Life satisfaction 6 15 years after a traumatic brain injury

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1 Life stisfction 6 15 yers fter trumtic rin injury Jcosson, Lrs; Lexell, Jn Pulished in: Journl of Rehilittion Medicine DOI: / Link to puliction Cittion for pulished version (APA): Jcosson, L., & Lexell, J. (2013). Life stisfction 6 15 yers fter trumtic rin injury. Journl of Rehilittion Medicine, 45(10), Generl rights Copyright nd morl rights for the pulictions mde ccessile in the pulic portl re retined y the uthors nd/or other copyright owners nd it is condition of ccessing pulictions tht users recognise nd ide y the legl requirements ssocited with these rights. Users my downlod nd print one copy of ny puliction from the pulic portl for the purpose of privte study or reserch. You my not further distriute the mteril or use it for ny profit-mking ctivity or commercil gin You my freely distriute the URL identifying the puliction in the pulic portl Tke down policy If you elieve tht this document reches copyright plese contct us providing detils, nd we will remove ccess to the work immeditely nd investigte your clim. L UNDUNI VERS I TY PO Box L und

2 J Rehil Med 2013; 45: ORIGINAL REPORT Life stisfction 6 15 yers fter trumtic rin injury Lrs Jcosson, PhD 1,2 nd Jn Lexell, MD, PhD 2,3 From the 1 Medicl Rehilittion Section, Deprtment of Generl Medicine, Klix Hospitl, Klix, 2 Deprtment of Helth Sciences, Lund University, 3 Deprtment of Rehilittion Medicine, nd Skåne University Hospitl in Lund, Lund, Sweden Ojectives: To ssess stisfction with life s whole nd 10 domins of life stisfction in Swedish individuls fter trumtic rin injury, to descrie the reltionship with demogrphic, socil nd injury relted vriles, nd to compre the level of life stisfction with Swedish reference smple. Sujects: Fifty-one men nd sixteen women, 6 15 yers fter trumtic rin injury. Methods: Life Stisfction Questionnire (LiSt-11). Results: Mny of the prticipnts were, to some degree, stisfied with life s whole nd with ll 10 domins of life stisfction, ut significntly less stisfied with life s whole nd with 6 of the other 10 domins of life stisfction in comprison with the Swedish reference smple. The prticipnts sex, injury severity or yers post-injury ws not relted to ny domins in LiSt-11, wheres ge t time of injury, mritl sttus nd voctionl sitution were significntly relted to few of the domins. Conclusion: This study shows tht life stisfction cn e ffected severl yers fter trumtic rin injury. It ppers tht individuls who re mrried or cohiting nd productive hd higher life stisfction. This implies tht regining socil prticiption is n importnt fctor for life stisfction mny yers fter trumtic rin injury. Key words: long-term outcome; outcome ssessment; trumtic rin injury; qulity of life; questionnires. J Rehil Med 2013; 45: Correspondence ddress: Lrs Jcosson, Deprtment of Generl Medicine, Klix Hospitl, SE Klix, Sweden. E-mil: lrs.jcosson@nll.se Accepted My 3, 2013; Epu hed of print Aug 27, 2013 Introduction Life stisfction (LS) is generic concept representing n individul s contentment with life, or referred to s the degree of n individul s sujective pprisl s to whether his or her spirtions or gols nd chievements hve een ccomplished (1, 2). LS is result of n individul s dpttion process nd is often used s n end-point in rehilittion following diseses or injuries. By compring LS in individuls with life-long disility with tht of the generl popultion, the impct of the disility on contentment with life could e detected. Such comprisons re desirle, s the level of LS is not necessrily relted to the medicl condition or the injury severity. Trumtic rin injury (TBI) is leding cuse of life-long disility nd reduced LS. However, the outcome cn vry considerly (1) nd the level of disility is not linerly relted to LS (3). It is well-known tht LS is generlly lower mong individuls with TBI in the first yers fter injury (1), ut the few pulished studies on LS severl yers post- TBI report mixed findings. Some studies found tht