QUALI TY OF LI FE OF PATI ENTS W I TH AUTOI MMUNE DI SEASES SUBMI TTED TO BONE
MARROW TRANSPLANTATI ON: A LONGI TUDI NAL STUDY
Fabio August o Bronzi Guim arães1 Manoel Ant ônio dos Sant os2 Érika Arant es de Oliveira3 Guim ar ães FAB, Sant os MA, Oliveira EA. Qualit y of life of pat ient s w it h aut oim m une diseases subm it t ed t o bon e m ar r ow t ran splan t at ion : a lon git u din al st u dy. Rev Lat in o- am En fer m agem 2 0 0 8 set em br o- ou t u br o; 1 6 ( 5 ) : 8 5 6 - 6 3 .
This st udy aim ed t o assess t he qualit y of life of pat ient s wit h aut oim m une diseases ( AI D) subm it t ed t o Bone Marrow Transplantation ( BMT) at two different m om ents: when the patient is adm itted at the hospital and at the m om ent of hospit al discharge ( 30 days aft er t he t ransplant at ion) . Pat ient s who at t ended t he BMT unit , were older than 18 years, with conditions and availability to voluntarily collaborate to the study were selected. Data were collected through a sem i- structured interview and the Medical Outcom es Study 36- I tem Short- Form Health Survey ( SF- 36) . The sam ple consist ed of 19 pat ient s at t ended at a universit y hospit al in t he int erior of São Paulo State, Brazil. The collected data suggest these patients’ quality of life is reduced before the realization of t he t r ansplant at ion, follow ed by a pr ogr ession in t heir diseases. I m m ediat ely aft er t he t r ansplant at ion, an im proved capacit y t o perform daily act ivit ies is observed, as well as a renewed possibilit y of m aking fut ure plans.
DESCRI PTORS: qualit y of life; bone m arrow t ransplant at ion; aut oim m une diseases; hem at opoiet ic st em cell t r ansplant at ion
CALI DAD DE VI DA DE PACI ENTES CON ENFERMEDADES AUTOI NMUNES SOMETI DOS A
TRANSPLANTE DE MÉDULA ÓSEA: UN ESTUDI O LONGI TUDI NAL
El obj et ivo de est e est udio fue evaluar la calidad de vida de pacient es con enferm edades aut o- inm unes ( EAI ) , som et idos al Transplant e de Médula Ósea ( TMO) , en dos m om ent os dist int os: en la adm isión del pacient e y dur ant e la ocasión del alt a hospit alar ia ( 30 días después del t r ansplant e) . Fuer on seleccionados pacient es at endidos en la unidad de TMO, m ay or es de 18 años, que pr esent ar on condiciones y disponibilidad par a colaborar volunt ariam ent e. Para recolect ar los dat os se ut ilizó un cuest ionario de ent revist a sem i- est ruct urado y el Cuest ionar io de Ev aluación de Calidad de Vida - SF- 36. La m uest r a fue com puest a por 19 pacient es at endidos en un hospit al- escuela del int erior del Est ado de San Pablo, Brasil. Los dat os obt enidos sugieren depreciación en la calidad de vida de esos pacientes antes de la realización del transplante, acom pañada de la progresión de sus enferm edades. I nm ediat am ent e después del t ransplant e ya se observa una percepción de m ej oría en la capacidad de realizar actividades del cotidiano y la posibilidad renovada de trazar planos futuros. DESCRI PTORES: calidad de vida; trasplante de m édula ósea; enferm edades autoinm unes; trasplante de células m adr e hem at opoy ét icas
QUALI DADE DE VI DA DE PACI ENTES COM DOENÇAS AUTO- I MUNES SUBMETI DOS AO
TRANSPLANTE DE MEDULA ÓSSEA: UM ESTUDO LONGI TUDI NAL
O obj etivo deste estudo foi avaliar a qualidade de vida de pacientes com doenças auto- im unes ( DAI ) , subm etidos ao Transplant e de Medula Óssea ( TMO) , em dois m om ent os dist int os: na adm issão do pacient e e por ocasião da alt a hospit alar ( 30 dias após o t ransplant e) . Foram selecionados pacient es at endidos na unidade de TMO, m aior es de 18 anos, que apr esent ar am condições e disponibilidade par a colabor ar volunt ar iam ent e. Par a a colet a de dados ut ilizou- se rot eiro de ent revist a sem i- est rut urada e o Quest ionário de Avaliação de Qualidade de Vida - SF- 36. A am ost ra foi com post a por 19 pacient es at endidos em um hospit al- escola do int erior do Est ado de São Paulo, Brasil. Os dados obt idos sugerem depreciação da qualidade de vida desses pacient es ant es da realização do t ransplant e, acom panhada da progressão de suas enferm idades. I m ediat am ent e após o t r ansplant e j á se per cebe m elhor a da capacidade par a r ealizar at iv idades do cot idiano e a possibilidade renovada de t raçar planos fut uros.
