7/27/2019 Pi is 0003999398902404

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1 4 3 3

Q ual ity o f L i f e and Traum at ic Spina l C ord InjuryNinn i Westgren, CNM, Richard Levi, MD, PhD

A B S T R A C T . W e s t g r e n N , L e v i R . Q u a l i t y o f l i f e a n dt r a u m a t i c s p i n a l c o r d in j u r y. A r c h P h y s M e d R e h a b i l 1 9 9 8 ;7 9 :1 4 3 3 -1 4 3 9 .O b j e c t i v e : T o d e t e r m i n e a s s o c i a t i o n s b e t w e e n m a j o r o u t -c o m e v a r i a b l e s a f t e r t r a u m a t i c s p i n a l c o r d i n j u r y ( S C I ) a n dq u a l i t y o f l i f e ( Q L ) .S u b j e c t s : O f a t o t a l p o p u l a t i o n o f 3 5 3 S C I p a t i e n t s , 3 2 0p a r t i c i p a t e d , 2 6 1 m e n a n d 5 9 w o m e n l i v i n g i n t h e g r e at e rS t o c k h o l m a r e a : 1 2 4 w e r e t e t r a p l e g i c , 1 7 6 w e r e p a r a p l e g i c ,a n d 2 0 h a d n o c l a s s i f i e d l e v e l . M e a n a g e w a s 4 2 y e a r s ( r a n g e ,17 to 78) .M e t h o d : T h e S w e d i s h S F - 3 6 H e a l t h S u r v e y w a s u s e d t oa s s e ss Q L . T h e S F - 3 6 i s a s e l f - a d m i n i s t e r e d q u e s t i o n n a i r ec o n t a i n i n g 3 6 i t e m s , d i v i d e d i n t o 8 m u l t i - i t e m d i m e n s i o n s ,c o v e r i n g p h y s i c a l f u n c t i o n , p h y s i c a l a n d e m o t i o n a l r o l e f u n c -

t io n , s o c ia l fu n c t io n , b o d i ly p a in , m e n ta l h e a l th , v i t a l i t y a n do v e r a l l e v a l u a t i o n o f h e a l th . N e u r o l o g i c , g e n e r a l m e d i c a l , a n dp s y c h o s o c i a l v a r i a b l e s w e r e o b t a i n e d f r o m t h e S t o c k h o l mS p i n a l C o r d I n j u r y S t u d y ( S S C I S ) d a t a b a s e . Q L i n d i c e s w e r ea n a l y z e d f o r t he S C I g r o u p a s a w h o l e , a s w e l l a s f o r s u b g r o u p s .D e s c r i p t o r s f o r s u b g r o u p s w e r e d e m o g r a p h i c v a r i a b l e s , p r e s -e n c e o r a b s e n c e o f c o m m o n m e d i c a l p r o b l e m s , a n d s u b j e c t i v ee v a l u a t i o n o f t h e d e g r e e o f i m p a c t o f t h e m e d i c a l p r o b l e m o nw e l l - b e i n g / d a i l y a c t i v i t i e s.R e s u l t s : Q L i n i n d i v i d u a l s w i t h S C I w a s s i g n i f i c a n t ly l o w e ri n a l l s u b s c a l e s a s c o m p a r e d w i t h a n o r m a t i v e p o p u l a t i o n . N od i f f e r en c e i n Q L w a s s e e n i n s u b g r o u p s a c c o r d i n g t o e x t e n t o fl e s i o n , w i t h t h e e x c e p t i o n o f p h y s i c a l f u n c t i o n i n g . S e v e r a lm e d i c a l c o m p l i c a t i o n s s u c h a s n e u r o g e n i c p a i n , s p a s t i c i ty , a n dn e u r o g e n i c b l a d d e r a n d b o w e l p r o b l e m s w e r e a s s o c i a t e d w i t hl o w e r Q L s c o r es .

S u m m a r y : Q L , a s d e f i n e d b y S F - 3 6 , i s b e t t e r i n p e r s o n si n j u r e d m a n y y e a r s a g o , a s c o m p a r e d w i t h t h o s e r e c e n t l yi n j u re d , s u g g e s t i n g a n a d a p t i v e p r o c e s s o p e r a t i n g o v e r a l o n gp e r i o d . T h e p r e s e n c e o f c o m p l i c a t i n g m e d i c a l p r o b l e m s , s u c ha s s e v e re p a in , p ro b le m a t i c s p a s t i c i ty , a n d in c o n t in e n c e , s e e mt o h a v e m o r e n e g a t i v e e f f ec t s o n Q L t h a n t h e e x t e n t o f S C I a ss u c h . 1998 by the American Congress of Rehabilitation Medi-cine and the American Academy of Physical Medicine andRehabilitation

A S S E S S M E N T S O F q u a l it y o f l if e ( Q L ) a r e i nc r e a si n g l yu s e d i n m e d i c i n e , e m b r a c i n g a w i d e r a n g e o f t a r g e tg r o u p s ~ 4 a n d p o p u l a t i o n s a s a w h o l e . C o n c e p t u a l i z a t i o n s v a r y ,From he SpinalisSCI ResearchUnit and Departmentof C linicalNeuroscience ndFamilyMedicine,Karolinska nstitute,Stockholm,Sweden.Submitted for publication anuary 15, 1998. Accepted n revised orm May 18,1998.Supportedby grants romStiftelsenLarsHiertasMinne,SiSdraSverigesSjuksktiter-skehem, SSSH ,Lundand V:~rdalStiftelsen.No comm ercialpartyhavinga direct inancial nterest n the resultsof the researchsupporting this art icle has o r w ill confer a ben efit upon the authors or upon anyorganizationwithwhich he authorsare associated.Reprint equests o N inni Westgren,CNM, SpinalisSCI R esearchUnit, N orrbackaS1, Karo linskaHospital,SE-171 76 Stockholm ,Sweden. 1998 by the Am ericanCongressof R ehabilitationMedicineand the AmericanAcademyof PhysicalMedicine nd Rehabilitation0003-9993/98/7911-482153.00/0

