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Clinical Utility of Patient-Reported Outcome Measures Used for Tendon and Nerve Transfers for Tetraplegia in New Zealand

Open AccessPublished:November 16, 2022DOI:https://doi.org/10.1016/j.jhsg.2022.10.005

      Purpose

      This study determines the clinical utility of patient-reported outcome measures used to measure outcomes of upper extremity (UE) reconstructive procedures in individuals with tetraplegia. The patient-reported outcome measures are the Canadian Occupational Performance Measure, the Capabilities of Upper Extremity Questionnaire (CUE-Q), and the Personal Wellbeing Index.

      Methods

      Retrospective data of 43 individuals with spinal cord injury (SCI) levels C4-C7 tetraplegia, and American Spinal Injury Association Impairment Scale grades A-D who had upper limb reconstructive surgery were reviewed. Participants were grouped according to their SCI level and resultant surgical procedures into higher SCI severity and lower SCI severity groups.

      Results

      The mean age of participants was 26.3 years (SD 13.4; range 13–64 years). The higher-severity SCI group required elbow and hand reconstruction surgery, whereas the lower-severity group only required hand reconstruction surgery. Important differences in Canadian Occupational Performance Measure priorities were identified between the higher and lower SCI severity groups. Question redundancy was evident with the CUE-Q. The self-report Personal Wellbeing Index captures the possible impacts of improved UE function on an individual’s perceived sense of personal wellbeing.

      Conclusions

      In this patient-reported outcome measure analysis, we found that the level of impairment influences patient priorities. Functional measures ought to consider UE impairment and personal wellbeing as a construct in this population, given the demands of surgery.

      Type of Study/Level of Evidence

      Prognostic II

      Key words

      Measuring the outcomes following upper extremity (UE) reconstructive surgery for tetraplegia is increasingly important considering the advent of nerve transfer (NT) procedures that are now offered at a much earlier stage following spinal cord injury (SCI) to augment traditional tendon transfer (TT) procedures.
      • Fox I.K.
      Nerve transfers in tetraplegia.
      For TT surgery, proposals dating back as far as 2007 have included recommendations for the collective use of the Canadian Occupational Performance Measure (COPM) in all upper limb surgery centers worldwide to capture and document individuals’ self-identification of problems.
      • Law M.
      • Baptiste S.
      • McColl M.A.
      • Opzoomer A.
      • Polatajko H.
      • Pollock N.
      The Canadian Occupational Performance Measure: an outcome measure for Occupational Therapy.
      In keeping with self-identification, 2 patient-reported outcome measures (PROMs), the Capabilities of Upper Extremity Questionnaire (CUE-Q) and the Personal Wellbeing Index (PWI), were added to the battery of measures within the International Upper Limb Surgery registry.
      • Marino R.J.
      • Shea J.A.
      • Stineman M.G.
      The capabilities of upper extremity instrument: reliability and validity of a measure of functional limitation in tetraplegia.
      • Cummins R.
      Personal Wellbeing Index.
      • Sinnott K.A.
      • Dunn J.A.
      • Rothwell A.G.
      • Hall A.S.
      • Post M.W.
      The development of the NZ upper limb surgery registry for tetraplegia.
      Although the CUE-Q was designed to measure functional limitation of the UE in individuals with tetraplegia, it had previously been recommended as being useful in the upper extremity (UE) reconstructive surgery population.
      • Bryden A.
      • Sinnott A.
      • Mulcahey M.J.
      Innovative strategies for improving upper extremity function in persons with tetraplegia and considerations in measuring functional outcomes.