DESCRI TORES: qualidade de vida; t ransplant e de m edula óssea; doenças aut o- im unes; t ransplant e de célula-t r onco hem acélula-t opoécélula-t icas
1 Psychologist , Univer sit y of São Paulo at Ribeir ão Pr et o School of Philosoph y, Sciences and Languages, Brazil, e- m ail: fabio_br onzi@yahoo. com . br ; 2 Psychologist , Facult y, Universit y of São Paulo at Ribeirão Pret o School of Philosophy, Sciences and Languages, Brazil, e- m ail: m asant os@fflcr p.usp.br ; 3 Psychologist , Universit y of São Paulo at Ribeirão Pret o Medical School Hospit al das Clínicas, Brazil, e- m ail: erikaao@ffclrp.usp.br.
I NTRODUCTI ON
A
u t oim m u n e d iseases ( AI D) con st it u t e a h et er ogen eou s gr ou p of pat h ologies w it h v ar iable p r e se n t a t i o n a n d se v e r i t y, t r e a t e d w i t h a n t i -i n f l a m m a t o r y d r u g s, -i m m u n o su p p r e sso r s a n d im m unom odulat or s, w it h sat isfact or y r esult s in t he m aj ority of patients( 1). However, advancem ents in theAI D pharm acobiological t herapies have not prevent ed that a subpopulation of patients with progressive form s of these diseases has a bad prognosis. The low quality and ex pect ancy of life of t hese pat ient s j ust ify t he u se o f a g g r e ssi v e t h e r a p i e s l i k e h i g h d o sa g e ch e m o t h e r a p y, w i t h o r w i t h o u t b o n e m a r r o w t ransplant at ion ( BMT)( 2).
I n this scenario, autologous BMT is presented as a pot ent ial t r eat m ent for diseases lik e m ult iple sclerosis( 3- 4), system ic lupus erythem atosus( 5) and type
1 diabet es m ellit us( 6).
Nevertheless, BMT is not a definitive solution. I t i s an ag g r essi v e p r o ced u r e, w h i ch can ei t h er r ecov er pat ien t s’ lif e or lead t h em t o deat h . Th is p a r a d o x b a si ca l l y o ccu r s b e ca u se t h e im m unosuppression induced by t he pre- BMT regim e t urn pat ient s t em porarily vulnerable t o com plicat ions t hat cause risks, not only t o t heir physical int egrit y but also to their life( 7)
.
Because of these factors, qualify of life ( QoL) h as b een sh ow n as an im p or t an t cr it er ion in t h e effectiveness evaluation of certain interventions in the health area. This study used the concept of qualify of life related to health. I t refers to the perceptions people hold of t heir healt h, based on subj ect ive evaluat ion of t h eir h ealt h con dit ion an d t r eat m en t s t h ey ar e subm itted to. To analyze the chronic im pact of chronic diseases and int ervent ions in people’s daily life, it is n e ce ssa r y t o e v a l u a t e i n d i ca t o r s o f p h y si ca l f u n ct ion in g, social aspect s, em ot ion al an d m en t al st a t e, r ep er cu ssi o n o f sy m p t o m s a n d i n d i v i d u a l percept ion of wellbeing( 8).
OBJECTI VE
Th is st u d y aim ed t o ev alu at e t h e h ealt h -r elat ed qualit y of life of pat ient s w it h aut oim m une diseases who were subm itted to BMT in two different m om ents: when the patient is adm itted to the hospital and at discharge ( around 30 days aft er t he m arrow infusion) . This evaluation aim ed to: 1) understand the m eaning of quality of life for patients with AI Ds through sem i- st ruct ured int erviews ( qualit at ive approach) ; 2) evaluate the health- related quality of life ( through
SF-3 6 ) , SF-3 ) an d est ab l i sh co n n ect i o n s b et w een d at a obt ained t hrough t he inst rum ent s.
JUSTI FI CATI ON
I n t he last decades, t he scient ific lit erat ure has focused its attention on aspects of health- related q u al i t y o f l i f e i n i n d i v i d u al s w i t h ch r o n i c h eal t h condit ions.
Be ca u se BMT i s a n i n n o v a t i o n i n AI D t reat m ent s, st udies aim ed at evaluat ing not only it s t echnical effect iveness but also t he im pact it causes on patients’ life are essential. The m aj ority of studies has focused only on its clinical aspect and because of t h i s, ev al u at i n g t h e em o t i o n al an d p sy ch o so ci al aspect s involved in t he t reat m ent of an aut oim m une disease is im port ant .