b u t t h e r e s e e m s t o b e a g r e e m e n t o n t h e s y n t h e s i s o f o b j e c t i v ea n d s u b j e c t i v e d i m e n s i o n s o f Q L , i n c l u d i n g p e r s o n a l v a l u e s a n da s p i r a t io n s . A w i d e n i n g r a n g e o f t r e a t m e n t o p p o r t u n i t i e s c r ea t e sa n e e d f o r e v a l u a t i o n o f o u t c o m e s w i t h r e s p e c t t o t h e i m p a c t o nQ L . In a d d i t io n , a s f in a n c ia l r e s o u rc e s a re l im i t e d , c o s t -e f f e c t iv e m a n a g e m e n t d e m a n d s q u a l i t y a s s u r an c e a n d m o n i t o r -i n g o f o u t c o m e s o f r e h a b i l i t a t i v e p r o c e d u r e s .O n e g r o u p t h a t h a s b e e n s t u d i e d w i t h r e g a r d t o Q L i s t h at o fin d iv id u a l s s u rv iv in g s p in a l c o rd in ju ry (S C I ) . 5-9 M e d ic a lm a n a g e m e n t o f S C I i s d e s i g n e d f i rs t t o s a v e l i v e s a n d s e c o n d t om i n i m i z e t h e c o n s e q u e n c e s o f t h e tr a u m a , t h e r e b y o p t i m i z i n gt h e c o n d i t i o n s f o r l o n g - t e r m s u r v i v a l w i t h a g o o d Q L . W i t hi m p r o v e d m e d i c a l c a r e t h e n u m b e r o f S C I s u r v i v o r s g r o w s , t h u sm a k i n g t h e n e e d f o r b e t t e r k n o w l e d g e a n d u n d e r s t a n d i n g w i t hr e g a r d t o s u b s e q u e n t d i s a b i l i t y a n d h a n d i c a p m o r e a p p a r e n t .

P r e v i o u s s t u d i e s o n S C I a n d Q L h a v e v a r i e d c o n s i d e r a b l yw i t h r e s p e c t t o m e t h o d a s w e l l a s a n a l y s i s . S e l e c t e d h o s p i t a lg r o u p s h a v e o f t e n b e e n s u r v e y e d b y m a i l e d a s s e s s m e n t p a c k -a g e s , r e s u l t i n g i n b i a s e d s a m p l e s a n d l o w r e s p o n s e r a t e s . Ac o m m o n l y u s e d m e t h o d i s a c o m p i l e d s u r v e y w i t h a n o v e r v i e wo f i s s u e s 10,11 o r t h e o p p o s i t e , fo c u s in g o n a s in g le i s s u e , e g ,s o c ia l s u p p o r t a n d Q L . 5,12 In a d d i t io n , i n s u f f i c i e n t c o n s id e ra t io nh a s s o m e t i m e s b e e n g i v e n t o t h e h e t e r o g e n e i t y i n a n S C Ip o p u l a t i o n w i t h r e s p e c t t o m e d i c a l a n d n e u r o l o g i c s t a tu s . T h i ss t u d y w a s d o n e t o a s s e s s Q L i n a t r ue p r e v a l e n c e p o p u l a t i o n b yu s i n g a w e l l - d o c u m e n t e d i n s t r u m e n t t h a t h a s b e e n u s e d f o ro th e r t a rg e t g ro u p s 13 a s w e l l a s fo r g e n e ra l p o p u la t io n s , 14t h e r e b y a l l o w i n g c o m p a r i s o n s t o b e m a d e .T h i s s t u d y i s p a r t o f t h e S t o c k h o l m S p i n a l C o r d I n j u r y S t u d y( S S C I S ) , i n w h i c h a r e g i o n a l p r e v a l e n c e p o p u l a t i o n i s e v a l u a t e dw i t h r e g a r d t o m e d i c a l , p s y c h o s o c i a l , a n d e c o n o m i c o u t c o m ev a r i a b le s . 1 5~ 7 B y th e d e s ig n o f S S C IS i t i s t h u s p o s s ib l e to g a ini n s i g h t i n t o t h e a s s o c i a t i o n b e t w e e n c l i n i c a l p a ti e n t d e s c r i p t o r sa n d Q L .T h e s p e c i fi c a i m o f t h i s s t u d y w a s t o i d e n t i f y a s s o c ia t i o n sb e t w e e n v a r i a b l e s o f e m p i r i c a l c l in i c a l i m p o r t a n c e a n d Q L i n an o n s e l e c t e d S C I p o p u l a t i o n .

S U B J E C T S A N D M E T H O D STh e SS CI S 15"17 i s a c o m p r e h e n s i v e s u r v e y o f s u b j e c t s w i t ht r a u m a t i c S C I , c o n s t i t u t i n g 9 3 % o f t h e r e g i o n a l p r e v a l e n c ep o p u l a t i o n i n t h e g r e a t e r S t o c k h o l m a r e a. A l l 3 5 3 s u b j e c t s in t h eS S C I S w e r e i n v i t e d t o p a r t i c i p a t e i n t h e p r e s e n t s t u d y a n d 3 2 0

a c c e p t e d . T h e g r o u p c o m p r i s e d 26 1 m e n a n d 5 9 w o m e n ; 1 24i n d i v i d u a l s w e r e t e t r a p l e g i c , 1 76 w e r e p a r a p l e g i c , a n d 2 0 h a dn o c l a s s i f i e d l e v e l . T h e m e a n a g e w a s 4 2 y e a r s ( r a n g e , 1 7 to 7 8 ) .T h e S w e d i s h S F - 3 6 H e a l t h S u r v e y w a s u s e d t o a s s e s s Q L . I sT h e S F - 3 6 i s a s e l f - a d m i n i s t e r e d q u e s ti o n n a i r e c o n t a i n i n g 3 6i t e m s . I t m e a s u r e s h e a l t h i n e i g h t m u l t i - i t e m d i m e n s i o n s ,c o v e r i n g f u n c t i o n a l s t a t u s, w e l l - b e i n g , a n d o v e r a l l e v a l u a t i o n o fh e a l th ( t a b le 1 ) . F o r e a c h d im e n s io n , i t e m s c o re s a re c o d e d ,s u m m e d , a n d t r a n s f o r m e d o n t o a s c a l e f r o m 0 t o 1 0 0, o n w h i c h0 ind ica tes w or st h ea lth an d 100 b est hea lth. 13,14,19-21 Th eS w e d i s h v e r s i o n o f t h e S F - 3 6 h a s b e e n t r a n s l a t e d a n d v a l i d a t e da g a i n s t a n o r m g r o u p b y S u l l i v a n a n d c o l l e a g u e s .22 T h e i r n o rmg r o u p w a s c o m p r i s e d o f 8 , 9 30 i n d i v i d u a l s w i t h a g e n d e rd i s t r i b u t i o n o f 4 8 .6 % m e n a n d a m e a n a g e o f 4 2 y e a r s . T h eS w e d i s h S F - 3 6 H e a l t h S u r v e y w a s p r o d u c e d w i t h i n t h e f r a m e -

