Evaluation of a task-oriented client-centered upper extremity skilled performance training module in persons with tetraplegia

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1 (2011) 49, & 2011 Interntionl Society All rights reserved /11 $ ORIGINAL ARTICLE Evlution of tsk-oriented client-centered upper extremity skilled performnce trining module in persons with tetrplegi AIF Spooren 1,2,3,4, YJM Jnssen-Potten 1,2, E Kerckhofs 4, HMH Bongers 5 nd HAM Seelen 1,2 1 Adelnte Centre of Expertise in Rehbilittion nd Audiology, Hoensbroek, The Netherlnds; 2 CAPHRI, School for Public Helth nd Primry Cre, Deprtment of Rehbilittion Medicine, Mstricht University, Mstricht, The Netherlnds; 3 Helthcre Reserch, PHL University College, Hsselt, Belgium; 4 Deprtment of Rehbilittion Sciences nd Physicl Therpy, Vrije Universiteit Brussel, Brussels, Belgium nd 5 Adelnte Rehbilittion Centre, Hoensbroek, The Netherlnds Study design: Clinicl intervention study. Objective: Arm hnd skilled performnce (AHSP) hs mjor role in the rehbilittion of persons with cervicl spinl cord injury (C-SCI). A tsk-oriented client-centered upper extremity skilled performncetrining (ToCUEST) module ws developed. The present study ims to evlute effects of ToCUEST on specific nd generl AHSP in C-SCI, during nd fter rehbilittion. Setting: Adelnte Rehbilittion Centre (The Netherlnds). Methods: C-SCI persons, either during or fter rehbilittion, completed the ToCUEST trining; control group of ptients during rehbilittion received stndrd rehbilittion. The trining module ws focused on ptient s individul needs, combining principles of motor lerning nd trining physiology. Three self-selected gols were trined 3 dys per week, in three sessions of 30 min per dy for 8 weeks. Mesures were tken t 3 months fter the strt of the ctive rehbilittion (T0), before trining (T1), fter trining (T2), t follow-up (3 months post-trining; T3) nd t dischrge. Results: For both ToCUEST groups during (n ¼ 11) nd fter (n ¼ 12) rehbilittion, n improvement (Po0.001) on specific AHSP (using the Gol Attinment Scle nd the Cndin Occuptionl Performnce Mesure (stisfction nd performnce)) ws found between T1 T2 nd T1 T3. Also n improvement (Po0.02) in generl AHSP (using the Vn Lieshout Test, the QIF nd the motor FIM) ws found in the totl ToCUEST group between T1 T2 nd T1 T3. No significnt difference in improvement of generl AHSP ws found between the ToCUEST rehb nd control group. Conclusion: The ToCUEST module leds to improvement in AHSP, not only persons with C-SCI during rehbilittion, but lso fter finishing rehbilittion. These effects remin t follow-up. (2011) 49, ; doi: /sc ; published online 7 June 2011 Keywords: tetrplegi; tsk-oriented trining; client-centered; upper extremity; individul outcome mesures Introduction In persons with cervicl spinl cord injury (C-SCI), improving rm nd hnd performnce hs mjor role in rehbilittion nd my led to lrge improvement in self-mngement nd qulity of life. 1 Although there re limited number of studies, review on motor trining progrms for rm nd hnd functioning demonstrted the benefits of trining progrms nd the importnce of the specificity of the trining. A client-centered tretment might offer solution to the wide rnge of upper extremity ctivities nd the importnce of the specificity of the Correspondence: Dr AIF Spooren, Rehbilittion Sciences, Adelnte Centre of Expertise in Rehbilittion nd Audiology, Zndbergsweg 111, 6432 CC Hoensbroek, Limburg, The Netherlnds. E-mil:.spooren@delnte-zorggroep.nl Received 24 Februry 2011; revised 14 April 2011; ccepted 17 April 2011; published online 7 June 2011 trining. 2 On the bsis of () forementioned findings, (b) the lck of theoreticl frmework on client-centered cre nd the need to provide guidelines how to pply client-centered cre in dily prctice nd (c) the fct tht tetrplegic ptients encounter different needs throughout their lives, which my be delt with in seprte therpy modules fter ptients hve been dischrged, Spooren et l. 3 developed tsk-oriented client-centered upper extremity skilled performnce trining (ToCUEST) module for persons with tetrplegi. The ToCU- EST module, described by Spooren et l. 3 combines three elements, which hve been dvocted in rehbilittion, tht is, individul gol setting, client-centeredness nd tskoriented trining, into common frmework. 3 5 To dte, their combined use nd efficcy hve, to the uthors knowledge, not yet been reported in the SCI popultion. It is hypothesized tht the ToCUEST module, focusing on