Sp ecif ically, if ad eq u at ely m easu r ed , t h e h ealt h - r elat ed qu alit y of lif e m ak es it possible t o evaluat e t herapeut ic int ervent ion effect s, ret hinking som e m od alit ies, con sid er in g t h eir ef f ect s on t h e patient’s life in the m edium and long run( 9).
This study is inserted in the scenario in which Brazil stands out as pioneer in the application of BMT in som e of t h ese diseases an d f ocu ses on r esu lt s obt ained in t he Bone Marrow Transplant Unit ( BMTU) at the Hospital das Clinicas, Medical School at Ribeirão Pr et o ( HCFMRP) – t he only public healt h ser v ice in t he count ry t hat perform s t his t herapeut ic.
METHOD
Th e q u an t it at iv e m et h od is ev id en ced b y p r ev iou s an d t ech n ical h y p ot h eses of sy st em at ic verificat ion, in t he search for causal explanat ions of t he st udy phenom ena( 10). This m et hod aim s t o know
and cont rol variables, elim inat ing confusing fact ors. I t is concerned with validity and reliability, with a view to producing theoretical generalizations. I n the health co n t e x t , t h i s m o d e l i s f r e q u e n t l y r e l a t e d t o epidem iological st udies, leaving concer ns r elat ed t o im plicit su bj ect iv e fact or s for t h e h u m an ar eas t o st udy( 11).
This study aim ed to integrate the advantages of both the quantitative and qualitative m ethods. This int egrat ion was possible t hrough t he t riangulat ion of dat a, t hat is, j oint ly applying t heory and t echnique, as w ell as est ablish in g con n ect ion s bet w een dat a obt ained t hrough t he inst rum ent s used( 10).
Th e p r oj ect w as ap p r ov ed b y t h e ser v ice coor dinat ion and Resear ch Et hics Com m it t ee at t he Ho sp i t a l d a s Cl ín i ca s, FMRP- USP ( p r o cess HCRP num ber 9613/ 2003) .
The sam ple was com posed of 19 patients with aut oim m une diseases, bot h gender s, subm it t ed t o BMT at the BMTU, HC- FMRP- USP. All patients who m et t he inclusion crit eria and were at t ended at t he unit bet w een Decem ber 2003 and Decem ber 2005 w er e included in the study. The selection criteria were: AI D diagnosis; ar least 18 years of age; under t reat m ent i n p r e an d p o st BMT at t h e BMTU i n t h e p er i o d delim it at ed for ev alu at ion ; pr esen t con dit ion s an d a v a i l a b i l i t y t o v o l u n t a r i a l y co l l a b o r a t e w i t h t h e research and cognitive abilities and other basic m ental funct ions.
Table 1 presents a characterization of patients who participated in the investigation according to their sociodem ogr aphic pr ofile.
Table 1 – Distribution of patients subm itted to BMT by the sam ple’s sociodem ographic profile, Ribeirão Preto, SP, 2003- 2005
t n a p i c i t r a
P Age Marital
s u t a t s -O / n o i s s e f o r P n o i t a p u c
c Diagnosis*
f o h t g n e L s i s o n g a i d ) s r a e y ( a v i e
N 41 Marired Teacher TA 13
o l u a
S 38 Marired AdBmuisniinsetrsastor MS 6
s o g n i m o
D 52 Marired Engineer MS 8
o i v lí
S 39 Marired Physiotherapist P 5 o
r a v l
Á 50 Marired Physician MS 10
a t r e b o
R 44 Marired PErovmenottser SLE 11
o d r a n o e
L 24 Cohabtiant Painter D 4months
a n a v li
S 42 Marired Business n o s r e
p MS 8
a t r a
M 41 Divorced Merchant MS 10
e r d n a x e l
A 27 Marired Nursing y r a il i x u
A D 3months
a t a n e
R 37 Marired Teacher MS 7
o d l a v s
O 51 Marired Auwtoonrokmeorus MS 8
e g n a l o
S 26 Single Educator P 7
a li e
L 30 Cohabtiant Biologist MS 9
a y a r o
S 43 Divorced Housewfie MS 7
a l e c r a
M 48 Marired Secretary MS 10
l a v r e b o
R 54 Marired Merchant MS 5
a s s ir a l
C 36 Marired Secretary ME 7
a i c í
L 32 Single Archtiect ME 6
TA ( Takayasu’s Art erit is) ; P ( Pem phigus) ; EM ( Mult iple sclerosis) ; SLE ( System ic Lupus Erym athosus) ; D ( type 1 Diabetes Mellitus)
I t is observed in Table 1 t hat , am ong t he 19 par t icipant s, 11 w er e fem ale. The sam ple’s aver age age was 39.7 years ( se= 9.04) , ranging from 26 to 54 y e a r s. Pa t i e n t s w e r e m o st l y m a r r i e d a n d h a d r em uner at ed act iv it ies t hat v ar ied accor ding t o t he level of qualificat ion and required educat ion, while 10 part icipant s had a higher educat ion degree. I t is also observed that the predom inant prim ary disease in this sam ple was Mult iple Sclerosis ( 13 pat ient s) and t hat diagn osis t im e v ar ied f r om 3 m on t h s t o 1 3 y ear s ( X= 7.3 years; se= 3.2) . All part icipant s are referred t o by fict it ious nam es.