      ,
      • Mulcahey M.J.
      • Hutchinson D.
      • Kozin S.
      Assessment of upper limb in tetraplegia: considerations in evaluation and outcomes research.
      However, robust studies that report the use of the CUE-Q in this population are lacking. The PWI was validated for SCI.
      • Geyh S.
      • Fellinghauer B.A.
      • Kirchberger I.
      • Post M.W.
      Cross-cultural validity of four quality of life scales in persons with spinal cord injury.
      However, we are not aware of any studies that report changes in individuals’ perception of their personal wellbeing, specific to UE reconstructive surgery.
      We aimed to explore the clinical utility of these PROMs because self-report measures are time-consuming and demanding, so it is important to understand their clinical usefulness. Clinical utility is a term used to “describe the relevance and usefulness of an intervention in patient care.”
      • Lesko L.J.
      • Zineh I.
      • Huang S.M.
      What is clinical utility and why should we care?.
      Although extensive research demonstrates good clinical utility for the COPM in this population, the clinical utility of the CUE-Q and PWI has yet to be established.
      • Wangdell J.
      • Friden J.
      Performance of prioritized activities is not correlated with functional factors after grip strength reconstruction in tetraplegia.
      • Wangdell J.
      • Friden J.
      Activity gains after reconstruction of elbow extension in patients with tetraplegia.
      • Wangdell J.
      • Fridén J.
      Satisfaction and performance in patient selected goals after grip reconstruction in tetraplegia.
      • Wangdell J.
      • Carlsson G.
      • Fridén J.
      Enhanced independence: experiences after regaining grip function in people with tetraplegia.
      • Wangdell J.
      • Carlsson G.
      • Friden J.
      From regained function to daily use: experiences of surgical reconstruction of grip in people with tetraplegia Orthop Rheumatol.
      We postulated that the clinical utility of all 3 PROMs differs according to the suite of surgical interventions offered and the likelihood of achievable functional improvements with the activities of daily living.
      There are many contributors to clinical utility, including analytic validity, clinical validity, test setting and purpose, societal legitimacy, efficacy and effectiveness, the balance of outcomes, patient and family acceptability, economic measures, and equity.
      • Burke W.
      • Laberge A.M.
      • Press N.
      Debating clinical utility.
      For this study, we reviewed the clinical validity and explored further the test setting, purpose, and effectiveness. Clinical validity determines the potential clinical uses of the measures, whereas test setting and purpose determine the outcomes sought from the testing. Notably, effectiveness determines the potential for the test to describe the health outcomes sought.
      • Burke W.
      • Laberge A.M.
      • Press N.
      Debating clinical utility.
      The aims of this paper are to review outcomes data from the 3 PROMs used to report changes over time for individuals with tetraplegia in New Zealand. The primary outcome was to determine whether the COPM, CUE-Q, and PWI demonstrated clinically meaningful changes in scores after UE surgery. This study is part of a larger series where we hypothesized that the functional priorities, activities of daily living, and contextual factors are not measured adequately by the current clinician-directed PROMs.
      • Sinnott Jerram K.A.
      • Dunn J.A.
      • Smaill R.P.
      • Middleton J.W.
      Using mixed methods to better appreciate the life impact of upper limb reconstruction surgeries for tetraplegia in New Zealand.
      ,
      • Sinnott Jerram K.
      • et al.
      ICF word mapping to determine the human functioning associated with arm/hand surgery for tetraplegia.