2 1050 Evlution of ToCUEST in tetrplegi specific needs, leds to n improvement on specific skills. Furthermore, it is ssumed tht ToCUEST, reltive to therpy s usul, does not necessrily led to more improvement in generl rm hnd skilled performnce (AHSP). As to the ltter, it is expected tht similr results will be obtined. The im of the present study is to evlute the effects of ToCUEST on AHSP in tetrplegic ptients. First, the study ims to ssess whether ToCUEST leds to n improvement of specific skills not only in persons during their rehbilittion, but lso in persons who hve finished their rehbilittion. Second, it ims to ssess whether ToCUEST leds to generl improvement in AHSP during nd fter rehbilittion. Third, the present study ims to compre improvement in generl AHSP in both C-SCI persons receiving ToCUEST nd in C-SCI persons receiving stndrd trining. Methods Subjects Ptients with C-SCI (either motor complete or motor incomplete lesion), who were either ctively receiving rehbilittion (ctive-rehb group) or who hd finished their ctive rehbilittion (post-rehb group), were invited to prticipte in this clinicl intervention study. They were recruited from the SCI Unit of Adelnte Rehbilittion Centre. Inclusion criteri were: dignosed with C-SCI (including T1 lesion levels), ge between 18 nd 70 yers nd problems with AHSP (identified using the Cndin Occuptionl Performnce Mesure (COPM)). Exclusion criteri were: co-morbidity concerning neurologicl, orthopedic or rheumtologic diseses tht might strongly interfere with ADL functioning nd AHSP, nd inbility to tke prt in upper extremity mesurements. A control group of ptients during their rehbilittion were monitored prospectively during prospective cohort study, Physicl Strin, Work Cpcity nd Mechnisms of Restortion of Mobility in the Rehbilittion of SCI ( Dt of the ltter persons were cptured in lrge dtbse. The persons identified from this dtbse were selected, mtching every prticipting person by lesion completeness nd motor lesion level ccording to the Neurologicl Clssifiction of SCI, Upper Extremity Motor Score, 6 ge nd gender, respectively (pir-mtching). All subjects gve their informed consent. All pplicble institutionl nd governmentl regultions concerning the ethicl use of humn volunteers were followed during the course of this reserch. Intervention Ptients receiving ToCUEST chose two gols out of the five personlly most problemtic ctivities identified using the COPM. 7 Additionlly, they chose one ctivity from the Vn Lieshout test (VLT) items 8,9 to trin on. These three selfselected gols were trined 3 dys per week, in three sessions of 30 min per dy for 8 weeks. The trining progrm strted with tsk nlysis nd ws bsed on principles of trining physiology nd motor lerning. A detiled description of the ToCUEST module is given in n erlier pper by the uthors. 3 All prticipnts were trined by set tem of specilized occuptionl therpists nd physiotherpists. Persons in the ctive-rehb group received the specific trining insted of stndrd self-exercise progrm or hnd-function-group progrm. This wy, the totl rehbilittion lod for the prticipnts ws not chnged. For the post-rehb group, ny mintennce physiotherpy focusing on the upper extremity ws replced by the ToCUEST progrm. Ptients in the control group received therpy s usul, consisting of comprehensive pckge of cre ccording to lesion level nd lesion completeness. Mesurements Tests to mesure both specific nd generic AHSP (bsic nd complex ctivities) were used. Specific ctivities. GAS: Gol Attinment Scle is used to objectively mesure the effect of therpy on individul tretment gols nd hs shown to be fesible, relible, vlid nd responsive to chnge. 10,11 COPM: is used to mesure ptient s perception of performnce nd stisfction of the individul tsks on scle rnging from The relibility nd vlidity of the COPM hve been demonstrted in severl popultions nd tretment settings. 7 Generic AHSP. Vn Lieshout test ssesses the ctul performnce of rm hnd skills t the level of bsic ctivities. In the present study, the short form is used. In nlysis A, the sum score of both hnds ws tken, resulting in mximl ttinble score of 100 nd in nlysis B, the score of the best hnd ws used with mximl ttinble score of 50. The criterion vlidity, relibility, the internl consistency nd the responsiveness of the VLT Short Form were found to be good. 8,9 FIMmot: The motor score of the Functionl Independence Mesure ws used, consisting of 13 items with n ttinble mximl score of QIF: In the current study, the short-form Qudriplegi Index of Function with mximl totl score of 24 ws used. 13 Both FIM nd QIF hve dequte psychometric properties. 