Th e BMTU – HC- FMRP- USP w as cr eat ed in 1992. I t is a facility with seven beds and counts on a m u l t i p r o f essi o n a l t ea m co m p o sed o f p h y si ci a n s, n u r se s, n u r si n g a u x i l i a r i e s, so ci a l w o r k e r s, p h y si o t h e r a p i st s, n u t r i t i o n i st s, p sy ch o l o g i st s, occupational therapists and dental surgeons. The BMT in AI D initiated its activities in June 2001 and, on the av er ag e, t w o t r an sp lan t at ion s ar e p er f or m ed p er m ont h.
The participation of patients in the study was volunt ary and t here was no refusal. Five part icipant s died between 7 and 15 days after the transplantation.
I nst r um ent s
Medical Out com es St udy 36- I t em Short - Form Healt h Sur v ey ( SF- 36)
The SF- 36 is a m ult idim ensional inst rum ent for generical evaluat ion of t he perceived healt h st at e or, as it has been called m or e r ecent ly, t he healt h-r elat ed q u alit y of lif e, of easy ad m in ist h-r at ion an d u n d e r st a n d i n g , o r i g i n a l l y cr e a t e d i n En g l i sh( 1 3 ),
translated and validated in Brazil( 8). I t is com posed of
or em otional problem s); Vitality (evaluates feelings of t iredness and exhaust ion and t heir persist ence over t im e) ; Role Lim it at ions due t o Em ot ional Pr oblem s ( ev al u at es l i m i t at i o n s t o w o r k o r p er f o r m o t h er activities due to em otional problem s) ; General Mental Healt h ( ev alu at es f eelin gs of an x iet y, depr ession , alt ered behavior, em ot ional lack of cont rol and t heir persistence over tim e). The results of each dim ension varied from 0 to 100, in which zero corresponds to the worst health state and 100 to the best health state(8,13).
Sem i- st r uct ur ed I nt er v iew s
Sem i- st ruct ured int erviews were used, based on t he researchers’ pract ical experience. They aim ed t o ch ar act er ize t h e su b j ect s r eg ar d in g t h eir ag e, m ar i t al st at u s, ed u cat i o n , o ccu p at i o n , l en g t h o f diagnosis and ident ify phy sical changes, as w ell as changes in social r elat ions aft er t he appear ance of t h e a u t o i m m u n e d i se a se i n p a t i e n t s’ l i f e . Th i s identification is im portant because the SF 36 does not per m it specif y in g t h ese ch an ges. I n addit ion , t h e int erview allow s one t o know pat ient s’ perspect ives in relation to the BMT, expected difficulties ( pre- BMT) and t hose r eally faced ( post - BMT) , as w ell as t heir expect at ions and fut ure plans.
Dat a Collect ion
The instrum ents were applied in the pre- BMT, upon t he pat ient s’ adm ission t o t he hospit al, in t he BMTU nur sing w ar d. Post - BMT dat a w er e collect ed d u r i n g f o l l o w - u p s, a r o u n d 3 0 d a y s a f t e r t h e t ransplant at ion, at t he BMTU out pat ient clinic or t he Su p p o r t Gr o u p f o r Bo n e Ma r r o w Tr a n sp l a n t e d ( SGBMT) Pat ient s.
I n t e r v i e w s w e r e a u d i o r e c o r d e d a f t e r p a r t i ci p a n t s’ co n se n t . A p r e v i o u sl y e st a b l i sh e d sem i - st r u ct u r ed scr i p t w as f o l l o w ed an d ap p l i ed in d iv id u ally an d f ace- t o- f ace.