      Materials and Methods

      Inclusion criteria for the international registry were: (i) a cervical SCI between C4–C7 levels and American Spinal Injury Association Impairment Scale (AIS) grades A, B, C, or D, (ii) assessed clinically as suitable for surgical reconstruction requiring TT on one or both arms, (iii) 16 years or older at time of the first surgery. Inclusion criteria for this study were: i) TT surgery performed to restore elbow extension and/or pinch grip and/or grasp at least 6 months previously (+/− a single NT procedure); and ii) completion of both preoperative and postoperative clinical outcome measures. The exclusion criteria for this study were: i) revision surgery, ii) NT for finger extension only, and iii) tendon lengthening procedures without any TT reconstruction. The surgery cohort was divided by their clinically determined SCI severity into 2 main groups: 1) lower-severity SCI group (who required pinch and/or grip reconstruction only) and 2) higher-severity SCI group (who required elbow extension and pinch and or/grip reconstruction +/ NT). It is routine clinical practice at the Burwood Spinal Unit for bilateral and simultaneous surgery, where first elbow reconstruction and then pinch and/or grip reconstruction are performed. Thus, the analysis of the CUE-Q was ordered first by elbow reconstruction procedures and then the pinch and/or grip reconstructions. Elbow reconstructions used posterior deltoid to triceps TT , and hand reconstructions comprised forearm TT for pinch and/or grasp. The split distal flexor pollicis longus tenodesis was used as an alternative to thumb interphalangeal joint arthrodesis to prevent excessive flexion of the thumb during key pinch.
      • Mohammed K.D.
      • Rothwell A.G.
      • Sinclair S.W.
      • Willems S.M.
      • Bean A.R.
      Upper limb surgery in tetraplegia.
      All NT procedures were the nerve to supinator being transferred to the posterior interosseous nerve (SPIN) and were performed at least 6 months prior to any TT procedures.
      Sociodemographic and clinical details and reconstruction type are reported using descriptive statistics. The information included date of birth, date and cause of SCI, ethnicity, geographic location, surgical procedures and complications, impairment categorization using International Standards of Neurological Classification of Spinal Cord Injury (ISNCSCI) and International Classification for Surgery of the Hand in Tetraplegia.
      • Kirshblum S.C.
      • Burns S.P.
      • Biering-Sorensen F.
      • et al.
      International standards for neurological classification of spinal cord injury (Revised 2011).
      ,
      • McDowell C.L.
      • Moberg E.A.
      • House J.H.
      The Second International Conference on Surgical Rehabilitation of the Upper Limb in Tetraplegia (Quadriplegia).
      The COPM, CUE-Q, and PWI were completed prior to each TT procedure. The COPM, CUE-Q, and PWI were completed between 6 and 12 months following surgery. The COPM is an instrument that uses interviews to enable individuals to identify, prioritize, and score their satisfaction and performance of self-selected activities over time. Individuals then prioritize the 5 most important activity limitations they identified during the interview and rate their current level of performance and satisfaction. Performance and satisfaction are scored separately on a 1–10 scale, where 10 indicates very good performance and high satisfaction.
      • Law M.
      • Baptiste S.
      • McColl M.A.
      • Opzoomer A.
      • Polatajko H.
      • Pollock N.
      The Canadian Occupational Performance Measure: an outcome measure for Occupational Therapy.
      When looking at clinically meaningful changes to the COPM, the summed score of performance and satisfaction are each divided by the number of problems identified (in this case, 5 for each individual) to provide an average score for each identified problem. A change of more than 2 points in the average COPM score has been identified as clinically meaningful.
      • McColl M.A.
      • Paterson M.
      • Davies D.
      • Doubt L.
      • Law M.
      Validity and community utility of the Canadian Occupational Performance Measure.
      The CUE-Q is a 17-item questionnaire (15 items assessed separately for right and left sides, and 2 bimanual activities) in which individuals rate their ability to perform functional tasks with their upper limbs on a 5-point scale (0 = unable/complete difficulty, 1 = severe difficulty, 2 = moderate difficulty, 3 = mild difficulty, and 4 = no difficulty).
      • Marino R.J.
      • Shea J.A.
      • Stineman M.G.
      The capabilities of upper extremity instrument: reliability and validity of a measure of functional limitation in tetraplegia.
      Scores of the CUE-Q range between 0 and 128; the higher the score, the less difficulty the individual has performing the activity. The PWI consists of 8 items gauging satisfaction with specific life domains (living, standard, health, achievement, relationships, safety, community, religion/spirituality, and future security) and one optional question about overall life satisfaction. Responses are provided on a 0–10 rating scale. The lower the rating, the less the satisfaction.
      • Lau A.L.
      • Cummins R.A.
      • McPherson W.
      An investigation into the cross-cultural equivalence of the Personal Wellbeing Index..
      The psychometric properties of these 3 measures are provided in Appendix 1 (available on the Journal’s website at www.jhsgo.org).
      For the COPM, CUE-Q, and PWI, summed score changes from preoperative to postoperative (6–12 months) assessment were determined for the full cohort first and then for the lower and higher SCI severity groups. Changes from preoperative to postoperative assessment were determined for single-item scores for the CUE-Q and PWI. Using SPSS24, the data met the criteria for the use of the Wilcoxon test, which is recommended to test for differences between groups when the dependent variable being measured is ordinal.
      • Derrick B.
      • White P.
      Comparing two samples from an individual Likert question.
      For the single-item analyses, two-way ranked analysis is reported with median score change provided to determine frequencies of score changes for the full surgery group and then the 2 SCI severity groups. In all cases, the median scores and interquartile ranges are reported. Again, this was calculated for the full surgery group with completed preoperative and postoperative scores and then for the higher and lower SCI severity groups for each measure. Additionally, the higher SCI severity group was analyzed separately in relation to the CUE-Q score changes for the questions specific to elbow function. This was repeated for the lower SCI severity group. This distinction was repeated for the COPM for performance and satisfaction and the PWI. In addition, the CUE-Q single-item score change over time was calculated for preoperative and postoperative for the full sample (n = 43). The threshold for significance was set at P < .05. Frequency analysis provided median score changes that give a better idea of which results are clinically meaningful. The minimal clinically meaningful difference for the PWI is that a 1-point median score difference is detectable.
      • Mulcahey M.J.
      • Hutchinson D.
      • Kozin S.
      Assessment of upper limb in tetraplegia: considerations in evaluation and outcomes research.
      ,
      • Research Optimus
      What is Frequency Analysis? History and Definition of Frequency Analysis. Research Optimus.
      Ethical approval for this study phase was obtained from the Canterbury District Health Board Ethics Committee (RO 14063-A1). Informed consent was sought at the time of clinical assessment as per the ethics committee approval from the New Zealand Health and Disability Ethics Committee for the development of the International Upper Limb Surgery registry (URA/11/EXP/026).