8,9,12,13 Mesurement moments were defined reltive to specific moments of the rehbilittion. Mesures of both specific nd generic ctivities were tken t T1 (the strt of specific trining progrm (for the rehb group, this ws t 5 months fter the strt of the ctive rehbilittion, in which the ltter ws defined s the moment tht ptients were ble to sit for three consecutive hours)), t T2 (the end of the specific trining progrm) nd t T3 (3 months fter finishing the trining). To compre the dt with the control group, generl AHSP outcome mesures were lso tken t T0 (t 3 months fter the strt of the ctive rehbilittion) nd t dischrge. All mesurements were done by trined tem of therpists. Dt were collected immeditely fter the mesurements to ensure blinding of previous scores. The prticipnts performnce on the self-selected skills ws lso

3 Evlution of ToCUEST in tetrplegi 1051 recorded on videotpes to llow for independent observers to blindly score the GAS. Dt nlysis A power nlysis indicted tht 10 persons per group were needed (given men improvement on the VLT of four points nd common s.d. of 13 (s observed between T0 nd dischrge in the Koepel -project dt), n lph of 0.01, power of 90% nd loss to follow-up of 10%). Sttisticl nlyses included Friedmn two-wy nlysis of vrince by rnk test nd Wilcoxon signed-rnk test for multiple comprison within groups. Between-group comprison included the Mnn Whitney U-tests. Alph ws set t Multiple comprisons included the Bonferroni correction. A sensitivity nlysis ws performed in order to ssess the contribution specific item tht ws trined (for exmple, VLT-item chosen), might hve on the generic outcome. The ltter ws done using univrite nlysis, 14 tht is, vrying the trined item by 10% ( þ 10% nd 10%) t T2 nd T3. In ll nlyses, the intention-to-tret principle ws used. Results Subjects Figure 1 depicts flowchrt of the different stges of the tril. Bseline chrcteristics of the ptient groups for both nlyses re shown in Tble 1. On the bsis of the ptients therpy booklets nd on therpy dtbses, therpy complince ws clculted to be 90%. No dverse effects of the trining were reported. Outcome mesures Only 3.6% of the primry outcome mesurements were missing. Tbles 2 nd 3 present the men, s.d. nd medin for the different groups nd mesurement moments. Anlysis A: ToCUEST Specific ctivities. As shown in Tble 2, fter trining, ll groups demonstrted n improvement on the COPM performnce, COPM stisfction nd GAS. Improvement generlly remined t follow-up. This ws corroborted sttisticlly for ll specific outcome mesures over the three mesurement moments (Po0.001) nd over the two time intervls of interest (T1 T2 nd T1 T3; Po0.015) in ll groups. Generic AHSP. An improvement on the VLT, the FIM nd the QIF ws observed between T1 nd T2, nd between T1nd T3. This improvement ws sttisticlly significnt for ll generic outcome mesures cross the three mesurement moments (Po0.04) nd in both intervls (T1 T2 nd T1 T3; Po0.02) in the totl group, but not in ll the different subgroups, s cn be observed in Tble 2. The univrite sensitivity nlysis showed no difference in results, tht is, vrying the trined item by ±10% hd no effect on the significnce level. Anlysis B: ToCUEST versus control group Tble 3 shows the improvement on the FIM, the QIF nd the VLT between T0 (3 months fter the strt of the ctive rehbilittion) nd dischrge in both groups. In the control Excluded (n=33): no response (n=8); not interested (n=8); work commitments (n=7); trvel distnce (n=3); too fril (n=2); no Arm Hnd Skilled Performnce problems mentioned (n=3); no needs (n=2) Excluded (n=12) no rel Arm Hnd Skilled Performnce problems identified using the COPM (n=10) Trvel distnce too long (n=1) Prticipted in other reserch progrm (n=1) ptients selected for eligilibilty (n=69) 36 invited for COPM 24 included to strt intervention Control group:11 ptients in rehbilittion receiving stndrd cre Active rehb group:12 ptients llocted to intervention: Post-rehb group:12 ptients llocted to intervention: 10 received llocted intervention 2 did not receive llocted intervention (Decubitus problems (n=1); motivtion problems (n=1)) 11 received llocted intervention 1 drop out (motivtion problems) 1 drop out (no T0 mesurement) Anlysis B: ToCUEST versus Control T0/Tdischrge (n=22) Anlysis A: ToCUEST T1/T2/T3 (n=23) Figure 1 Flowchrt of ptient inclusion. COPM, Cndin Occuptionl Performnce Mesure; T1, before trining; T2, fter trining; T3, t follow-up; T0, 3 months fter strt of ctive rehbilittion.

