Revista Brasileira de Enfermagem ISSN: Associação Brasileira de Enfermagem Brasil

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1 Revista Brasileira de Efermagem ISSN: Associação Brasileira de Efermagem Brasil Campos Ribeiro, Claudia; Silveira, Augusta; Silva, Isabel; Ribeiro, Cataria; Gestal, Jua; Vascocelos, Carlos Health related quality of life of chroic patiets with immue system diseases: a pilot study Revista Brasileira de Efermagem, vol. 65, úm. 3, juio, 2012, pp Associação Brasileira de Efermagem Brasília, Brasil Available i: How to cite Complete issue More iformatio about this article Joural's homepage i redalyc.org Scietific Iformatio System Network of Scietific Jourals from Lati America, the Caribbea, Spai ad Portugal No-profit academic project, developed uder the ope access iitiative

2 PESQUISA Health related quality of life of chroic patiets with immue system diseases: a pilot study Qualidade de vida relacioada com a saúde de doetes cróicos com patologias do sistema imue: estudo piloto Calidad de vida relacioada co la salud de pacietes cróicos co efermedades del sistema imue: estudio piloto Claudia Campos Ribeiro I, Augusta Silveira II, Isabel Silva III, Cataria Ribeiro III, Jua Gestal lv, Carlos Vascocelos V I Uiversidade de Medicia Satiago de Compostela (Doutorada). Satiago de Compostela, Espaha. Uiversidade Católica Portuguesa, Cetro Hospitalar do Porto, Hospital Sato Atóio. Porto, Portugal. II Uiversidade Ferado Pessoa, Istituto de Ciêcias Biomédicas Abel Salazar (Doutorada). Porto, Portugal. III Uiversidade Ferado Pessoa. Porto, Portugal. IV Uiversidade de Medicia Satiago de Compostela, Servicio de Medicia Prevetiva y Salud Pública. Satiago de Compostela, Espaha. V Cetro Hospitalar do Porto, Hospital Sato Atóio, Uidade de Imuologia Cliica. Porto, Portugal. Submissão: Aprovação: ABSTRACT Health related quality of life (HRQL) ad survival are two importat outcome measures i chroic diseases. This study aimed to compared HRQL i patiets with differet chroic diseases of immue system ad ormative data from the geeral Portuguese Populatio. It was selected 103 out-patiets, by coveiece, to complete SF-36v2. The lowest scores were foud amog measures for geeral health (41.0), vitality (47.5), bodily pai (51.0), metal health (56.4); wome, except for role-physical, ad patiets with auto-immue diseases have had the worse scores o all assessed dimesio of subjective health, whe compared with ormative data. Highest scores were obtaied i the followig scales: physical fuctioig (69.1), social fuctioig (66.9), role-emotioal (64.9). Livig with chroic immue disease have impact o HRQL ad it ca be expected that the Portuguese versio of SF-36v2 provide valid ad reliable HRQL data. Key words: SF-36v2; Quality of Life; Health related Quality of Life; Chroic Immue Diseases. RESUMO A qualidade de vida relacioada com a saúde (QVRS) e sobrevivêcia são dois desfechos importates as doeças cróicas. Este estudo objetivou comparar a QVRS de pacietes com diferetes patologias cróicas do sistema imue e com os dados ormativos da população Portuguesa. Foram seleccioados 103 pacietes para a amostra por coveiêcia, para completar o SF-32v2. As potuações mais baixas foram ecotradas etre as medidas para a saúde geral (41,0), vitalidade (47,5), dor (51,0) e saúde metal (56,4); as mulheres, exceto a fução física, e os doetes com doeças autoimues obtiveram piores escores em todas as dimesões, quado comparados com os dados ormativos. Os escores mais altos foram obtidos as dimesões: fução física (69,1), fucioameto social (66,9) e fução emocioal (64,9). Viver com doeças cróicas imuológicas apreseta impacto sobre a QVRS e a versão Portuguesa do SF-36v2 forece dados válidos e cofiáveis a mesuração da QdV destes doetes. Descritores: SF-36v2; Qualidade de Vida; Qualidade de Vida relacioada com a Saúde; Doeças Cróicas Imues. RESUMEN Calidad de vida relacioada co la salud (CVRS) y la supervivecia so dos resultados importates e las efermedades cróicas. El objetivo de este estudio fue comparar la calidad de vida relacioada co la salud (CVRS) de los pacietes co diferetes patologías del sistema imuológico y los datos ormativos de la població portuguesa. 