      Results

      Of the 99 individuals clinically assessed as suitable for UE surgery between 2010 and 2019, 62 had surgery, and 33 declined the offer. Forty-three (69%) individuals met the inclusion criteria for this cohort study, whereas 19 (30.6%) exclusions included revision surgery, NT for finger extension only, or tendon lengthening procedures without any TT reconstruction. Of the 43 individuals who had surgery and met the inclusion criteria, 39 had completed all PROMs with preoperative and postoperative scores. The dataset for 4 individuals was incomplete, but they were included in the analysis where possible. Sociodemographic details and injury-related characteristics for the 2 SCI severity groups are shown in Table 1. Group 1 was the lower SCI severity (n = 23), comprising only hand reconstructions, and group 2 was the higher SCI severity (n = 20). In group 1, 2 individuals had unilateral procedures only but were included in the analysis. In group 2, all individuals had received elbow reconstruction, 40% had key pinch reconstruction, and 30% had grasp reconstruction. As stated previously, it is routine clinical practice for the individual to receive elbow reconstruction surgery first and then subsequent surgery for reconstruction of pinch and or grasp reconstruction. One individual had staged procedures, and one had unilateral procedures only. Nine individuals in group 2 also had a single NT procedure (SPIN), and no individuals in group 1 had NT procedures. All elbow reconstruction procedures were posterior deltoid–triceps TT. Key pinch reconstructions were either brachioradialis or extensor carpi radialis longus to flexor pollicus longus TT, and grip reconstructions were either brachioradialis, extensor carpi radialis longus, or pronator teres to flexor digitorum profundus TT.
      Table 1Demographics and SCI Characteristics
      Group 1: Lower SCI severityGroup 2: Higher SCI Severitychi-square

      P < .05
      Number of people (arms)23 (44 arms)20 (40 arms).07
      Mean age at injury years, (SD) range29.8 (14.6) 16–6422.8 (14) 13ˆ–56.38
      <3016 (69.6%)16 (69.6%)
      31–452 (8.7%)3 (15%)
      46–655 (21.7%)1 (5%)
      Women:Men4:197:13.59
      Men %82.6%65%
      Time from injury to surgery years, (SD) range10.3 (2.24) 1.2-34.110.9 (1.4) 0.3-16.6.001∗
      <6 months04 (20%)
      6–12 months04 (20%)
      1–2 years5 (21.7%)5 (25%)
      2–5 years4 (17.4%)4 (20%)
      5–10 years3 (13.0%)1 (5%)
      >10 years11 (47.8%)2 (10%)
      Ethnicity.59
       NZ European17 (73.9%)13 (65%)
       Māori4 (17.4%)3 (15%)
       Pacific01 (5%)
       Other2 (8.7%)3 (15%)
      Cause of Injury.26
       Sports14 (60.9%)7 (35%)
       Transportation6 (26.1%)10 (50%)
       Fall3 (13%)3 (15%)
       Other traumatic event00
      ISNCSCI level.008∗
       C403 (15%)
       C55 (21.7%)10 (50%)
       C67 (30.4%)6 (30%)
       C711 (47.8%)1 (5%)
      AIS severity score.67
       A14 (60.9%)13 (65%)
       B7 (30.4%)4 (25%)
       C1 (4.3%)3 (15%)
       D1 (4.3%)0
      Reconstructions (limbs)
      NT - SPIN018 (90%)<.001∗
      Key pinch44 (95.6%)16 (40%)<.001∗
      Grasp42 (95.2%)12 (30%)<.001∗
      Elbow040 (100%)<.001∗
      Other joint fusions20 (43.5%)14 (35%).96
      Surgeries
      Bilateral simultaneous21 (91.3%)18 (90%)
      Bilateral staged01 (5%)
      Unilateral2 (8.7%)1 (5%)
      ICSHTR/LR/LR.47
      O01/10/1L.80
      O1/OCu16/88/8
      OCu22/13/1
      OCu34/34/5
      OCu47/42/1
      OCu51/33/5
      OCu61/00/0
      OCu71/10/0
      X0/10/0
      not classified1/11/
      ISNCSCI - International Standards for Neurological Classification of SCI; ICSHT International Classification for Surgery of the Hand in Tetraplegia