LS my improve over time (4 6), wheres others reported no discernile difference compred with the generl popultion (3, 7). A popultion-sed study (5) confirmed results from previous studies with similr design (8), tht outcome, including LS, my continue to improve with time, even mny yers postinjury. Even though some studies hve indicted continuous improvement, the LS is generlly lower or, t est, equl to the generl popultion (4, 5, 8, 9). There is complex reltionship etween LS nd the multiple consequences of TBI over time fter the injury. Fctors such s sex, ge t time of injury, nd limittions in ctivities of dily living, hve een found to e wekly relted to LS (10 12). With time, it is lso possile tht fctors other thn the TBI itself my ecome more importnt for person s perception of their LS, s one could develop strtegies to djust or dpt to the TBI. In ddition, it is known tht eing mrried or cohiting nd eing productive (working or studying) is ssocited with higher LS (4, 10). Tken together, our knowledge of LS nd the reltionship with different fctors mny yers post-tbi is limited, nd further studies re therefore needed. In such studies, it is importnt to compre with dt from ntionl reference smples, s diverse cultures nd living conditions cn influence LS (13, 14). The im of this study ws to ssess stisfction with life s whole nd with 10 domins of life stisfction in individuls 6 15 yers fter TBI, to descrie the reltionship with sex, ge t time for injury, injury severity, time post-tbi, mritl sttus, nd voctionl sitution, nd to compre the levels of life stisfction with Swedish reference smple. Methods Prticipnts Prticipnts were otined from smple of 332 individuls with computed tomogrphy (CT) verified TBI nd rin injury symptoms 2013 The Authors. doi: / Journl Compiltion 2013 Foundtion of Rehilittion Informtion. ISSN

3 Life stisfction fter TBI 1011 who hd een trnsferred to the only neurosurgicl clinic in the region for neurosurgicl cre during the period 1 Jnury 1992 to 31 Decemer 2001 (15). From the popultion of 332 individuls, 106 met the inclusion criteri of eing etween 18 nd 65 yers of ge t the time of dt collection in yer 2007 nd totl of 88 (83 of the 106 potentil prticipnts) volunteered to prticipte (dt on their functioning nd disility hve een presented previously (16)). Sixty-seven of the 88 individuls were willing nd/or le to prticipte in the present study. Ten of the 21 non-prticipnts were excluded s they were too disled (e.g. severe cognitive impirments) to complete the self-rted questionnire nd 11 declined to prticipte. Dt on helth-relted qulity of life (using the Short Form 36; SF-36) nd life stisfction (using the Stisfction with Life Scle; SWLS) hve een reported for these 67 individuls (4). At the time of dt collection, the 67 prticipnts were lso sked to rte their LS using the Life Stisfction Questionnire (LiSt-11) (17, 18), which forms the sis for the present study. No significnt differences were found etween the 67 prticipnts nd the 39 (out of 106) nd the 21 (out of 88) non-prticipnts, respectively, regrding sex, ge t time for injury, injury severity or time post-injury. None of the 67 prticipnts hd cliniclly verified depression or showed symptoms t the interview of mjor depression. The study ws pproved y the Regionl Ethicl Review Bord, Umeå, Sweden (06-013M). Demogrphics Dt t the time of injury (sex, ge t injury, injury severity nd time post-injury) were otined from the dtse presented in the first study (15). The injury severity ws defined y the Rection Level Scle scores (RLS 85) t the time of dmission to the emergency deprtment, nd ws trnsformed into Glsgow Com Scle scores (GCS) (19). Bsed on the GCS scores, the individuls were primrily grouped into the 3 commonly used TBI severity groups: mild (GCS 13 15), moderte (GCS 9 12) nd severe (GCS 3 8) (20). As previous studies hve often comined the moderte nd severe TBI into one group, this ws lso done here to llow for comprison. Dt on their mritl sttus nd voctionl sitution were lso collected when the prticipnts responded