4 1052 Evlution of ToCUEST in tetrplegi Tble 1 Ptient chrcteristics nd bseline mesurement Anlysis A B ToCUEST ToCUEST Stndrd trining Group Totl Post-rehb Active-rehb Active-rehb Control n n n n n Number Gender (f; m) 8; 15 3; 8 5; 7 5; 6 3; 8 Motor completeness (AB; CD) 6; 17 1; 10 5; 7 5; 6 5; 6 Motor level (worst side t bseline) 3 (C7); 10 (C6); 9 (C5);1 (C0) 2 (C7); 5 (C6); 4 (C5) 1 (C7); 5 (C6); 5 (C5); 1 (C0) b 4 (C6); 5 (C5); 1 (C4); 1 (C0) b 4 (C6); 7 (C5) Men (s.d.) Men (s.d.) Men (s.d.) Men (s.d.) Men (s.d.) Age (yers) 47 (17) 46 (15) 49 (19) 50 (20) 38 (11) Time since injury (months) 32 (37) 59 (40) 8 (2.8) 5.5 (2) 6.5 (2) Length of trining (weeks) 8.4 (1) 8.2 (1) 8.4 (1) Time T2 T3 (weeks) 14 (2) 14 (2) 14.5 (2.5) Length of ctive rehbilittion (weeks) 43 (13) 56 (28) Time T0Fdischrge (weeks) 28 (13) 41 (24) UEMS 33 (10) 38 (9) 28 (10) 26 (8) 25 (8) COPM Performnce 3.2 (1.5) 3.4 (1.4) 3 (1.6) COPM Stisfction 3.1 (1.7) 3.1 (1.9) 3 (1.5) GAS 2 (0) 2 (0) 2 (0) VLT 66.5 (33) 84 (27) 46 (22) 25 (16) 28 (15) FIMmot 58 (24) 71 (18) 52 (26) 43 (24) 37 (19) QIF 15 (9) 19 (6) 11 (9) 9 (8) 9 (8) Abbrevitions: A, nlysis A; B, nlysis B; AB, C-SCI with AIS (Asi Impirment Scle) A or B (motor complete); CD, C-SCI with AIS C or D (motor incomplete); COPM, Cndin Occuptionl Performnce Mesure; f, femle; FIMmot, Functionl Independence Mesure motor; GAS Gol Attinment Scle; m, mle; QIF Qudriplegi Index of Function; T2, fter trining; T3, t follow-up; T0, 3 months fter strt of ctive rehbilittion; UEMS, Upper Extremity Motor Score); VLT, Vn Lieshout Test. See Figure 1. b Centrl cord lesion. group, the improvement ws sttisticlly significnt for the QIF nd the FIMmot (Po0.03). The trining group dditionlly reveled sttisticlly significnt improvement on the VLT (Po0.04). The improvement in the trining group seems somewht more, tht is, the men delt vlues of the VLT (the verge difference of the VLT between T0 nd dischrge) were 2.5 in the control group nd 5.0 in the ToCUEST group. Also the men delt vlues of the QIF were three nd four for the control nd the ToCUEST group, respectively. However, no sttisticlly significnt difference between the verge delt vlues of the VLT, the QIF nd the FIMmot between the control nd the ToCUEST group ws found. Discussion The present study imed to evlute the effects of ToCUEST on AHSP in tetrplegic ptients. In generl, it cn be concluded tht: () ToCUEST leds to n improvement in specific upper extremity skills not only in persons with C-SCI during rehbilittion, but lso in persons who hve finished their rehbilittion, (b) ToCUEST leds to generl improvement of AHSP in persons with C-SCI, (3) trining results (both specific nd generic) remin t follow-up. However, no significnt difference in the mount of improvement of generl AHSP between the ToCUEST group nd the control group ws found. It ws remrkble tht significnt improvement on specific ctivities ws seen not only in persons during their rehbilittion, but lso in persons who finished their ctive rehbilittion. To dte, most studies were unble to demonstrte considerble functionl chnges fter dischrge. 