103 pacietes fuero seleccioados al acaso para completar el cuestioario SF-32v2. Las más bajas mesuras se ecuetra etre las medidas de salud e geeral (41,0), vitalidad (47,5), dolor (51,0) y salud metal (56,4) que las mujeres e la fució física y los pacietes co efermedades autoimues tambié obtuviero peores putuacioes, e todas las dimesioes e comparació co los datos ormativos. Las putuacioes más altas se obtuviero e las dimesioes: fució física (69,1), fucioamieto social (66,9), fució emocioal (64,9). Vivir co efermedades cróicas imuológicas te u impacto e la CVRS y la versió portuguesa del cuestioario SF 36v2 aporta datos válidos y cofiables para medir la CdV de estos pacietes. Palabras clave: SF-36v2; Calidad de Vida; Calidad de Vida relacioada co la Salud; Efermedades Imuológicas Cróicas. AUTOR CORRESPONDENTE Claudia Campos Ribeiro claudiaribeiro.usc@gmail.com 454 Rev Bras Eferm, Brasília 2012 mai-ju; 65(3):

3 Health related quality of life of chroic patiets with immue system diseases: a pilot study BACKGROUND A patiet s well beig is determied ot oly by his or her health status ad respose treatmet, but also by other social ad psychological dimesios. The idetificatio of factors that determie quality of life (QoL) is importat i order to better tailor health ad social care services, ad thereby improve the fuctioig ad well beig of people livig with chroic pathologies of immue diseases. I additio, the idetificatio of potetially modifiable factors of QoL could help target people i eed of additioal services i order to improve QoL (1). Besides physical ad metal health-related factors, socio-demographic characteristics, such as age, geder, educatio, icome ad employmet status, have foud to be strogly associated with the QoL of people livig with Huma Immuodeficiecy Virus (PLHIV) (2) ad auto-immue diseases (PLAD) like systemic lupus erythematosus (3), scleroderma (4), rheumatoid arthritis (5), Behçet s disease (6) or Sjögre Sydrome (7). Chroic dysfuctio of the immue system, like immuodeficiecy ad self-immuity, ca affect multiple orga systems ad lead to icreased mortality. However, with more effective treatmet (8,), chroic log-term morbidity ad relapse are ow the most sigificat aspects of such diseases. Improved survival with cotiuig morbidity highlights the eed for accurate assessmet of patiets sufferig from these diseases ad their respose to therapy (9). For chroic illesses where there is o cure, it is importat to establish that therapy really makes people feel better. Thus, survival per se is o loger perceived to be the oly ed poit; the goal is to improve, restore, or preserve QoL. I this sese, HRQL measuremet represets a radical realigmet betwee the objective ad subjective elemets of cliical medicie (10). However, each domai of HRQL has may compoets, ad there are a almost ifiite umber of states of health, all with differig qualities, ad all quite idepedet of logevity (11). Moreover, sice expectatios regardig health ad the ability to cope with limitatio ad disability ca greatly affect a perso s perceptio of health ad satisfactio with life, two persos with the same health status may have differet qualities of life. Therefore, the costruct ca be defied i a umber of ways, ad a cosesus of what the term meas has ot bee reached. Thus a challege for cliicias ad researchers has bee to kow their patiets QoL (12). The purpose of this pilot study was to examie QoL amog PLHIV, PLAD ad orms excepted for Portuguese populatio ad to assess the impact of socio-demographic like geder ad age, ad disease related variables like diagosis o QoL i order to facilitate the developmet of treatmet ad decisios made. METHODS Patiet selectio Oe hudred ad three patiets i the study were from Uidade de Imuologia Cliica Hospital Sato Atóio Cetro Hospitalar do Porto. This uit is dedicated to treatmet of patiets with diagosis of immue system diseases, like systemic autoimmue diseases ad primary ad secodary (HIV) immuodeficiecy s. As a criterio for iclusio of patiets it was cosidered the diagosis: ifectio with HIV or autoimmue disease (arthritis rheumatoid, lupus, scleroderma, Behçet disease or Sydrome Sjögre). Exclusio criteria icluded patiets uder age 18 or icomplete medical record data. Procedure The survey was coducted from February 2009 to May The sample uder study was selected by coveiece. Durig medical cosultatio, some patiets followed i this service were approached ad ivited to participate i this research. The patiets were iformed