Arch Phys Med Rehabi l Vo l 79 , November 1998

7/27/2019 Pi is 0003999398902404

2/7

1 4 3 4 Q U A L I T Y O F L IF E A N D T R A U M A T I C S C I, W e s t g re n

T a b l e 1 : T h e S F - 3 6 S u b s c a l e s a n d D e s c r i p t i v e S t a t is t i c s f o r t h e S C I G r o u p ( n = 3 2 0 ) i n C o m p a r i s o nW i t h S w e d i s h N o r m a t i v e D a t a (n = 8 , 9 3 0 )

SubscaleNormativeSCI Group Group

Low Scores Indicate La be l n~tern M SD M SD t p ESF u n c t i o n

P h y s i c a l f u n c t i o n i n gR o l e fu n c t i o n , p h y s i c a lR o l e f u n c t i o n , e m o t i o n a lS o c i a l fu n c t i o n i n gB o d i l y p a i n

W e l l - b e i n gM e n t a l h e a l t hV i t a l i t yG e n e r a l h e a l t h

L i m i t a t i o n s i n p h y s i c a l a c t i v it i e sP r o b l e m s w i t h w o r k / d a i l y a c t i v i t i e s a s a

r e s u l t o f p h y s i c a l h e a l t hP r o b l e m s w i t h w o r k / d a i l y a c t i v i t i e s a s a

r e s u lt o f e m o t i o n a l p r o b l e m sI n t e r f e r e n c e w i t h n o r m a l s o c i a l a c t i v i ti e s

d u e t o p h y s i c a l / e m o t i o n a l p r o b l e m sL i m i t i n g p a i nF e e l i n g s o f n e r v o u s n e s s a n d d e p r e s s i o nF e e l i n g s o f f a t i g u eF e e l i n g s o f p o o r h e a l t h , l i k e ly t o g e t w o r s e

PF 10 4 2 .5 31 .6 87 .9 19 .6 -3 9 . 6 .001 2 .31RP 4 57 .2 42 .6 83 .2 31 .8 14 .2 .001 .82RE 3 70 .4 40 .4 85 .7 29 .2 -9 .1 .001 .52SF 2 76 .7 26 .4 88 .6 20 .3 -1 0 . 2 .001 .59BP 2 5 7 .2 2 8 .5 7 4 .8 2 6 .1 -1 1 .7 . 0 0 1 . 67MH 5 7 4 .8 2 0 .4 8 0 .9 1 8 .9 -5 .7 . 00 1 . 32VT 4 6 1 .4 2 3 .0 6 8 .8 2 2 .8 5 .7 . 0 0 1 . 3 3GH 5 63 .9 23 .8 75 .8 22 .0 9 .5 .001 .54

* N u m b e r o f i t e m s i n c l u d e d i n th e s u b s c a l e.

w o r k o f t h e In t e r n a t io n a l Q u a l i t y o f L i f e A s s e s s m e n t ( I Q O L A )Pr oje ct to m atc h the or igi nal ver sio n. 14'15,E9-21N e u r o l o g i c , g e n e r a l m e d i c a l , a n d p s y c h o s o c i a l v a r i a b l e sw e r e o b t a i n e d f r o m t h e S S C I S d a t a b a s e . T h e S S C I S p r o t o c o la n d t h e m e t h o d o f d a t a c o l l e c t i o n h a s b e e n p u b l i s h e d p r e v i -o u s ly .23 Q L i n d i c e s w e r e a n a l y z e d f o r th e S C I g r o u p a s a w h o l e ,a s w e l l a s f o r s u b g r o u p s. D e s c r i p t o r s f o r s u b g r o u p s w e r e b a s e do n d e m o g ra p h ic a n d in ju ry d a ta ( a g e , a g e a t i n ju ry , t im e s in c ein ju ry , e x te n t o f i n ju ry , g e n d e r ) , c r i t e r i a fo r p re s e n c e o r a b s e n c eo f c o m m o n m e d i c a l p r o b l e m s r e l a t e d t o th e S C I , a n d e v a l u a -t i o n s b y t h e p a t i e n t r e g a r d i n g t h e i m p a c t o f t h e m e d i c a lp r o b l e m s o n w e l l - b e i n g / d a i l y l i fe . T h e s u b g r o u p s w e r e t h u sd e f i n e d b y v a r i a b l e s th a t a r e c o m m o n l y u s e d i n c l i n i c a l p r a c t i c et o d e s c r i b e i n d i v i d u a l s w i t h S C I .T h e m e d i c a l p r o b l e m s w e r e o p e r a t i o n a l l y d e f i n e d as f o l l o w s : N e u r o g e n i c p a i nD e f in i t i o n : P a in o f a b u rn in g , s t a b b in g , o r s h a rp - s h o o t in gq u a l i t y s e g m e n t a l l y a t o r d i f f u s e l y b e l o w t h e n e u r o l o g i cl e v e l o f l e s io n fo r a t l e a s t t h e 2 p re v io u s w e e k s o r fo r a tl e a s t fo u r 2 -w e e k p e r io d s d u r in g th e p a s t y e a r.C r i t e r i a : C la s s i f i e d a c c o rd in g to th e d e f in i t i o n b y th en e u ro lo g i s t a f t e r e l i c i t i n g a d e t a i l e d p a in h i s to ry .P a t i e n t e v a lu a t io n : T h e p a in , a c c o rd in g to th e d e f in i t i o n ,h a s a m o d e r a t e t o s t r o n g i n f l u e n c e o n w e l l - b e i n g / d a i l yl i fe . P r e s s u re s o re sD e f in i t i o n : S k in l e s io n s c a u s e d b y p re s s u re a n d r e s u l t in gi n s k i n b r e a k d o w n a n d r e q u i r i n g t r e a t m e n t.C r i t e r i a : A s o re , a c c o rd in g to th e d e f in i t i o n , t r e a t e d d u r in gt h e p r e v i o u s y e a r , a s d o c u m e n t e d b y m e d i c a l r e c o r d /h i s t o r y a n d / o r p r e s e n t a t e x a m i n a t i o n .P a t i e n t e v a lu a t io n : A p re s s u re s o re , a c c o rd in g to th ed e f in i t i o n , h a s a m o d e ra t e to s t ro n g in f lu e n c e o n w e l l -b e i n g / d a i l y l i fe . S p a s t i c i tyD e f i n i t i o n : A s y n d r o m e a s s o c i a t e d w i t h u p p e r m o t o rn e u r o n l e s i o n s , i n c lu d i n g o n e o r m o r e o f t h e f o l l o w i n g : av e l o c i t y - d e p e n d e n t i n c r e a s e o f t o n i c s t r et c h r e f l e x e s,i n c r e a s e d t e n d o n r e f l e x e s , o r o t h e r r e l e a s e p h e n o m e n as u c h a s in c re a s e d f l e x o r r e f l e x e s / f l e x o r s p a s m s .C r i t e r i a : T h e p re s e n c e o f s p a s t i c i ty , a c c o rd in g to th ed e f in i t i o n , at t h e t im e o f e x a m in a t io n .P a t i e n t e v a lu a t io n : S p a s t i c i ty , a c c o rd in g to th e d e f in i t i o n ,