Dat a analy sis
I n t e r v i e w s w e r e f u l l y t r a n scr i b e d a n d qualit at ive analysis was used, aim ing t o ident ify t he pat ient s’ concept s, beliefs, v alues, m ot iv at ions and at t it u d es in r elat ion t o t h eir ex p er ien ce w it h t h e disease and transplantation. Them atic content analysis w as used. I t consist s of: pr e- analysis ( or ganizat ion of m at erial and syst em at izat ion of ideas) ; analyt ical d escr ip t ion ( cat eg or izat ion of d at a in u n it s) an d r ef er en t ial in t er p r et at ion ( t r eat m en t of d at a an d interpretation based on the literature)( 14). The analysis
of t he SF- 36 result s followed recom m endat ions from lit erat ure( 8). Aft er dat a collect ion, t he dat a obt ained
through this scale were subm itted to statistical analysis. The level of significance adopt ed was p£0.05. I t was init ially verified whet her t he differences bet ween t he m om ent s ( pre- BMT and post - BMT) present ed norm al dist ribut ion t hrough Kolm ogorov- Sm irnov’s t est . Aft er t he nor m alit y hipot hesis w as not r ej ect ed, t he t w o m om en t s w er e t h en com p ar ed , aim in g t o d et ect sign ifican t differ en ces bet w een t h e obt ain ed dat a, t h r ou gh Wilcox on ’s n on - par am et r ic t est for pair ed sam ples.
RESULTS
The result s of 14 subj ect s evaluat ed in t he pre and post BMT phases were com pared. The results of t he rem aining subj ect s, who died, were excluded from the analysis since the obj ective of the study was t o com par e dat a obt ain ed in t h e t w o m om en t s of t r eat m ent .
Healt h- relat ed qualit y of life
The average result s from t he SF- 36 scale in t he ev aluat ion of t he pr e and post t r ansplant at ion st ages were syst em at ized in Table 2.
t n e n o p m o C s t n e m o M T M B -E R
P POST-BMT
e g a r e v
A SE Average SE p*
t n e n o p m o C l a c i s y h P g n i n o it c n u F l a c i s y h
P 24.29 31.92 32.14 34.57 0.09
s m e l b o r P l a c i s y h P o t e u d s n o it a ti m i L e l o
R 23.21 24.93 30.36 35.60 0.54
n i a P y li d o
B 67.29 28.53 62.00 29.44 0.42
s n o it p e c r e P h tl a e H l a r e n e
G 67.14 20.03 71.57 15.09 0.41
t n e n o p m o C l a t n e M y ti l a ti
V 67.14 19.88 59.29 18.59 0.24
g n i n o it c n u F l a i c o
S 64.25 28.95 63.39 30.41 0.79
s m e l b o r P l a n o it o m E o t e u d s n o it a ti m i L e l o
R 59.50 45.66 59.57 43.74 0.88
h tl a e H l a t n e M l a r e n e
G 76.00 27.08 71.71 16.64 0.40
Table 2 – Average results obtained through the application of SF- 36 in the sam ple of patients who survived the BMT. Ribeirão Pret o, SP, 2003- 2005
According to the statistical analysis, there was no significant alt erat ion in any of t he qualit y of life com ponents evaluated by this instrum ent. On the other h a n d , t h e l e v e l o f si g n i f i ca n ce i n t h e Ph y si ca l Fu n ct i o n i n g co m p o n e n t i s cl o se t o t h e a d o p t e d ( p≤0 . 0 5 ) , w h ich sh ow s a t en den cy of sign if ican t ly higher post BMT t han pre BMT values.
Pre BMT int erview
The analysis of int erviews revealed not only aspect s of t h ese pat ien t s’ h ist or y of life, bu t also d i f f i cu l t i es t h ey h av e f aced o v er m an y y ear s o f experience with chronic diseases and their progressive and disabling course.
I n t e r v i e w s ca r r i e d o u t i n t h e p r e t ransplant at ion phase allowed researchers t o obt ain dat a on t he part icipant s’ life hist ory, experience wit h t he disease and expect at ions regarding t he BMT.