to LiSt-11. To fcilitte the nlysis, mritl sttus ws dichotomized s: (i) single or (ii) mrried/cohitnt, nd voctionl sitution dichotomized s: (i) productive (i.e. studying, working full/ prt time in competitive work, sheltered work or looking for work) or (ii) not productive (i.e. full disility pension). Questionnire LiSt-11 ssesses glol stisfction with life in 1 item nd dominspecific stisfction in 10 items. In LiSt-11 there re 6 response levels: very stisfied; stisfied; rther stisfied; rther disstisfied; disstisfied; nd very disstisfied. LiSt-11, n extension of LiSt-9 (21), hs stle construct, nd hs een found to e vlid for the generl popultion (17, 18). All dt were collected y the first uthor, who hd ccess to the ckground informtion, ut did not review it efore or during the interview. A totl of 60 individuls completed the questionnires themselves, 3 individuls hd close reltive present, ut completed the questionnires independently, nd 4 individuls hd ssistnce with reding nd understnding some of the items in the questionnires, ut then completed them independently. Sttisticl nlysis Dt re presented s men, medin, stndrd devition (SD), minimum nd mximum, where pproprite. Reltive frequencies were clculted for the 6 response levels for the 11 items of LiSt-11. The 11 items of LiSt-11 were lso dichotomized s stisfied (very stisfied nd stisfied) nd not stisfied (from rther stisfied to very disstisfied), in greement with the developer of LiSt-11 (17). Non-prmetric sttistics were used to nlyse the dt, s LiSt-11 is n ordinl scle with 6 ctegories. Differences in levels of life stisfction with regrd to sex, ge t time of injury, injury severity, time post-injury, mritl sttus nd voctionl sitution, were detected nd nlysed using cross-tultions nd χ 2 tests. These vriles were chosen s they hve een used in our previous studies nd studies y other uthors. For ressurnce, we lso used Spermn s rnk correltion to ssess possile reltionships etween these vriles, ut the results were identicl, nd only those using cross-tultion nd χ 2 test re therefore presented. The level of LS ws compred with the Swedish reference smple (17, 18) using χ 2 tests. Results Dt on the 67 prticipnts re presented in Tle I. The men time since injury ws 10 yers (medin 9; SD 3; rnge 6 15 yers) nd their men ge ws 44 yers t the time of dt collection. A mjority (51 prticipnts; 76) were neurosurgiclly operted on s result of their TBI (58 of those with GCS 15, 62 of those with GCS 13 14, 86 of those with GCS 10, nd 91 of those with GCS 3 8). All of the prticipnts, except for 4 individuls with prtil ssistnce, lived completely independent in their own house or prtment. Approximtely hlf of the prticipnts were mrried or cohitnt, the other hlf single or divorced. Six prticipnts were single nd lived with their children nd 2 were still living with their prents. Approximtely 66 of the prticipnts were still productive, wheres 34 hd full disility pension (28 of those with mild TBI nd 40 of those with moderte-to-severe TBI). Approximtely hlf of the 67 individuls (52) were stisfied to very stisfied with life s whole, 31 were rther stisfied, nd 11 were disstisfied to very disstisfied (Tle II). The mjority (82) were stisfied with their cpility to mnge dily ctivities (ADL). A smll proportion of the smple ws disstisfied to very disstisfied (22 nd 10, respectively) with their somtic nd psychologicl helth. The Tle I. Chrcteristics of the 67 Swedish individuls 6 15 yers fter trumtic rin injury (TBI) Chrcteristics Sex, Men Women Age t time of injury, yers, men (SD) [rnge] 34 (13) [12 56] Cuse, Trffic ccidents Flls Other cuses Injury severity, n Mild Moderte-to-severe Mritl sttus t follow-up, n Mrried or cohitnt Single or divorced Voctionl sitution t follow-up, n Productive Not productive Other cuses include ssults or suicide ttempts nd sports nd recretionl ctivity. Voctionl sitution ws defined s: productive (i.e. studying, working full-/prt-time in competitive work, sheltered work or looking for work) or not productive (i.e. full disility pension).