h a s m o d e r a t e t o s t r o n g i n f l u e n ce o n w e l l - b e i n g / d a i l y l if e .

B l a d d e r f u n c t i o n p r o b l e m sD e f i n i t io n : D i s t u r b a n c e o f u r o l o g i c f u n c t i o n , s e c o n d a r y t oS C I , l e a d in g to in c o n t in e n c e , r e c u r re n t u r in a ry t r a c tin fe c t io n s , o r b o th .C r i t e r i a : P r e se n c e o f s y m p t o m s , a c c o r d i n g t o t h e d e f i n i -t i o n , d o c u m e n t e d b y m e d i c a l r e c o r d s/ h i s t o ry .P a t i e n t e v a l u a t io n : A u r o l o g i c p r o b l e m , a c c o r d i n g t o t h ed e f in i t i o n , h a s a m o d e ra t e to s t ro n g in f lu e n c e o n w e l l -b e i n g / d a i l y l i fe . B o w e l fu n c t i o n p r o b l e m sD e f i n i ti o n : D i s t u r b a n c e o f b o w e l f u n c t i o n , s e c o n d a r y t oS C I , l e a d i n g t o c o n s t i p a t i o n a n d / o r i n c o n t i n e n c e .C r i t e r i a : C o n s t ip a t io n a n d /o r f e c a l i n c o n t in e n c e , a c c o rd -i n g t o t h e d e f i n i t i o n , d o c u m e n t e d b y m e d i c a l r e c o r d s /h i s to ry .P a t i e n t e v a l u a t i o n : A b o w e l p r o b l e m , a c c o r d i n g t o t h ed e f in i t i o n , h a s a m o d e ra t e to s t ro n g in f lu e n c e o n w e l l -b e i n g / d a i l y l i fe . S e x u a l d y s fu n c t io nD e f i n i t i o n : I m p a i r m e n t o f s e x u a l f u n c t i o n s e c o n d a r y t oS C I , l e a d in g to , e g , im p o te n c e , a n e ja c u la to n , a n o rg a s m ia ,a n d / o r p o s i t i o n i n g p r o b l e m s i n m e n , a n d , e g , d i m i n i s h e dv a g i n a l l u b r i c a t i o n , a n o r g a sm i a , a n d / o r p o s i t i o n i n g p r o b -l e m s i n w o m e n .C r i t e r i a : S e x u a l d y s fu n c t io n , a c c o rd in g to th e d e f in i t i o n ,d o c u m e n t e d b y m e d i c a l r e c o r d s/ h i s to r y .P a t i e n t e v a lu a t io n : S e x u a l d y s fu n c t io n , a c c o rd in g to th ed e f in i t i o n , h a s a m o d e ra t e to s t ro n g in f lu e n c e o n w e l l -b e i n g / d a i l y l i fe .

Data AnalysisT h e a s s o c i a t i o n b e t w e e n c l i n i c a l a n d d e m o g r a p h i c v a r i a b l e sa n d Q L ra t in g s w e re t e s t e d u s in g th e t t e s t , c o m p a r in g th e l e v e l so f Q L i n s u b j e c t s w i th a n d w i t h o u t t h e g i v e n c h a r a c t e r is t i c o rs y m p t o m . A t w o - t a i l e d t t es t o f s i g n i f i c a n c e w a s u s e d .A n e s t i m a t e o f t h e m a g n i t u d e o f m e a n d i f f e r e n c e s w a s a l s oc o m p u te d a lo n g e a c h t t e s t . T h i s e f f e c t s i z e (E S ) i s c a l c u la t e d a st h e d i f f e re n c e b e t w e e n t h e t w o m e a n s d i v i d e d b y t h e s t a n d a r dd e v i a t i o n ( S D ) o f e i t h e r g r o u p . I n t h i s s tu d y , th e S D c o r r e s p o n d -i n g t o t h e c o m p a r i s o n g r o u p ( i e , t h e g r o u p w i t h o u t t h e g i v e nc h a ra c te r i s t i c ) , w a s u s e d to c a l c u la t e th e E S . In t e rp re t a t io n o fE S w a s b a s e d o n C o h e n ' s 24 d e f i n i ti o n o f t h r e e l e v e l s o f E S f o r

u s e w h e n t e s ti n g d i f f e r e n ce s b e t w e e n m e a n s . T h e l e v e l s g i v e nA r c h P h y s M e d R e h a b i l V o l 7 9, N o v e m b e r 1 9 9 8

