about activities and occupation. Differences in scores between the group who were willing to have surgery again and the group who would refrain were also significant; one-way analysis of variance for activities F=9.54, P<0.01 and for occupation F=6.60, P<0.02.

In part 3, the participants were asked to list the activities in which surgery was helpful. Most mentioned activities were: holding the cutlery, picking up objects, writing, using the computer and using the wheelchair. Participants were also asked to give general comments. Most participants reacted positively and mentioned the activities in which the surgery had helped. Seven participants gave negative comments including: lack of monitoring after the surgery, deterioration in independence or no improvement, increase of paresis after surgery and stagnation of the rehabilitation process due to the waiting period before the surgery. None of the participants reported postsurgical complications. Suggestions to improve the surgery and rehabilitation process were given by three participants. They were: evaluation of the results after surgery, starting surgery on the arm with the worse function and perform surgery on one hand only.

Discussion

The purpose of this study was to evaluate the level of satisfaction after upper extremity surgery in persons with tetraplegia in the Netherlands and to obtain positive and/or negative comments on the surgical and rehabilitation process regarding upper extremity surgery. It was found that 73.5% of the participants were satisfied with the results of surgery and 65–77% of the participants would choose to undergo surgery again. An important finding of this study is the significant positive correlation between the willingness to have surgery again and improvement in activities and occupation. Dissatisfaction was mainly due to absence or lack of improvement post surgery. It appears to be essential to evaluate outcomes of the surgeries on the level of activities and/or participation. The results obtained in this study are considered to be relevant because the group participated in this study is a significant part of persons with tetraplegia who underwent upper extremity surgery in the Netherlands. Furthermore, the response rate is high.

The only previous study with primary aim to evaluate patient satisfaction was carried out by Stroh Wuolle et al.16 They sent a questionnaire to 67 persons with CSCI in the United States (107 arms) to evaluate satisfaction after upper extremity surgery in detail. Approximately 70% among their study population were satisfied; 77% reported positive life impact, 66–68% reported improvement in ADL and independence and 69% reported improvement in occupation. Results of this study are similar except regarding the occupation. Only 35% of the participants from our population were positive about questions related to occupation and school. As the questionnaire used in both studies is the same, the results are comparable.

Results of the current study showed that 35% of the persons who underwent elbow extension surgery and 23% of the persons who underwent hand/wrist surgery would not choose to have surgery again. These persons did answer negatively to questions about activity and occupation. We can only presume why they do not want to have surgery again. A possible explanation could be that the information given to them before the surgery was not precise, resulting in higher expectations. Forner-Cordero et al.11 found in their study that 57.2% of the persons expected better results of the surgery. Another possibility could be that there was really no improvement after surgery. This could be due to insufficient strength of the muscle used for transfer that had borderline strength before surgery.

Former studies have already identified treatment characteristics contributing to the decision to undergo upper extremity surgery. The duration of in-patient rehabilitation, type of intervention, number of operations, duration of immobilization and the risk of complications were, to the patients, either equally or more important considerations as functional outcome for decision-making. Outpatient treatment was considered to be relatively unimportant by the patients if it lasted up to 12 weeks.5 Anderson et al.6 stated that 80% of their population would be willing to spend 2–3 months being less independent during recovery from surgery in order to become more independent afterward. Roach et al.19 found in their study that Dutch persons with tetraplegia would trade less time than those from the United States for return to normal arm–hand function. Contrary to that, none of the participants in the present study made a negative comment about the number of operations or the duration of the rehabilitation process.

This study has some limitations. First, the questionnaire was not standardized, therefore generalization of the results is limited. Second, and maybe more important, because this survey had to be anonymous, as a consequence, it is not possible to find out to what extent treatment and patient characteristics have a role in satisfaction and the decision to have reconstructive surgery again. Further research is needed to clarify this relation. However, an advantage of this anonymous questionnaire might be that there is no positive answer bias. Participants were free to give negative comments.

Conclusion

In the Dutch study population, the majority of the persons with tetraplegia who underwent reconstructive upper extremity surgery were satisfied with the results. Few patients gave negative comments. Generally, satisfied participants were able to perform more activities (like ADL) and they were more independent.