Lo n g e x p e r i e n ce w i t h t h e d i se a se a n d dependency on health services: Am ong the14 patients who survived t he BMT, 12 had been diagnosed quit e som e tim e ago. They had already experienced several t reat m ent s and a long peregrinat ion t hrough healt h services. I n som e cases, no t reat m ent had achieved t he desired effect . I t was not iced t hat t hese pat ient s i n v ar i ab l y r each ed t h e t r an sp l an t at i o n r ep o r t i n g t ir edn ess af t er su ccessiv e u n su ccessf u l t r eat m en t at t em pt s: The decision w as t o t r y all im m unosupr essor s and t hey didn’t w or k any m or e. I ’d hav e pain all t he t im e,
nev er w ok e up or opened m y ey es w it hout pain. So t he pain,
is lik e, m y con st an t com pan ion ? No! I t h in k lik e, it ’s an
aggr essiv e t r eat m ent ? Yeah! Unfor t unat ely , for t he good cells
t oo. But t he disease is v er y aggr essiv e, so w e’ll hav e t o use
heav y w eapons. ( Neiv a, 41)
Rout ine lim it at ions and change of life: The disease for t hese pat ient s is a fact or t hat t riggered several changes in t heir lives. So, difficult ies em erge in t he perform ance of daily t asks. Lim it at ions due t o progressive loss of abilit ies m ake t hem give up t heir pr ofession al act iv it y becau se t h ey ar e n ot able t o anym ore, or even retire early. From the psychological point of view, discouragem ent and negat ive feelings gradually escalat e and are int ensified by dependency on other people to perform daily tasks. On the other h an d , in som e cases, t h e d isease ap p ear s as an opportunity to reflect on life, leading to a re- evaluation o f b e l i e f s a n d v a l u e s a n d t o a m o r e a ccu r a t e perception of their hum an condition: I t helped to face it m ore easily, with less fear. I was afraid of everything. Today I ’m
self sure. I used t o be a person who’d not go anywhere ‘cause I ’d
get sick, I ’d stum ble. Now, I have m y difficulties, so I have to
adapt to take care of m y problem s. ( Soraya, 43)
Som e reports related to the occurred changes d eser v e t o b e h ig h lig h t ed in t h e an aly sis of t h e int er v iew s. All pat ient s r epor t pr ofound changes in t heir daily r out ine w it h gr adual aggr av at ion of t he disease: Today, because of t his physical aspect , I ’m very dependent on everything, you know? For little things, like getting
a glass of water, and dependency for m aj or things like taking a
shower, see? So, I see m yself, som etim es, really upset, m ore
anxious, m ore annoying, m ore irrit at ed, j ust because I can’t do
t hings by m yself. ( Álvaro, 50)
I n fact, t he m ost noticeable changes are the physical and bodily changes. However, the perception of change, m any t im es subt le, in t heir life st yle and on how t hey relat e wit h t hem selves, wit h t he world a n d p e o p l e , a s w e l l a s t h e w a y t h e y d e a l w i t h pr oblem s, w er e also r ecur r ent in t heir r epor t s: I ’m learning how to deal with m y lim itations. Everyday I have to
learn a little, because the disease progresses a little everyday.
As I t old you before, driving was an autom atic thing and I haven’t
driven for more than two years now, so I’m adapting, you know?
(Roberval, 54)
Fam ily r eor ganizat ion: Wit h r espect t o t he pot ent ial changes per ceiv ed in t he int er act ion w it h fam ily and friends, t hree aspect s can be highlight ed, as follows:
- The percept ion t hat t he fam ily has j oined aft er t he disease: The fam ily started to get a little closer. They started to pay m ore attention to m y things. So, I guess it is… well, good,
beneficial, because it is som ething that… if it weren’t the disease,
m aybe I ’d have to reprehend them for som ething. ( Álvaro, 50)
- The percept ion t hat friends got dist ant : Many people got away from m e. I n t he beginning it ’d hurt and I ’d cry. I used
to be around lots of people when I got worse. I thought like:
Wow! Now that I can’t work anym ore people will com e and see
m e, they’ll call to know about m e. And that didn’t happen. So, in
the beginning it surprised m e a lot. Then, I understood that each
person reacts in a different way and who ended up by m y side
were people I really was closer to. ( Neiva, 41)
- The perception that the patient distanced him ( er) self from fam ily and friends: I got m ore ret ired, I don’t want t o get close to people, think they’ll have prej udice, I don’t know. I
ran away, but it’s all in m y head. ( Lícia, 32)
m any of these patients are aware that the procedure is not a prom ise of cure, but an attem pt to interrupt t he pr ogr essiv e cour se of t he disease. They affir m that they will be satisfied if they can achieve this goal. Their report s im plicit ly - and som et im es explicit ly – cont ain t he hope t hat t his innovat ing t reat m ent will be the definitive answer to their problem s: I want a new life! Better quality of life! I f m y hair will grow again or not, it’s up
to destiny. I f I m going to get a big belly or not, it’s up to tim e.