7/27/2019 Pi is 0003999398902404

3/7

Q UAL I T Y O F L I F E AND T RAUM AT I C S C I, W es tg ren 14 35

by C oh e n a r e . 20 , . 50 , a nd . 80 , c o r r e s pond i ng t o s m a l l, m e d i um ,and large ef fec t s , respect ive ly .The p va l ue s f o r e a c h t t es t , a s w e l l a s t he c o r r e s po nd i ng E Sf o r e a c h c om p a r i s on , a r e g i ve n i n t a b le s 1 t h r ough 3 . The r i s k o fm a k i ng e i t he r a t ype I o r a t ype I I e r r o r a s ke d f o r a r e a s ona b l el e ve l f o r a c c e p t i ng a r e s u l t a s bo t h s t a t i s t i c a l l y a nd c l i n i c a l l ys i gn if i c an t . The a c t ua l p va l ue s a r e g i ve n w i t h t he c a l c u l a t e dES , w he r e by t he r e a de r ha s t he pos s i b i l i t y t o m a ke h i s o r he row n c o r r e c t i ona l l e ve l s .F i r st l y , a c o r r e c t i on o f t he p va l ue s w a s don e , d i v i d i ng . 05w i t h t he num be r o f SF- 3 6 s c a l e s , r e s u l t ing i n a ne w s i gn i f ic a nc el e ve l a pp r ox i m a t i ng . 006 . Se c on d l y , a s er i e s o f pow e r a na l ys e sw e r e c o m p u t e d t o d e f i n e t h e p o w e r c o r r e s p o n d i n g t o C o h e n ' ss ugge s t e d ES l e ve ls . W i t h a m e d i um e f f e c t c hos e n a s t he c r it i c a lES l e ve l , t he pow e r a na l ys i s y i e l de d a pow e r a bove . 80 i n a l lc om pa r i s ons bu t tw o ( ge nde r , pow e r = . 76 ; a nd p r e s s u r e s o re s ,pow e r = . 35 ). Thus , c a l c u l a t i ng w i t h . 006 a s t he c r i t i c a ls i gn i fi c a nc e l e ve l, w e a c c e p t t ha t w e ha ve on l y pow e r t o de t e c tef fec t s above .50.

RESULTST h e S C I g r o u p s c o r e d s i g n i fi c a n tl y l o w e r t h a n t h e n o r m a t i v eg r oup o n a l l s ubs c a l e s ( t ab l e 1 ). The d i f f e r e nc e i n Q L w a s l a r gei n t he s ubs c a l e s phys i c a l f unc t i on a nd phys i c a l r o l e f unc t i on ,w he r e t he ES e xc e e de d 0 .8 . Me d i um e f f e c t w a s s e e n i n a ll o t he rs ubs c a l e s e xc e p t m e n t a l he a l t h a nd v i t a l i t y , w he r e t he ES w a ss m a l l. D i f f e r e nc e s i n l e ve l s a nd c om p l e t e ne s s o f l e s i on w a s no tr e f l e c te d i n Q L s c o r e s , w i t h t he e xc e p t i on o f a l ow e r s c o r e i n thephys i c a l f unc t i on s ubs c a l e w i t h m or e e x t e ns i ve ne u r o l og i cdefici ts (f ig 1, table 2) .A ge a t i n j u r y m a de a d i f f e r e nc e w he n e va l ua t i ng Q L. Ac o m p a r i s o n b e t w e e n a g e g r o u p s o f t h o se 2 0 y e a r s a n d y o u n g e ra nd t hos e o l de r t ha n 20 ye a r s a t i n j u r y s how e d t ha t younge rpe r s ons s c o r e d h i ghe s t w i t h r e s pe c t t o phys i c a l f unc t i on ,phys i c a l r o l e f unc t i on , bod i l y pa i n , a nd s oc i a l f unc t i on ( t a b l e 2 ).Q L s c o r e s w e r e h i ghe r i n s ubg r oups w i t h l onge r t i m e s i nc ei n j u r y ( f ig 2 ) . Th i s w a s i l l u s tr a t e d by s i gn i f ic a n t l y l ow e r s c o r e son bo t h phys i c a l a nd e m ot i ona l r o l e f unc t i on a s w e l l a s s oc i a lf unc t i on i n t he g r oup w h o ha d be e n i n j u r e d 0 t o 4 ye a r s t ha n t heg r oup i n j u r e d 18 to 44 ye a r s . The l a t t e r g r oup c a m e c l o s e t o t heno r m i n t he s ubs c a l e s phys i c a l f unc t i on , bod i l y pa i n , ge ne r a lhe a l t h , v i t a l i t y , a nd m e n t a l he a l t h . The r e m a i n i ng s ubs c a l e ss how e d no s i gn i f i c a n t d i f f e r e nc e s be t w e e n g r oups ( t a b le 2 ) .G e nde r d i f f e r e nc e w a s s e e n i n v i t a l i t y , w he r e w om e n s c o r e dl ow e r t ha n m e n ( t a b le 2 ) . W he n e va l ua t i ng t he i m pa c t o f m a r i t a ls t a t u s on Q L, s i ng l e pe r s ons s c o r e d s i gn i f i c a n t l y l ow e r onv i t a l i t y a nd e m ot i ona l r o l e f unc t i on a s c om pa r e d w i t h t hem a r r i e d / c oha b i t a t i ng g r oup ( t a b l e 2 ) . N o d i f f e r e nc e i n Q L w a sf o u n d b e t w e e n t h e f u l l - t i m e e m p l o y e d S C I g r o u p a n d t h eno r m a t i ve g r oup . I n c on t r a s t , s i gn i f i c a n t l y l ow e r s c o r e s w e r ef oun d i n a ll e i gh t s ubs c a l e s a m o ng t hos e w or k i ng l e s s t ha n f u l lt im e o r w h o w e r e n o t e m p l o y e d ( ta b le 2 ) .A m o n g i n d iv i d u a ls w i t h m e d i c a l p r o b le m s , n e u r o g e n i c p a i n,p r ob l e m a t i c s p~ t i c i t y , a nd b l a dde r p r ob l e m s w e r e a s s oc i a t e dw i t h l o w e r Q L . E S w a s l a r g e f o r n e u r o g e n i c p a i n o n t h es ubs c a l e bod i l y pa i n a nd m e d i um on ge ne r a l he a l t h . O f t hes t u d i e d m e d i c a l p r o b l e m s , n e u r o g e n i c p a i n w a s t h e m o s tp r o n o u n c e d d e n o m i n a t o r o f l o w Q L . B l a d d e r p r o b l e m s h a d am e d i u m E S o n Q L i n t h e s u b s c a l e g e n e r a l h e a l t h , w h e r e a sp r ob l e m a t i c s pa s t i c i ty a f f e c t e d a l l s ubs c a l e s e xc e p t bod i l y pa i na nd ge ne r a l he a l t h w i t h a m e d i um ES ( t a b l e 3 ). The p r e s e nc e o fp r e s s u r e s o r e s w a s a s s oc i a t e d w i t h a low e r Q L i n t he phys i c a lf unc t i on a nd s oc i a l func t i on s ubs c a l e s ( t a b l e 3 ). P r ob l e m s w i t hbow e l f unc t i on w e r e a s s o c i a t e d w i t h a l ow e r Q L i n a ll s ubs c a l e s