4 1012 L. Jcosson nd J. Lexell Tle II. Percentges of self-reported levels of life stisfction in the 67 Swedish individuls 6 15 yers fter trumtic rin injury (TBI) Very stisfied Stisfied Rther stisfied Rther disstisfied Disstisfied Life s whole Voction Economy Leisure Contcts Sexul life Activities of dily living Fmily life (n = 41) Prtner reltionship (n = 35) Somtic helth Psychologicl helth Those who reported hving fmily. Those with prtner. Very disstisfied mjority of the group ws stisfied to very stisfied with fmily life (88) nd with prtner reltionship (89 of those who hd prtner). The voctionl sitution ws rted s stisfied to very stisfied y 42, wheres 30 ws disstisfied to very disstisfied with their voctionl sitution. Compred with the Swedish reference smple, the 67 individuls reported significntly lower stisfction with life s whole, voction, leisure, ADL, somtic nd psychologicl helth, ut no difference with regrd to economic sitution, contcts with friends, sexul life, fmily life, nd prtner reltionship (Tle III). When the smple ws divided into 2 groups, significntly lower LS remined for the moderte-to-severe TBI group regrding voction, ADL nd psychologicl helth. The mild TBI group rted their LS significntly lower for life s whole nd somtic helth compred with the Swedish reference smple. There ws no significnt difference etween men nd women for ny item in the LiSt-11 (Tle IV). Age t injury, injury severity (dichotomized s mild nd moderte-to-severe TBI) nd time post-injury hd no significnt effect on LS. On the other hnd, those who were mrried/cohiting, compred with those who were single, were significntly more stisfied with regrd to life s whole nd sexul life. Furthermore, those who were working or studying were significntly more stisfied with life s whole, their leisure, sexul life, ADL, fmily life, prtner reltionship nd somtic helth. Discussion In this study, we ssessed stisfction with life s whole nd with 10 domins of LS in individuls 6 15 yers fter TBI, nd compred the levels of LS with Swedish reference smple. Mny of the individuls were, to some degree, stisfied with life s whole nd with ll 10 domins of LiSt-11, ut significntly less stisfied with life s whole nd with 6 of the other 10 domins of LS in comprison with the Swedish reference smple. Furthermore, stisfction with life s whole nd the 10 rted domins were not relted to the prticipnts sex, injury severity or yers post-injury, wheres ge t time of injury, mritl sttus nd voctionl sitution were relted to few of the domins in Li-St-11. Tle III. Comprison etween the 67 Swedish individuls 6 15 yers fter trumtic rin injury (TBI) nd the Swedish reference smple. Vlues in percentges of very stisfied nd stisfied, dichotomized s stisfied in greement with the developer of Life Stisfction Qustionnire (LiSt-11) (17) Mild TBI p-vlue Moderte-tosevere TBI p-vlue Totl p-vlue Life s whole Voction Economy Leisure Contcts with friends Sexul life Activities of dily living < < Fmily life (n = 41) Prtner reltionship (n = 35) Somtic helth 44 < Psychologicl helth Difference compred with the ntionl smple ws tested with those individuls who reported to hve fmily. Difference compred with the ntionl smple ws tested with those 35 individuls who reported to hve prtner. Differences etween groups were tested with the χ 2 test. Swedish reference smple

5 Life stisfction fter TBI 1013 Tle IV. Differences in self-reported levels of life stisfction y sex, ge t the time for injury, injury severity, mritl sttus, nd voctionl sitution in the 67 Swedish individuls 6 15 yers fter trumtic rin injury (TBI). Vlues in percentges of very stisfied nd stisfied, dichotomized s stisfied in greement with the developer of Life Stisfction Qustionnire (LiSt-11) (17) Sex Men/women (n = 51/16) Age t time of injury Up to 35/ove 35 yers (n = 34/33) Injury severity Mild/moderte-tosevere (n = 32/35) Yers postinjury 6 10/11 15 yers (n = 43/24) Mritl sttus Mrried or cohiting/single (n = 34/33) Voctionl sitution Work or study/ disility pension (n = 44/23) Life s whole 53/50 53/52 53/51 44/67 67/38 (p = 0.021) 61/35 (p = 0.004) Voction 39/50 32/52 47/37 35/54 42/41 50/26 Economy 37/31 24/49 (p = 0.035) 38/34 33/42 27/44 36/35 Leisure 47/31 35/52 41/46 37/54 52/35 