of our itetio to coduct the study. All patiets ivited, have agreed to participate. Patiets aswered to the paper questioaire package, icludig socio-demographic data ad QoL items, after their iformed coset ad before goig to their cliical cosultatio.the study was approved by Hospital Sato Atóio - Cetro Hospitalar do Porto Ethics i Health Committee. Variables The variables aalyzed i this study were obtaied from four thematic sets of questios: HRQL, costituted usig the SF-36v2 ad sets of socioecoomic, demographic ad cliical characteristics. Idepedet variables The idepedet variables of this study were demographic, socioecoomic ad cliical characteristics: geder (male or female), age (<30, 30-50, ad >71), educatio (0-4, 5-12 ad >12 years), marital status (Married, Sigle, Widow, Other), employmet status (employed, studet, retired ad uemployed) ad immue system diseases. Depedet variables The HRQL was measured by the applicatio of the Portuguese versio of SF-36v2, adapted to the Portuguese populatio by Ferreira (13).The SF-36v2 is a updated versio of the SF-36 ad has bee updated to simplify the layout, wordig ad respose formats to miimize cultural bias (14-15). The depedet variables were the scores of the SF-36v2 scales: Physical Fuctioig, Role Emotioal, Role Physical, Pai, Social Fuctioig, Metal Health, Vitality ad Geeral Health. These subscales ca be summarized ito Physical Compoet Summary (PCS) ad Metal Compoet Summary (MCS) scores. The subscales of PF, RP, ad BP cotrib ute to PCS; MH, RE, ad SF cotribute to MCS; while SF, VT, ad GH cotribute to both summary scores (15). All scales are reported as T scores, which correspod to a mea of 50 (14). The scores scales ca rage from 0 to 100, with higher scores reflectig better fuctioig or well-beig. I additio, physical (PCS) ad metal (MCS) compoet summary scores ca be calculated from the SF-36v2 based o a populatio orm-based scorig fuctio (15). Iteral cosistecy reliability of scales scores Differet methods were used to assess reliability icludig iteral cosistecy. The iteral cosistecy was measured Rev Bras Eferm, Brasília 2012 mai-ju; 65(3):

4 Ribeiro CC, et al. by Crobach s alpha (16) coefficiets wish is a measure of the extet to which items i a questioaire are homogeeous (correlated) i supportig the same cocept. A Crobach s α value of.70 or higher was geerally cosidered to be sufficiet to demostrate iteral cosistecy (16). Data Maagemet ad Statistical aalysis Descriptive aalyses were performed for socio-demographic variables, cliical status ad the health domais of SF- -36v2. Descriptive statistics for SF-36v2 are give as mea, stadard deviatio (SD) ad umber of participats. SF-36v2 expected scores were calculated based o the ormative data from the geeral Portuguese populatio aged years that were radomly draw from the Portuguese Populatio Register (= 2459) (16). Iteral cosistecy reliability of multi-item scale was assessed by Crobach s α coefficiet (16). A value of.70 or greater was cosidered as adequate for the purposes of group comparisos. All SF-36v2 scale scores were trasformed liearly to a scale from 0 to 100, with o ad 100 represetig the least ad most favorable health outcomes respectively. Data were aalyzed usig SPSS versio16.0. RESULTS A total of 103 participats were iterviewed: 66 wome ad 37 me, with a mea age of years with a stadard deviatio Regardig the marital status, 50.48% of the idividuals are married, 20.38% are sigle, 8.73% are widow ad 20.38% have other marital status. About 48 are employed ad 72.80% had less tha five years of schoolig. Accordig to the diagosis, 70.87% had autoimmue disease ad 29.13% was ifected by HIV. Table 1 summarizes the mai characteristics of the sample studied. Scores of QoL were lowest i the followig dimesios: geeral health (41.0), vitality (47.5), bodily pai (51.0) ad metal health (56.4). Highest scores were obtaied i the followig scales: physical fuctioig (69.1), social fuctioig (66.9), role-emotioal (64.9) (Table2). Wome obtaied lower scores tha me i all domais except for role-physical (Table3). The greatest differece betwee geders was foud i the vitality, with a differece of 12.3 poits betwee mea scores. Accordig the diagoses revealed that PLAD obtaied lower scores i all dimesio tha PLHIV (Table4). The greatest differece betwee PLAD ad PLHIV was foud i bodily pai with a