bu t t he phys i c a l r o l e f unc t i on ( t a b le 3 ) . Se xua l dys f un c t i on w a s

a s s oc i a t e d w i t h a l ow e r Q L i n the s ubs c a l e s ge ne r a l he a l t h a ndsocia l funct ion ( t able 3) .D I S C U S S I O N

The p r e s e n t s t udy i s t he f i r s t s u r ve y o f Q L i n a ne a r - t o t a lr e g i ona l popu l a t i on o f SC I s ub j e c t s u s i ng a w e l l - doc um e n t e di ns t rum e n t . A f u r t he r a dva n t a ge w a s a h i gh r e s pons e r a t e ( 91% ) .T h e m a i n p u r p o s e o f t h e s tu d y w a s t o c o m p a r e Q L b e t w e e n S C Is ubgr oups . Th i s w a s pos s i b l e be c a us e o f the a va i l a b il i ty o fde t a i l e d da t a w i t h r e ga r d t o de m ogr a ph i c a nd m e d i c a l de s c r i p -t o r s . The s t udy l a c ks a m a t c he d c on t r o l g r oup i n s om ei m p o r t a n t a s p ec t s. A n y c o m p a r i s o n b e t w e e n t h e S C I p o p u l a t io na nd t he no r m g r oup s hou l d t hus be m a de w i t h c a u t i on .H ow e ve r , t he c om pa r i s on g i ve s a ge ne r a l pe r s pe c t i ve on Q La f t e r SC I . A s s oc i a t i ons f ound be t w e e n d i f f e r e n t va r i a b l e s a ndl ow e r Q L s c o r e s do no t ne c e s s a r i l y r e f le c t c a us a l r e l a ti ons h i ps .The SF- 36 ha s be e n va l i da t e d a nd f ou nd t o be a f e a s i b l e too lfor assessm ent of Q L in the genera l pop ula t io n 14,15,19,2 as w el las in d i f ferent pa t ien t g roups . 21,22 I t i s con s idere d im por ta nt th a ta he a l t h s u r ve y i s s e ns i ti ve a nd c om pr e he n s i ve t o t he f u ll r a ngeo f i l lne s s a n d t he r e f o r e t oo l s de s i gne d f o r a pa r t i c u l a r d i s e a s ea r e o f le s s va l ue be c a us e a n i nd i v i dua l m a y ha ve o t he r he a l t hp r ob l e m s t ha n t hos e c onne c t e d w i t h t he i n j u r y o r d i s e a s es tudied.Q L a f t e r SC I i s l ow e r i n a l l s t ud i e d va r i a b l e s t ha n i na b l e - bod i e d i nd i v i dua l s o f t he s a m e a ge . A n i m pa i r e d Q L i s i na c c o r d w i t h s om e p r e v i ous s t ud i e s i n SC I sub je c t s . 7 ,25 In te re s t -i n g l y , t he e xp l a na t i ons f o r a de c r e a s e d Q L i n SC I s ub j e c t s pu tf o r w a r d b y d i f f e r e n t a u t ho r s va r y c ons i de r a b l y . Wi t h i n ou r SC Is t udy popu l a t i on , no d i f f e r e nc e i n Q L w a s s e e n w he n c om pa r -i ng t he s ubg r oups i nc om pl e t e pa r a p l e g i a , c om pl e t e pa r a p l e g i a ,i nc om pl e t e t e t r a p l e g i a , a nd c om pl e t e t e t r a p l e g i a , e xc e p t f o rphys i c a l f unc t i on . Se ve r a l r e po r t s po i n t t o t he s ubo r d i na t ei m p o r t a n c e o f e x te n t o f i n j u r y a n d p e r c e i v e d Q L . 6'25-27C l a y t o na n d C h u b o n ' s s t u d y7 c on t r a d i c t s t he s e f i nd ings . A r e c e n tm e t a - a na l ys i s o f 32 r e po r ts f r om 1983 t o 1992 s ugge s t e d t ha tt he s e ve r i t y o f t he i n j u r y c o r r e l a t e s ne ga t i ve l y w i t h Q L, bu tc onc l u de d t ha t due t o l im i t e d r i go r o f r e s e a r c h de s i gn a nd po o rva l i d i t y o f m e a s u r e m e n t s de f i n i t i ve c onc l us i ons c ou l d no t bed r a w n f r om t he s e s t ud i e s . 9H i ghe r a ge a t i n j u r y ha s a ne ga t i ve i m pa c t on r e c ove r y .S t e ns m a n s r e po r t e d t ha t a ge o l de r t ha n 35 ye a r s a t t he t i m e o fi n j u r y w a s a s s oc i a t e d w i t h a r e duc e d c a pa c i t y t o c ope w i t h t hei n j u r y a s a ss e s s e d by Q L e va l ua t ions . Th e a g i ng o f t he body a ndt he m i nd a nd t he g r a dua l l o s s o f v i ta l i ty pu t s l i m i t s a nd r e qu i r e sbo t h m e d i c a l a nd s oc i a l a s s i s ta nc e t o a l a r ge e x te n t .G e nde r d i f f e r e nc e i s c u r r e n t l y ga i n i ng m or e a t t e n t i on i nm e d i c i ne . I n t h i s s t udy w om e n s c o r e d l ow e r t ha n m e n w i t hr e s pe c t t o v i t a l i t y . We ha ve p r e v i ous l y s how n t ha t a l a r ge rp r o p o r t io n o f w o m e n i n a n S C I p o p u l a t io n r e p o r t m e d i c a l,s oc i a l, a nd ps yc h o l og i c a l p r ob l e m s t ha n m e n . ~6 W om e n w i t hSC I a r e a l s o ove r r e p r e s e n t e d i n t he g r oup s u f f e r i ng f r ompsyc hia t r i c i l l hea l th . 28 This was not ref lec ted , h ow ever , in the i rQ L s c o r e s as m e a s u r e d b y S F - 3 6 .The a d a p t i ve p r oc e s s s e e m s t o ope r a t e ove r a l ong t im e , a s i ss u g g e s t e d b y h i g h e r Q L s c o r es i n s u b g r o u p s h a v i n g l iv e d l o n g e rwi th the i r in jury , despi te the fac t tha t wi th increas ing t ime af teri n ju r y , t he c um ul a t e d pe r c e n t a g e o f m os t c om pl i c a t i ons i n -creases success ive ly . 16 Ou r s tud y i s a t var ian ce wi th th a t ofC u s h m a n a n d H a s s e t t Y w h o r e p o r t e d n o d i ff e r en c e i n Q L w i thr e ga r d t o t i m e s i nc e i n j u r y .B e i ng m a r r i e d o r c oha b i t a t i ng m a y ha ve a pos i t i ve e f f e c t onv i t a l i t y a nd e m ot i ona l r o l e . Th i s i s i n a g r e e m e n t w i t h p r e v i ousar t i c les on socia l supp or t a nd heal th s ta tus a f ter SC I . 5 '12I nd i v i dua l s w ho w e r e s i ng l e , ha d c h r on i c pa i n , s e ve r e s pa s t i c -i t y , o r b l a dde r f unc t i on p r ob l e m s s c o r e d l ow e r on t he m e n t a l