15,16 Yrkony et l. 15 reported tht functionl improvement occurs most rpidly during inptient rehbilittion nd ttributed this effect to the combintion of neurologicl recovery, intensity of the trining nd multidisciplinry pproch In the present study, the effect of neurologicl recovery in the postrehb group ws thought to be limited. By demonstrting importnt chnges fter dischrge, the present study suggests tht ptients who hve finished their rehbilittion my hve residul potentil to lern other ctivities. Future reserch should ssess the neurophysiologic processes behind the trining strtegies. Furthermore, it ws observed tht ptients in the post-rehb group hd chnging needs. They reported different needs fter rehbilittion thn before dischrge. The present study demonstrtes tht ToCUEST my ccommodte the demnd to trin on the chnging needs throughout ptients lives. 5,17 Additionlly, ToCUEST is offered s trining module, thus fcilitting re-dmission for limited mount of time to trin on specific needs. The fct tht results remin t follow-up my be ttributed to different fctors. First, ptients who re trined on their individul needs re more motivted. 18,19 This leds to closer dherence to the trining, to more effort of ptients to use the skills in dily life nd to mintin these ctivities fter finishing the trining, inducing n improved rehbilittion outcome. 19,20 Second, in ToCUEST, specific gols were formulted, which were nlyzed nd trined, combining principles of motor lerning with principles of trining physiology. 3 The importnce of tsk-oriented intensive trining ws emphsized in ToCUEST, s well s the shift from multi- to n inter- or trns-disciplinry pproch.

5 Evlution of ToCUEST in tetrplegi 1053 Tble 2 Outcome mesurements of specific nd generl AHSP in ToCUEST nlysis (nlysis A) Totl (n ¼ 23) Active-rehb (n ¼ 12) Post-rehb (n ¼ 11) Men s.d. Med Men s.d. Med Men s.d. Med GAS T T T b b b COPM Perf T T T b b b COPM Stis T T T b b b VLT T T T b b FIM mot T T T b c QIF T T T b b c c Abbrevitions: AHSP, rm hnd skilled performnce; COPM Perf, Cndin Occuptionl Performnce Mesure Performnce score; COPM Stis, COPM Stisfction score; FIMmot, Functionl Independence Mesure, motor; GAS, Gol Attinment Scle; Med, medin;, not sttisticlly significnt; QIF, Qudriplegi Index of Function; T1, before trining; T2, fter trining; T3, t follow-up; ToCUEST, tsk-oriented client-centered upper extremity skilled performnce trining; VLT, Vn Lieshout Test. Sttisticlly significnt, T1 T2, Wilcoxon, Po b Sttisticlly significnt, T1 T3, Wilcoxon, Po c Sttisticlly significnt, Friedmn, Po0.05. The ltter resulted in common rehb pproch, merging the expertise of both physicl nd occuptionl therpists. Third, lthough the trining durtion of 8 weeks ws in some cses considered (too) long, it my be crucil to mintin the level of the positive results t follow-up which is in ccordnce with generl trining principles nd principles of motor lerning (over-lerning principle). Future reserch focusing on vrying the durtion of the trining my provide more insight in this mtter. An improvement in generl AHSP ws found in ll C-SCI ptients nd bsed on the results of the sensitivity nlysis, it ws ruled out tht the improvement ws ttributed solely to the improvement of the trined items. For exmple, if eting ws trined, the generlized improvement ws not ttributble to the increse on the feeding item of the FIM lone. In short, generlized improvement of AHSP on tsks tht were not trined, my hve tken plce due to the ToCUEST trining. However, more in depth reserch is needed to further corroborte our dt on this issue. No sttisticlly significnt difference in improvement of generl AHSP between the ToCUEST nd the control group ws found. However, from clinicl point of view, it would suffice tht ToCUEST results in t lest n equl level of generl AHSP reltive to the therpy s usul. On the bsis of the findings in the study, it is expected tht the ToCUEST trining my