But I ’ll tell you, I ’ll be happy with m y fam ily. I think this is the
least you can do! ( Saulo, 38)
Post BMT I nt erview
Red i m en si o n i n g t h ei r ex p ect at i o n s: Th e analysis of t he post t ransplant at ion int erviews point t o a n i n t e n se i n v o l v e m e n t o f p a t i e n t s i n t h e redim ensioning of t heir own expect at ions wit h regard t o t he pr ocedur e r esult . I n t his per spect iv e, som e sh o w a p e r ce p t i o n o f i m p r o v e m e n t , o t h e r s f e e l fr ust r at ed about t he m aint enance of t heir pr ev ious phy sical condt ion: 1a) I hav e not iced her e in m y legs… Befor e, I didn’t hav e t he st r engt h, I ’d fall. Now I m anage t o
st and! And m y spine also, it had a t endency t o bend, and now
it doesn’t . Only w hen I ’m t oo t ir ed or t he w eat her is t oo hot
( Sor ay a, 4 3 ) ; 1 b) I t ’s difficu lt t o see an y im pr ov em en t ,
y ou k n ow ? Becau se m y leg s st ill h u r t a lot , b u t … I t ’s a
t r eat m ent I didn’t t hink w ould t ak e t his long, y ou k now ? I
w asn’t pr epar ed for t his. ( Silv ana, 42)
Cont inuat ion of lim it at ions: The dependency on others to perform sim ple daily tasks stood out not on ly in t h e p ost BMT in t er v iew s, b u t also in t h e interviews carried out before the transplantation. This was one of t he m ost inconvenient fact ors m ent ioned by t he st udy part icipant s, which is st ill lim it ing t heir lives post BMT: What bot her s m e m ost is t he possibilit y of being a bur den t o ot her s. I t bot her s m e a lot . And people
get t ing t r apped w it h m y pr oblem . I t m ak es m e v er y upset .
( Rob er v al, 5 4 )
Dev ising t he fut ur e: I n r elat ion t o fut ur e ex pect at ions, all pat ient s r epor t t he ex pect at ion of im provem ent. They actually nourished the desire that the treatm ent would really cure them and allow them t o r e su m e t h e i r l i v e s f r o m w h e r e i t h a d b e e n interrupted: I ’m not som eone who wants to be in bed all day, expecting people will feed m e… I ’m not going to try to kill m yself
because of this, but I think I still have potential to do a lot, so…I
t hought it wouldn’t hurt t o lose m ovem ent s, but I was ok t hen.
Now m y m ind is faulting, so let’s start m oving because it’s not
working t his way ( anxious laugh) . ( Silvana, 42)
DI SCUSSI ON
I n g en er al , r et r osp ect i on su g g est s t h ese
pat ient s’ qualit y of life is cont inuously and const ant ly reduced as the disease insidiously progresses. I n this devast at ing scenario, t he t ransplant is present ed as
a her oic possibilit y, so t hat t hey w ould r ecov er not only t heir m ov em ent s but also t he nor m al life t hey h ad lost .
I n su m m ar y, in t h e im m ed iat e p ost BMT, despite the relief they felt for leaving the nursing ward
an d t h e h ospit al en v ir on m en t , t h eir qu alit y of life seem ed t o be harm ed in several aspect s.
I n t h e S F- 3 6 e v a l u a t i o n , d a t a s u g g e s t p at ien t s h av e a p er cep t ion of im p r ov em en t af t er
t he pr ocedur e in r elat ion t o t he capacit y t o per for m d aily t ask s.
I t could be perceived in the data analysis that
pat ient s pr esent ed a good psy chosocial adapt at ion befor e t he disease, t hat t hey had a pr oduct iv e life a n d sa t i sf a ct o r y p e r f o r m e d t h e i r so ci a l r o l e s,
professional activities and daily life. They were m ostly people w it h good or at least av er age cult ur al and
econom ic level, which shows, from the evolutive point of view , t hat t hey w er e aut onom ous, able t o m ake t heir ow n decisions and execut e t asks accor ding t o
what is expect ed from adult people. I n t his cont ext , t h e loss of t h eir h ealt h con d it ion led t o h ar m ed
adapt at iv e capacit y and daily or ganizat ion, coupled to a faulty social support network, leading to feelings of decept ion, anger, denial and frust at ion, which put
people face- t o- face w it h t heir ow n w eak ness in t he face of adv er se ev ent s, w hich t hey cannot cont r ol.
D e sp i t e t h e m a r k i n g d i f f i cu l t i e s ca u se d b y t h e disease, t hey show abilit y t o ov er com e challenges, com m on daily pr eocupat ions caused by t he disease
a n d p r e se r v a t i o n o f a f f e ct i v e i n v o l v e m e n t w i t h f am ily an d f r ien ds.