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RP BP GH VT SF RE MHFig 1. Q L in neurologic subgroup s according to the SF-36 prof i le: - - ,no rm at ive data; - -O- - , com plete tetraplegia; - -O- - , incomp lete tet -raplegia ; - - - - , comple te paraplegia ; - - Q - - , incomple te paraplegia.PF, physical funct ioning; RP, role fun ct ion , physical; BP, bodi ly pain;GH , general h ealth; VT, vi tal i ty; SF, social funct ion; R E, role funct io n,emot iona l; MH , men t a l hea lt h .h e a l th s u b s c a le . T h i s s u b s c a le in c lu d e s in d ic a to r s fo r d e p re s -s i v e s y m p t o m s a s w e l l a s p s y c h o l o g i c a l d i s t re s s . O u r f i n d i n g sa re in a c c o rd w i th o th e r r e p o r t s 29,3 in th i s r e g a rd .E m p l o y m e n t h a s b e e n c o n s i d e r e d i m p o r t a n t f o r g o o d Q L . 5,6T h i s i s c o r ro b o ra t e d b y th e f in d in g s o f t h is s tu d y . H o w e v e r , t h i sv a r i a b l e is s t r o n g l y i n f l u e n c ed b y e c o n o m i c a n d s o c i a l o p p o r tu -n i t i e s, a s w e l l a s b e i n g r e l a t e d t o a g e . W h e n e v a l u a t i n g t h e s er e s u l t s o n e s h o u l d c o n s i d e r t h e S w e d i s h w e l f a r e s y s t e m . T h i ss y s t e m i n c l u d e s p e n s i o n s a n d e c o n o m i c a l s u p p o r t f o r t h eu n e m p l o y e d , a l l o w i n g n o n w o r k i n g i n d i v i d u a l s a r e l a t i v e l y h i g hs t a n d a rd o f l i v in g . D e s p i t e t h i s , t h e p re s e n t s tu d y in d ic a t e ss i g n i f ic a n t d i f f e r e n ce s i n Q L b e t w e e n e m p l o y e d a n d u n e m -p l o y e d i n d i v i d u a l s , p o i n t in g t o t h e p s y c h o s o c i a l v a l u e o f w o r k .M e d i c a l p r o b l e m s r e l a t e d t o S C I a n d t h e i r a s s o c i at i o n s to Q Lh a v e n o t b e e n s t u d i e d i n a s t r u c t u r e d m a n n e r p r e v i o u s l y .C h r o n i c n e u r o g e n i c p a i n h a d a s t r o n g n e g a t i v e a s s o c i a t i o n w i t hQ L , a s d i d s e v e r e s p a s t i c i t y a n d u r o l o g i c p r o b l e m s . T h ei m p o r t a n c e o f p a i n c o n t r o l f o r a g o o d Q L h a s b e e n r e p o r t e d b yo thers . 8,27 In a p rev i ous repo rt b y US, 16 a b o u t t w o t h i r ds o f t h eS S C I S p o p u l a t i o n r e p o r t e d p r o b l e m a t i c n e u r o g e n i c p a i n . T h el a c k o f e f f e c t i v e t r e a t m e n t m a k e s n e u r o g e n i c p a i n o n e o f t h em a j o r c h a l l e n g e s o f S C I m e d i c i n e . T r e a t m e n t o f p r o b l e m a t i c1 0 0 . . . . . . . . . . . . . . . . . . . .

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30 IPF RP BP GH VT SF RE MHFig 2. QL and t ime since injury: - - , no rmat ive data; - -- - , 0 to 4yrs;- - O -- , 5 to 17yrs; - -O- - , 18 to 44 yrs. PF, physical funct ioning; RP, rolefunct ion, physical; BE bodi ly pain; GH, general health; VT, vi tal i ty;SF, social funct ion; RE, role fun ct ion , emo t ional; M H, m enta l health.

s p a s t i c i ty is l i k e w i s e a c o m p l e x a n d d e m a n d i n g f i e ld . M a n a g e -m e n t o f u r o l o g i c p r o b l e m s h a s i m p r o v e d , b u t s u c h p r o b l e m s a r es t i ll a t t i m e s s o c i a l l y d e v a s t at i n g . T h e i n c r e a s in g n u m b e r o fa v a i l a b l e t r e a t m e n t m e t h o d s m a k e s i n d i v i d u a l c o n s i d e r a ti o n se a s ie r . A t t e n t i o n h a s l a t e l y b ee n d r a w n t o t h e i m p a c t o n Q L o fn e u ro g e n ic b o w e l p r o b le m s a s a r e s u l t o f S C I . 31,32 T h e e x te n t o fth e p ro b le m , h o w e v e r , i s st i l l l a rg e ly u n k n o w n a n d n e e d s to b efu r th e r r e c o g n iz e d . T h e re i s a r i s k th a t t h e im p o r t a n c e o fp r o b l e m s s u c h a s p a i n , s p a s ti c i ty , a n d i n c o n t i n e n c e m a y b eu n d e r e s t i m a t e d b e c a u s e t h e y d o n o t n e c e s s a r i l y c o r r es p o n d t oo b j e c t i v e c h a n g es i n o r g a n f u n c t io n , m a k i n g t h e i n d i v i d u a lh a n d i c a p h a r d t o e v a l u a t e .