      Canadian Occupational Performance Measure

      The COPM goals for the 2 SCI severity groups were analyzed according to the category in which they corresponded (ie, self-care, productivity, or leisure) and the individual’s ranking of importance of the goal (Table 2). Individuals in the lower-severity SCI group identified and prioritized more goals in the self-care category. In contrast, individuals in the higher-severity SCI group were more likely to rank productivity goals higher.
      Table 2Differences in COPM Based on SCI Severity
      Prioritized problem identification per COPM categoryLower SCI Severity Group (N = 23)Higher SCI Severity Group (N = 20)chi-square

      P < .05
      Problem 1<.001∗
      Self-care23 (100%)11 (55%)
      Productivity09 (45%)
      Leisure00
      Problem 2<.001∗
      Self-care22% (95.7%)9 (45%)
      Productivity1 (4.3%)11 (55%)
      Leisure00
      Problem 3.009∗
      Self-care16 (69.6%)7 (35%)
      Productivity7 (30.4%)7 (35%)
      Leisure06 (30%)
      Problem 4<.001∗
      Self-care16 (69.6%)3 15%)
      Productivity6 (26.1%)6 (30%)
      Leisure1 (4.3%)11 (55%)
      Problem 5<.001∗
      Self-care16 (69.6%)1 (5%)
      Productivity6 (26.1%)8 (40%)
      Leisure1 (4.3%)11 (55%)

      Preoperative and postoperative scores for all 3 PROMs

      The preoperative and postoperative results for all 3 PROMs are displayed in Table 3. We reported the results of each of the PROMs for the full cohort as well as the lower- and higher-severity SCI groups.
      Table 3Preoperative and Postoperative Scores for All Measures
      Group/MeasurePreoperativePostoperativeP value
      Full Cohort – All surgery participants
      COPM (n = 215 goals)<.001
      P < .05 Nonparametric Wilcoxon Test.
      Median summed score (IQR) COPM performance10 (7–14)27 (11–36)
      Median averaged score COPM performance2 (1.4–2.8)5.4 (2.2–7.2)<.001
      P < .05 Nonparametric Wilcoxon Test.
      Median summed score (IQR) COPM satisfaction9 (7–21)29 (23–40)
      Median averaged score COPM satisfaction1.8 (1.4–4.2)5.8 (4.6–8)
      CUE-Q (n = 43)62 (45–76)76 (65–86).008
      P < .05 Nonparametric Wilcoxon Test.
      Median (IQR) summed score
      PWI (n = 43).07
      Part 1 Q1- Life as a whole7 (4–8)7 (6–8)
      Part 2.23
      Q1 Living standard8 (6–8)8 (7–9).006
      P < .05 Nonparametric Wilcoxon Test.
      Q2 Health7 (6–8)8 (7–9).5
      Q3 Life achievement6 (5–7)6 (5–7).38
      Q4 Relationships6 (5–7)6 (5–7).37
      Q5 Safety7 (6–8)7 (6–8).002
      P < .05 Nonparametric Wilcoxon Test.
      Q6 Community feeling7 (5–8)8 (7–9)<.001
      P < .05 Nonparametric Wilcoxon Test.
      Q7 Future security6 (5–8)8 (7–8).86
      Q8 Spirituality8 (7–10)8 (5–10)
      Part 2 Summed Score
      Median (IQR).001
      P < .05 Nonparametric Wilcoxon Test.
      Summed score57 (43–62)60 (53–67)>5%
      PWI % preoperativepost score change
      Group 1: Lower SCI severity (hand reconstruction only)
      COPM (n = 110 goals)
      Median summed score (IQR) performance10 (6–14)29 (25–36)<.001
      P < .05 Nonparametric Wilcoxon Test.
      Median summed score (IQR) satisfaction2 (1.2–2.8)5.8 (5–7.2)<.001
      P < .05 Nonparametric Wilcoxon Test.
      Median averaged score performance9 (7–13)30 (25–40)
      Median summed score satisfaction1.8(1.4–2.6)6 (5–8)
      CUE-Q (n = 21)
      Median (IQR) summed score57 (45–76)76 (64–88).001
      P < .05 Nonparametric Wilcoxon Test.
      Q1- 9 Median (IQR) summed score24 (14–31)28 (24–32).012
      P < .05 Nonparametric Wilcoxon Test.
      Q10-17 Median (IQR) summed score11 (8–14)17 (11–19).008
      P < .05 Nonparametric Wilcoxon Test.
      PWI (n = 21)
      Median (IQR)55 (47–61)60 (51–67).013
      P < .05 Nonparametric Wilcoxon Test.
      Summed Scores12611367
      PWI % preoperativepost score change7.8%
      Group 2: Higher SCI severity (elbow and hand reconstruction)
      COPM (n = 100 goals)
      Median summed score (IQR) performance10 (5–20)13 (7–46)
      Median summed score (IQR) satisfaction2 (1.2–2.8)5.4 (2.2–7.2).006
      P < .05 Nonparametric Wilcoxon Test.
      CUE-Q (n = 20).006
      P < .05 Nonparametric Wilcoxon Test.
      Median (IQR) summed score1.8 (1.4–2.6)5.8 (4.6–8)<.001
      P < .05 Nonparametric Wilcoxon Test.
      Q1- 9 Median (IQR) summed score11 (8–14)17 (11–19).01
      P < .05 Nonparametric Wilcoxon Test.
      Q10-17 Median (IQR) summed score10 (8–14)14 (11–20).01
      P < .05 Nonparametric Wilcoxon Test.
      PWI (n = 20)
      Median (IQR)50 (40–61)60 (53–66.2).046
      P < .05 Nonparametric Wilcoxon Test.
      Summed Scores17881930
      PWI % preoperativepost score change7.4%
      IQR, interquartile ranges
      P < .05 Nonparametric Wilcoxon Test.