Th e d i se a se i m p l i e d a b r o a d r a n g e o f sy m pt om s t hat pr ogr essiv ely aggr av at es. I t can be perceived that the m ain com plaints are related to the
loss of physical functioning, which prevents them from ex er t in g t h eir r ou t in es w it h t h e sam e ab ilit y an d
t ask s, t he im possibilit y of cont inuing t o ex er t t heir regular professional act ivit y, exposure t o cont inuous pain an d per ceiv ed ch an ges in t h eir in t er per son al relat ionships are highlight ed.
On t h e ot h er h an d , n ew p ossib ilit ies ar e noticed, as they reflect on the m eaning of their lives, values, beliefs and pr oj ect s. Thus, t he diagnosis of an aut oim m une disease, despit e t he hope for cur e expressed by som e pat ient s, subst ant ially int erferes in their quality of life. I n this study, it appears harm ed, e sp e ci a l l y i n t h e Ph y si ca l Fu n ct i o n i n g a n d Ro l e Lim itations due to Physical Problem s. Differently from what is appointed in literature( 15), in this study, patients
show ed t hem selv es v er y det er m ined r egar ding t he transplantation, always characterizing it as a salvation-t r easalvation-t m en salvation-t an d d i sco n si d er i n g salvation-t h e eq u al l y v i ab l e p ossib ilit y of t h r eat - t r eat m en t . I t can b e d u e t o t h e f act t h at t h ese pat ien t s h av e liv ed w it h t h eir d i se a se s f o r a v e r y l o n g t i m e , h a v e su f f e r e d a con sider able r educt ion in t heir qu alit y of life as a consequence of t he disease pr ogr ession, and hav e a l r e a d y t r i e d s e v e r a l t r e a t m e n t s w i t h n o sat isf act or y r esu lt s. An d esp ecially b ecau se t h ey felt t hey w er e at t he lim it of t heir st r engt h, near ing phy sical and m ent al ex haust ion, w hich m ak es t hem r ev eal t h ey ar e v er y “ t i r ed ” o f f eel i n g so m an y lim it at ions in t heir liv es.
Therefore, t he t ransplant at ion appears as a r ed em p t i v e p o ssi b i l i t y, a h o p e f o r cu r e, an d f o r r ecov er y of t h eir so com p r om ised q u alit y of lif e, corroborat ing wit h findings of som e aut hors( 16), who
appoin t t h at t h is ex pect at ion en cou r ages t h em t o decide in favor of the BMT.
When pat ient s leave t he nursing ward aft er t ransplant at ion, t hey present indices of qualit y of life v er y sim ilar t o t h ose t h ey h ad p r ev iou sly t o t h e surgery, so there is no significant statistical difference between the two phases of the procedure. This result
per se can be seen as posit iv e if w e consider t he BMT’s t r em endous consequences. Never t heless, t he dat a obt ained t hrough int erviews analysis appoint t o a percept ion of im provem ent of Role Lim it at ions due t o Physical Pr oblem s and Physical Funct ioning r ight aft er t he hospit al discharge. The m aj orit y of pat ient s showed renewed disposition to perform daily activities, e v e n a g a i n st m e d i ca l r e co m m e n d a t i o n s, w h i ch in dicat es im pr ov ed em ot ion al st at e. Th u s, despit e f eelin g s of w eak n ess an d f r u st r at ion ex p er ien ced by pat ien t s w it h au t oim m u n e diseases, t h er e is a possibilit y t hat pat ient s w ill feel capable of dealing w it h challenges and ov er com ing adv er se condit ions, seek ing not t o r est r ict t hem selv es t o t he lim it at ions of t h e ch r on ic con dit ion , w h ich is ex per ien ced as f e e l i n g s o f ca p a b i l i t y a n d p o w e r i n t h e f a ce o f life( 17).
A fact t o be considered when one refers t o qualit y of life of t hese pat ient s is t he change in life st yles. Pat ient s recover qualit y of life previous t o t he p r oced u r e, b u t n ot t h e sam e q u alit y of lif e, an d changes like better appreciation of life and search for closer af f ect iv e in t er p er son al r elat ion sh ip s( 1 8 ) ar e com m on. These changes could be v er ified t hr ough interviews, in which the m aj ority appointed their own life as t he m ost precious t hing.
CONCLUSI ONS
I t can be concluded t hat , when applied as a t herapeut ic t echnique for aut oim m une diseases, aft er leaving hospit al, BMT cont ribut es t o a percept ion of im pr ov ed capacit y t o per f or m ev er y day act iv it ies. Pa t i e n t s f e e l e n co u r a g e d b y t h e p o ssi b i l i t y o f r eor ganizing t heir pr ofessional life, r esum ing t heir plans and reliving their dream s interrupted for so long because of t he disease.
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