S C I a n d i t s n e g a t i v e i m p a c t o n s e x u a l f u n c t i o n a n d a c t i v i t yh a s b e e n a to p ic m u c h d i s c u s s e d d u r in g th e l a s t d e c a d e . T h ei m p a i r m e n t o f m a l e s e x u a l a b i l i t y a nd f e r t i l i t y w a s t h e i n i t ia lf o c u s. 33 M o r e r e c e n tl y , w o m e n ' s s e x u a l p r o b l e m s h a v e b e e ne l u c i d a t e d Y T h e e f f e c t o f d i s a b i l i t y o n s e x u a l i t y i s i n d e e d ac o m p l e x m a t t e r a n d c a n n o t b e a d e q u a t e l y e x p l a i n e d b y s i n g l in go u t a s o l i t a r y fa c to r . S o m e i n d i v i d u a l s m a y p e r h a p s c h o o s e t ol i v e a s e x u a l l y a s a n a d e q u a t e c o p i n g s t r a t e g y . A d d i t i o n a l l y ,s e x u a l a c t iv i ty o f t e n i s r i g id ly d e f in e d a s in t e rc o u r s e , n e g le c t in gt h e p o s s i b i l i t y o f o t h e r s a t i s f y in g s e x u a l a c t i v it i e s a n d t h e r e b yf a l s e l y c o n c l u d i n g t h a t a l a r g e p r o p o r t i o n o f t h e S C I p o p u l a t i o ni s n o t s e x u a l ly a c t iv e . T h e r e s u l t s o f q u e s t io n n a i re s d e a l in g w i ths e x u a l m a t t e r s a r e a t r i s k o f m i s i n t e r p r e t a t i o n b e c a u s e o f t h ec o m p l e x m a t t e r o f t h e t o p i c . S t u d i e s u s i n g q u a l i ta t i v e a n a l y s e sm i g h t b e a m o r e a p p r o p r i a t e m e t h o d f o r i n v e s ti g a t i o n.

T h e r e h a b i l i t a t i v e r e s o u r c e s o f f e r e d b y t h e S w e d i s h h e a l t hc a re s y s t e m , in c lu d in g f in a n c ia l s u p p o r t fo r h o u s in g , w o rk -p la c e , a n d c a r a d a p ta t io n a n d f r e e a s s i s t iv e d e v ic e s (w h e e l -c h a i r s , e t c ) , a s w e l l a s m e d ic a l c a re a n d s u b s id i z e d m e d ic a t io n ,a l lo w s th e in d iv id u a l t o b e p a r t o f s o c ie ty a s a w h o le . T h u s ,t h e r e a re m e c h a n i s m s t o c o m p e n s a t e f o r c e r t a i n l o s s e s p o s e d o nt h e i n d i v i d u a l b y t h e p h y s i c a l i m p a i r m e n t . H o w e v e r , t h em e d i c a l c o n s e q u e n c e s o f t h e S C I a s s u c h c a n n o t b e f u l l yc o m p e n s a t e d f o r a n d m a y t h e r e f o r e l im i t Q L .T h e e x t e n t o f t h e i n j u r y o b v i o u s l y i n f l u e n c e s th e d e g r e e o fi m p a i r m e n t a n d d i s a b i l i t y in t h e e v e r y d a y l i f e o f a n i n d i v i d u a ll iv in g w i th a S C I . I t a p p e a r s , h o w e v e r , t o b e o f s u b o rd in a tei m p o r t a n c e t o Q L . B y c o n t r a s t , th e m e d i c a l p r o b l e m s a s s o c i a t e dw i t h S C I s e e m c l e a r l y t o a f fe c t Q L n e g a t i v e l y . N e u r o g e n i c p a i n ,p r o b l e m a t i c s p a s ti c i ty , an d b l a d d e r f u n c t i o n p r o b l e m s w e r e a l la s s o c i a t e d w i t h a l o w e r Q L . T h e i m p o r t a n c e o f a t h o r o u g ha n a l y s i s o f o p t i m a l t r e a t m e n t , s h o u l d a p r o b l e m o c c u r , m u s tt h e r e f o r e b e e m p h a s i z e d .Q L i s p a r t ly a r e f l e c t io n o f th e in d iv id u a l ' s a b i l i t y to c o p e a n da d a p t t o h i s o r h e r n e w l i f e s i t u a t io n . T h i s t im e -c o n s u m in gp ro c e s s i s i n i t i a t e d s h o r t ly a f t e r i n ju ry , A s th e t im e fo r i n p a t i e n tr e h a b i l i t a ti o n g e t s s h o r t e r b y t h e y e a r , m u c h o f t h i s p r o c e s s i n gh a s to t a k e p l a c e a f t e r d i s c h a rg e f ro m h o s p i t a l . I t i s r e a s o n a b leto b e l i e v e th a t t h i s p ro c e s s w o u ld b e n e f i t f ro m m o re s t ru c tu re di m p l e m e n t a t i o n o f p s y c h o l o g i c a l t r e a t m e n t m o d a l i t i e s , t h e re b ye n h a n c i n g t h e p r o c e s s o f c o p i n g .

R e f e r e n c e s1. D ennis RE, Williams W, Giangreco M E Cloninger CJ. Quality oflife as context for planning and evaluation of services for peoplewith disabilities. Exceptional Children 1993 59:499-512.2. Svedlund J, Sullivan M, Sj6din B, Liedman B , Lundell I. Qualityof life in gastric c ancer prior to gastrectomy. Quality o f Life Res1996;5:255-64.3. J6nsson A , Dock J , Ravnborg MH. Quality of life as a measure ofrehabilitation outcome in patients with multiple sclerosis. ActaNeurol Scand 1996;93:229-35.

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Arch Phys Med Rehab il Vo l 79 , Novem ber 1998