      Canadian Occupational Performance Measure

      The summed scores are reported for performance and satisfaction. Score changes for COPM satisfaction reached significance for all groups on the Wilcoxon signed-rank test. However, for COPM performance, the higher-severity SCI group did not report a significant improvement (P = .12). Clinically meaningful changes (change in more than 2 points in the average score) were seen for performance and satisfaction for the whole cohort and the higher and lower SCI severity groups.

      Capabilities of UE Questionnaire

      The summed CUE-Q scores for each group showed a significant change before and after surgery. Given the lack of psychometric testing for the CUE-Q, we are unable to determine if this is a clinically meaningful change. When the CUE-Q questions were considered in relation to function following surgery, Questions 1–9 directly related to the ability to reach or lift (Q1–4) and pull and push (Q5–9). Therefore, it was hypothesized that these questions should show changes in scores following elbow reconstruction surgery in the higher-severity SCI group. Similarly, it was hypothesized that there should be no changes in question responses for those who only received hand reconstruction surgery (ie, the lower-severity group). Questions 10–17 relate to moving and positioning your arm and wrist (Q10,11) and using your hands and fingers (Q12–17). Thus, it was hypothesized that there should be changes in these questions’ responses following hand reconstruction surgery but not elbow reconstruction surgery. Table 4 displays the change over time in CUE-Q single-item scores calculated for preoperative and postoperative for the full cohort (n = 43). For Q1–9 (relating to elbow reconstruction surgery), only 4 out of the 9 questions showed a significant change between pre and postoperative. These were Q2 (raising the arm above the head), Q3 (reaching down to touch the floor and sitting back up), Q7 (pushing a can of soda away from you), Q8 (pushing a heavy object away from you), and Q9 (pushing down with both arms to lift buttocks out of seat). Of the questions that did not show a change in score, 3 questions (Q2 reach out in front of you; Q5 pull light object; Q7 push light object) all showed that the maximum response had been attained prior to surgery, and, therefore, no further change in score was available.
      Table 4Full Cohort CUE-Q Single-Item Score Changes preoperative to 6–12 months post-Surgery
      N = 43Preoperative