52/26 (p = 0.041) Contcts with friends 53/75 59/58 50/66 58/58 70/47 64/48 Sexul life 45/50 53/39 44/49 47/46 64/29 (p = 0.005) 59/22 (p = 0.004) Activities of dily living 82/81 85/79 91/74 84/79 88/77 96/57 (p < 0.001) Fmily life (n = 41) 87/90 (n = 31/10) 85/93 (n = 26/15) 90/86 (n = 19/22) 88/88 (n = 25/16) 88/88 (n = 33/8) 94/70 (n = 31/10) Prtner reltionship (n = 35) 85/100 (n = 27/8) 86/92 (n = 22/13) 85/93 (n = 15/20) 91/86 (n = 21/14) 88/100 (n = 33/2) 89/88 (n = 27/8) Somtic helth 35/63 41/42 44/40 35/54 46/38 55/17 (p = 0.004) Psychologicl helth 73/56 62/76 75/63 65/75 79/59 75/57 Forty-one individuls responded to the item Fmily life, of those hd 8 individuls fmily without spouse. Those with prtner, 2 individuls were not mrried/cohiting ut hd stle reltionship with prtner. Differences etween groups were tested with the χ 2 test. The lower level of LS compred with the Swedish reference smple indictes, in greement with previous studies (4, 8, 22), tht individuls mny yers fter TBI hve reduced LS in reltion to the generl popultion. The proportion of individuls eing stisfied (response levels 5 nd 6 on the item Life s whole ) in the present study is lso similr compred with other Swedish studies of people with rin injury or lte effects of polio (23 27). A Swedish follow-up study of individuls with mild TBI 10 yers post-injury (28) nd two popultion-sed studies from Denmrk (8) nd USA (5) rrived t the sme conclusion, tht there is very little or no improvement over time in LS. Some studies hve found significntly lower proportions of stisfction with Life s whole compred with the findings in the present study. One study (29) with reltively smll smple of individuls with severe TBI nd non-trumtic surchnoid hemorrhge, reported tht only 30 were stisfied with life s whole, nd tht tht LS declined etween 1 nd 5 yers for 6 of the 10 prticipnts. Another study reported tht 46 were stisfied with life s whole 3 yers fter mild TBI (23). In the present study, severl domins in LiSt-11 (voction, leisure, dily ctivities, somtic helth, nd psychologicl helth) were significntly lower thn the Swedish reference smple. This is lso in greement with previous studies of popultions with cquired rin injuries s well s other disled popultions (25, 27, 30, 31). The proportion eing stisfied with life s whole nd the 10 domins in LiSt-11 vries cross studies, prtly ecuse of the different degree of disility nd time since injury or disese onset. For exmple, Eriksson et l. (30) reported in follow-up 1 4 yers post-injury of 116 individuls with TBI or surchnoid hemorrhge significntly lower levels for voction, contcts with friends, sexul life, prtnership, fmily life, nd psychologicl helth compred with the results in the present study. Our results re more in line with results from long-term studies of mild TBI (23, 24), multi-trum (31), stroke in young ges (26), nd individuls with mild disilities fter whiplsh injury (32), supporting the contention tht the LS is relted to the disility severity. The stisfction with life s whole nd the 10 domins of LS were not relted to the prticipnts sex, which is in greement with previous TBI follow-up studies using LiSt-11 (23, 33). However, there were reltively few women in the TBI group in the present study, so the results should e treted with some cution. It is worth mentioning, however, tht only 2 items in the LiSt-11 (contct with friends nd ADL) were significntly different for men nd women in the Swedish reference smple (17), indicting tht sex differences in LS re rre. There ws no significnt reltionship etween injury severity nd LS (cf. Tle IV). One study reported reltionship etween milder injury nd higher LS (34), wheres other studies hve not found ny significnt reltionships (5). When our smple ws divided into 2 groups with regrd to injury severity (cf. Tle III) nd compred with the Swedish reference smple, some differences emerged. Those with moderte-to-severe TBI rted lower LS for more items thn those with mild TBI. This indictes tht injury severity my e fctor tht influences LS, nd it lso reinforces the complexity of ssessing LS in popultion of individuls with TBI. It is likely tht fctors ffecting individuls in generl, such s socil prticiption, eing mrried or cohiting, nd eing employed, re lso importnt fter TBI (10). Thus, it ws not surprising to find tht individuls in the present study, who were mrried or cohiting, nd voctionlly productive, hd significntly higher LS. Similrly, those tht were single lso rted stisfction with their sexul life significntly lower. However, in contrst to severl previous studies (25, 26, 29 31, 33, 35, 36) tht hve used LiSt-11, we found no reltionship