led to reduction of inptient sty (time between T0 nd dischrge ws 28 weeks in the ToCUEST group nd 41 weeks in the control group). A shortening of the inptient sty my led to improved ptient s stisfction nd incresed qulity of life. A cost-effectiveness nlysis is plnned to shed light on the ltter issues. The present study hs some methodologicl limittions. Despite the fct tht the recruitment period ws 2.5 yers, the number of prticipnts ws smll. The limiting fctors regrding prticiption re shown in Figure 1. Mny ptients with lesion level t C8 hd no mjor problems regrding AHSP, indicting tht ToCUEST is mostly suitble in persons with lesion level of C7 or higher. Owing to the limited

6 1054 Evlution of ToCUEST in tetrplegi Tble 3 Outcome mesurements of generl AHSP in ToCUEST versus control nlysis (nlysis B) number of prticipnts, performing rndomized controlled tril ws not relistic. Furthermore, no specific outcome mesurements (like the COPM nd the GAS) were tken in the control group. The Medicl Ethics Committee decided tht it ws not ethicl to first sk ptients trining needs nd then tell them not to trin on these needs. As to blinding, ssessors were not blinded for intervention, except for the GAS-score. However, they were blinded regrding previous results. Finlly, to mesure improvement on the VLT, mesuring both the hnds gives more informtion thn mesuring the best hnd only, becuse in most cses the worst ffected hnd is trined. However, for nlysis B, only the best hnd ws mesured, often resulting in ceiling effect on the VLT outcome of best hnd. The present study hs demonstrted, despite some limittions, tht the ToCUEST trining module, which combines three importnt elements, tht is, individul gol setting, client-centeredness nd tsk-oriented trining into common frmework, is fesible nd beneficil in improving specific AHSP in C-SCI. Future reserch should im for the ToCUEST module to be evluted in rndomized controlled tril, involving more ptients nd to ssess for cost-effectiveness. Conflict of interest The uthors declre no conflict of interest. Acknowledgements ToCUEST (n ¼ 11) Control (n ¼ 11) Men s.d. Med Men s.d. Med VLT T Dischrge FIMmot T Dischrge QIF T Dischrge Abbrevitions: AHSP, rm hnd skilled performnce; FIMmot, Functionl Independence Mesure motor; Med, medin;, not sttisticlly significnt; QIF, Qudriplegi Index of Function; T0, 3 months fter strt of ctive rehbilittion; ToCUEST, tsk-oriented client-centered upper extremity skilled performnce trining; VLT, Vn Lieshout Test. Sttisticlly significnt, T0 dischrge, Wilcoxon, Po0.05. We thnk ll medicl nd prmedicl stff of the Spinl Cord Injury Unit of Adelnte Rehbilittion Centre for their kind co-opertion in this study. References 1 Snoek GJ, MJ IJ, Hermens HJ, Mxwell D, Biering-Sorensen F. Survey of the needs of ptients with spinl cord injury: impct nd priority for improvement in hnd function in tetrplegics. 2004; 42: Spooren AI, Jnssen-Potten YJ, Kerckhofs E, Seelen HA. Outcome of motor trining progrmmes on rm nd hnd functioning in ptients with cervicl spinl cord injury ccording to different levels of the ICF: systemtic review. J Rehbil Med 2009; 41: Spooren AIF, Jnssen-Potten YJM, Kerckhofs E, Bongers HMH, Seelen HAM. ToCUEST: tsk-oriented client-centered trining module to improve upper extremity skilled performnce in cervicl spinl cord-injured persons. 2011; 49: Wde DT. Gol setting in rehbilittion: n overview of wht, why nd how. Clin Rehbil 2009; 23: Cott CA. 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