      Median (IQR)
      Postoperative Median (IQR)
      P < .05 Nonparametric Wilcoxon Test
      P value
      Median Likert score changeClinically detectable score change
      REACH AND LIFT
      Q1 R4 (3–4)4 (4–4).09n/an/a
      Q1 L4 (2–4)4 (4–4).01
      P < .05 Nonparametric Wilcoxon Test
      0no
      Q2 R2 (0–4)4 (3–4)<.001
      P < .05 Nonparametric Wilcoxon Test
      2yes
      Q2 L3 (0–4)4 (4–4)<.001
      P < .05 Nonparametric Wilcoxon Test
      1yes
      Q3 R0 (0–2)0 (0–3).016
      P < .05 Nonparametric Wilcoxon Test
      0no
      Q3 L0 (0–2)0 (0–3).037
      P < .05 Nonparametric Wilcoxon Test
      0no
      Q43 (1–4)4 (2–4).071n/an/a
      PULL/PUSH
      Q5 R4 (4–4)4 (4–4).21n/an/a
      Q5 L4 (4–4)4 (4–4).12n/an/a
      Q6 R4 (4–4)4 (4–4).38n/an/a
      Q6 L4 (4–4)4 (4–4).19n/an/a
      Q7 R4 (3–4)4 (4–4).001
      P < .05 Nonparametric Wilcoxon Test
      0no
      Q7 L4 (2–4)4 (4–4)<.001
      P < .05 Nonparametric Wilcoxon Test
      0no
      Q8 R3 (1–4)4 (3–4).01
      P < .05 Nonparametric Wilcoxon Test
      1yes
      Q8 L3 (1–4)4 (2–4).003
      P < .05 Nonparametric Wilcoxon Test
      1yes
      Q90 (0–4)1 (0–4).03
      P < .05 Nonparametric Wilcoxon Test
      1yes
      MOVING/POSITIONING
      Q10 R4 (3–4)4 (3–4).49n/an/a
      Q10 L4 (3–4)4 (3–4).75n/an/a
      Q11 R4 (3–4)4 (3–4).16n/an/a
      Q11 L4 (3–4)4 (3–4).28n/an/a
      USING FINGERS/HANDS
      Q12 R0 (0–1)0 (0–3).04
      P < .05 Nonparametric Wilcoxon Test
      0no
      Q12 L0 (0–1)0 (0–2).120no
      Q13 R0 (0–2)1 (0–2).01
      P < .05 Nonparametric Wilcoxon Test
      1yes
      Q13 L0 (0–2)1 (0–2).03
      P < .05 Nonparametric Wilcoxon Test
      1yes
      Q14 R1 (0–2)1 (0–3).04
      P < .05 Nonparametric Wilcoxon Test
      1yes
      Q14 L1 (0–2)1 (0–2).09n/an/a
      Q15 R0 (0–0)1 (1–3)<.001
      P < .05 Nonparametric Wilcoxon Test
      1yes
      Q15 L0 (0–1)0 (0–2).01
      P < .05 Nonparametric Wilcoxon Test
      0no
      Q16 R0 (0–0)0 (0–0).22n/an/a
      Q16 L0 (0–0)0 (0–1).04
      P < .05 Nonparametric Wilcoxon Test
      0no
      Q17 R0 (0–0)0 (0–0).85n/an/a
      Q17 L0 (0–0)0 (0–0).14n/an/a
      P < .05 Nonparametric Wilcoxon Test
      Similarly, one question (Q3 reach down to the floor); indicated that this task was too difficult/impossible to perform prior to surgery, and there was no change after surgery. Thus, for those who had elbow reconstruction surgery there appeared to be a number of tasks that were able to be performed prior to surgery and some that were impossible to perform either before or after surgery, suggesting redundancy in the questions for this group. In addition, for those who only had pinch and grip reconstruction, there was no change in score in any of these questions, again suggesting question redundancy.
      For questions, 10–17 (relating to grip/pinch reconstruction surgery), only one question Q13 (picking up a small object with the tips of the thumb and the first 2 fingers) out of the 8 questions that would be expected to show changes showed a significant change. Again, there were 2 questions that participants had scored the maximum value prior to surgery (Q10 wrist up; Q11 palm down), so no further changes could occur. There were also 3 questions (Q12 grasp a hammer; Q16 manipulate a coin; Q17 push with a finger) that scored extremely difficult/impossible before and after surgery. While there was not a significant change in score for the remaining 2 questions, Q14 key pinch and Q15 wide grasp, changes in responses were seen. This could be because not all individuals had both their key pinch and grasp reconstructed, and, as such, there would be no change in score for Q15 (wide grasp) for those who only had pinch reconstructed and vice versa. Median score changes of further frequency analysis
      • Research Optimus
      What is Frequency Analysis? History and Definition of Frequency Analysis. Research Optimus.
      showed a clinically meaningful difference score change for 6 out of the 17 questions. These were (Q2 raising your arm above your head, Q8 pushing a heavy object away from you, Q9 pushing down with both arms to lift your buttocks off the seat, Q13 picking up an object with the tips of thumb and the first 2 fingers, Q14 pinching and holding an object between the thumb and the index finger, Q15 grasping large object with the tips of the fingers enough to pick it up). Overall, the analysis of the questions of the CUE-Q indicates that only 6 out of the 17 (35%) questions showed a clinically meaningful change in score after surgery. When broken down into the type of surgery, only 3 questions out of 9 (33%) related to elbow reconstruction surgery, and 3 questions out of 8 (38%) related to pinch/grip reconstruction.