6 1014 L. Jcosson nd J. Lexell etween stisfction with fmily life nd prtner reltionship nd the other vriles (cf. Tle IV). Those tht were voctionlly productive, i.e. working or studying prt- or full-time, reported significntly higher stisfction with life s whole, leisure, sexul life, ADL, fmily life, prtner reltionship, nd somtic helth. This is well in line with other studies nd indictes the importnce of eing productive s predictor of high LS (4, 30, 33). To e voctionlly productive is often descried s highly vlued end-point following rehilittion nd is ssocited with more predictle nd stle economy. Furthermore, working or studying enhnces opportunities to engge in socil interctions nd more esily prticipte in leisure ctivities. It is therefore not surprising tht individuls in the TBI group tht were voctionlly productive were lso significntly more often stisfied with leisure ctivities. Furthermore, the lower stisfction with sexul life mong those individuls not eing voctionlly productive my indicte more socilly isolted sitution with less opportunity for close reltionships. The reltively few studies tht hve reported LS severl yers fter TBI hve indicted tht LS my improve s time goes y (5 9, 28). In the present study, there ws no reltionship etween yers post-injury nd LS. However, in previous study (37), sed on the sme dt pplying multivrite regression nlyses, we did find wek reltionship etween yers postinjury nd improved LS. A study y Johnsson & Bernspång (33) investigted the chnge in LS etween men of 3 nd 6 yers fter dmittnce to rehilittion progrmme ( men of 8 yers post-injury) for 36 individuls with cquired rin injury, of whom 24 individuls hd TBI. These uthors found lower LS compred with the Swedish reference vlues (17), ut no significnt chnge etween the 2 follow-ups. As LS depends on vriety of fctors, it is possile tht single instrument does not cpture the full extent of the concept. Interestingly, no study hs performed fce-to-fce comprison of instruments tht ssess LS in group of people with TBI. Such study could led to n incresed wreness of the concept nd the possiility to select pproprite ssessment tools for future studies. Limittions One limittion of this study is the reltively smll nd selected smple. We did not study those with mild TBI (without CT findings) nd those with severe TBI, who were unle to respond to the questionnire; thus the results cnnot e generlized to ll people with TBI. The vriles used to represent injury severity might e more vlid if it could hve een supplemented with other mesures, for exmple of post-trumtic mnesi. However, the originl dt from medicl records restricted such ssessments. In ddition, we did not otin informtion on recurrent TBI, which would hve een of interest to ssess with regrd to LS. As cognition nd cognitive impirments cn ffect the ility to respond to questionnires, it is possile tht those with more severe injury my hve found it difficult to rte the impct of the TBI on their LS. However, t the time of the interview, none of the prticipnts explicitly expressed concern out rting their LS, ut, nevertheless, the overll conclusions should e treted with some cution. Conclusion This study shows tht LS is ffected severl yers fter TBI, ut not relted to sex, injury severity or yers since injury. Individuls who chieved socil prticiption, s indicted y mrrige/cohittion nd voctionl productivity, hd higher life stisfction. This implies tht regining socil prticiption is n importnt fctor for LS mny yers fter TBI. REFERENCES 1. Dijkers M. Qulity of life fter trumtic rin injury: review of reserch pproches nd findings. Arch Phys Med Reh 2004; 85: S21 S Pvot W, Diener E. Review of the Stisfction With Life Scle. Psychol Assessment 1993; 5: Cicerone K, Azuly J. 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