      Personal Wellbeing Index

      In Part 1 of the PWI, the change in score for Q1 about satisfaction with life as a whole did not reach significance (P = .07). In Part 2 of the PWI, the scores for 3 questions changed significantly over time. These were: Q2 about satisfaction with health (P = .006), which showed a score change of 1, Q5 about satisfaction with feeling part of the community (P = .002), with a score change of 2, and Q6 about satisfaction with a feeling of future security (P = .000), with a score change of 2. The overall summed score for the Part 2 change reached statistical significance (P = .001), with a median score difference of 3.

      Discussion

      This study is part of a larger series exploring the functional priorities, activities of daily living, and contextual factors associated with UE surgery for individuals with tetraplegia.
      • Sinnott Jerram K.A.
      • Dunn J.A.
      • Smaill R.P.
      • Middleton J.W.
      Using mixed methods to better appreciate the life impact of upper limb reconstruction surgeries for tetraplegia in New Zealand.
      ,
      • Sinnott Jerram K.
      • et al.
      ICF word mapping to determine the human functioning associated with arm/hand surgery for tetraplegia.
      The primary outcome of this study phase was to determine whether the COPM, CUE-Q, and PWI demonstrate clinically meaningful score changes following UE surgery. In the first instance, our findings reinforce the recommendation that the COPM is appropriate for this population. The individual’s priorities and goals are satisfactorily met by UE reconstructive surgery. However, by dividing our cohort into 2 groups according to SCI severity, we raise the possibility that differences in priorities need to be considered in relation to impairment. While the analysis of the CUE-Q scores showed significant changes between the preoperative and postoperative scores for the full surgery group when each question was analyzed separately, only 6 of 17 questions showed a clinically meaningful change for one or the other hand. These were: Q2 raising the arm above the head, Q8 pushing a heavy object away, Q9 pushing down with both arms to lift the buttocks out of a seat, Q13 picking up a small object between the tips of the thumb and the first 2 fingers, Q14 pinching and holding an object between the thumb and the side of the index finger; and Q15 grasping a large object with the tips of the fingers enough to pick it up. This suggests substantial redundancy in the questions of the CUE-Q for this population, as some tasks may be impossible for an individual with tetraplegia to perform. In terms of the clinical utility of the CUE-Q in this population, we wanted to determine whether the tasks were relevant for UE surgery for tetraplegia. To do this, we looked at what questions in the CUE-Q showed clinically meaningful change after surgery. We found that for people who had elbow reconstruction surgery, only 3 of the 9 questions about shoulder/upper arm function showed a change.
      Additionally, for those who had hand reconstruction, only 3 of the 8 questions about the wrist, finger, and thumb function showed a change. Some questions in both sections show ceiling and floor effects (ie, could already be performed prior to surgery or were extremely difficult to perform even after surgery). Thus, the identified redundancy of over 50% of questions in the tool challenges the clinical validity, efficacy, and effectiveness of this measure. If we use a tool to measure the outcome of surgery, we expect the majority of tasks tested to be capable of demonstrating change.
      When looking at the clinical utility of the PWI, and in the absence of a quality-of-life measure for this population, the results provide the impetus for ongoing use of the PWI. As with the CUE-Q, the PWI pre - post operative percentage score differed when the groups were divided by SCI severity. This is notable in terms of the demands of surgeries offered to the higher-severity group and the relatively lower percentage scores. Given that the higher-severity group included the NT procedures undertaken far earlier post-SCI, the psychosocial readiness for elective surgery demands closer scrutiny. Understanding wellbeing in this field forms the basis of this broader study series.
      • Sinnott Jerram K.A.
      • Dunn J.A.
      • Smaill R.P.
      • Middleton J.W.
      Using mixed methods to better appreciate the life impact of upper limb reconstruction surgeries for tetraplegia in New Zealand.
      Regarding the specific PROMs, there appear to be important differences in COPM-identified priorities for individuals with different levels of SCI severity. There is a specific concern in terms of question redundancy raised for the CUE-Q. It is clear from this analysis that alternative measures should be explored. Finally, the self-report PWI captures possible impacts of improved UE function on perceived personal wellbeing. All phases of this research received ethical approval from the Canterbury District Health Board Human Ethics Committee. Although not required by either of the ethics committees, consultation in terms of the ‘lived experience’ of SCI was undertaken by the Burwood Academy Consultation committee. This thesis project was funded by the University of Sydney Clinical Training scheme, the Burwood Upper Limb Surgery Governance group, and the New Zealand Spinal Trust.

      Acknowledgments

      Our heartfelt thanks are extended to the study participants from New Zealand. We are grateful to the travel funds contributed by the Upper Limb Surgery Endowment Fund, Burwood Hospital, Christchurch New Zealand.

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