differece of 21.6 poits betwee mea scores. Comparisos with the expected scores of the geeral populatio Table 4 shows the SF-36v2 health status scores amog patiets with chroic immue diseases compared to the Portuguese orms scores. PLHIV ad PLAD had worse crude scores for all dimesios of health compared with ormative data. SF-36V2 HEALTH STATUS DOMAINS Table 1 - Socio-demographic ad cliical variables of the sample (=103). Sample characteristics accordig to demographic, socioecoomic ad cliical variables. N % GENDER Female Male AGE X(SD) 45,28(15,327) < > EDUCATION YEARS > MARITAL STATUS Married Sigle Widow Other EMPLOYMENT STATUS Employed Studet Retired Uemployed DIAGNOSIS PIHIV PLAD LENGTH OF DISEASE X (SD) 7,01 (6,935) SYSTEMS/ ORGANS AFFECTED Immuological Ski 48 40,7% Osteoarticular 32 27,1 Hematological 10 8,5 Gastroitestial 9 7,6 Real 6 5,1 Pulmoary 4 3,4 Cardiac 4 3,4 Others 5 4,2 Table 2 - Mea scores of SF-36v2 scales total sample. (Total sample) MEAN SD 95%CI Std. ERROR PHYSICAL FUNCTIONING ROLE-PHYSICAL BODILY PAIN GENERAL HEALTH VITALITY ROLE-EMOTIONAL SOCIAL FUNCTIONING MENTAL HEALTH Rev Bras Eferm, Brasília 2012 mai-ju; 65(3):

5 Health related quality of life of chroic patiets with immue system diseases: a pilot study Table 3 - Mea scores SF-36v2 scales accordig to geder ad diagoses. SF-36v2 Variables N=103 Mea Std. Deviatio Physical Fuctioig Physical Problem Pai Geeral Health Vitality Social Fuctio Emotioal Problems Metal health Physical Fuctio Physical Problems Pai Geeral Health Vitality Social Fuctio Emotioal Problems Metal health Geder Mi 95%CI Máx Std Error Female Male Female Male Female Male Female Male Female Male Female Male Female Male Female Male Diagoses PLHIV 30 76,074 23, PLAD 73 65,257 23, PLHIV 30 69,375 29, PLAD 73 57,934 28, PLHIV 30 66,433 26, PLAD 73 44,863 28, PLHIV 30 46,667 19, PLAD 73 39,397 22, PLHIV 30 56,667 23, PLAD 73 43,579 24, PLHIV 30 70,833 28, PLAD 73 65,411 27, PLHIV 30 65,833 30, PLAD 73 64,041 29, PLHIV 30 59,167 22, PLAD 73 55,480 25, Table 4 - Health status patiets with chroic disease versus Portuguese orms scores SF-36v2 Health status domais (Total sample) 103 MEAN SD 95%CI (Geeral populatio) 2459 (Total sample) (Geeral populatio) (Total sample) (Geeral populatio) Physical Fuctio Physical Problems Pai Geeral Health Vitality Social Fuctio Emotioal Problems Metal Health *The Portuguese orms SF-36v2 ad dimesios scores of health status perceptio from patiets with chroic immue diseases: meas ad stadard deviatios. Rev Bras Eferm, Brasília 2012 mai-ju; 65(3):

6 Ribeiro CC, et al. Table 5 - Crobach s α for the SF-36v2. Reliability Correlatio Dimesio Number of items Split-half reliability Crobach s alfa Correlatios betwee dimesios ad items iside Correlatios betwee dimesios ad items outside Physical Fuctio Physical Problems Pai Geeral Health Vitality Social Fuctio Emotioal Problems Metal Health Iteral cosistecy reliability Crobach s Alpha was.944 at baselie ad item correlatio raged from.940 to.949 (SF dimesio with.777 ad the BP dimesio.917) (Table5). These data provide evidece of the iteral cosistecy of the scale. DISCUSSION Quality of life is a study area that has attracted icreasig iterests over the past two decades ad SF-36v2 has bee used as a istrumet for assessig QoL worldwide. Normative data have also bee obtaied i may coutries. I Portugal, SF-36v2 has bee used i a few surveys to assess the quality of life of geeral populatio ad the populatio with special chroic diseases (16). Summary scores ca be used to miimize problems with multiple comparisos. Poor (low) scores o the PCS idicate limitatios i physical/role fuctios, bodily pai, ad geeral health, while better (higher) scores suggest o physical limitatios, disabilities, or decremets i well-beig. I like maer, a low score o the MCS suggests frequet limitatios i psychosocial health, emotioal problems, ad reduced vitality (a fatigue costruct), while a high score idicates frequet positive affect ad vitality, absece of psychological distress, ad reduced or o limitatios i daily social ad role activities (15). I this preset study amog the eight dimesios assessed by the SF-36v2, the populatio studied i the preset survey obtaied worst scores i the scales geeral health, vitality, bodily pai ad metal health. There were also differeces i health status betwee the subgroups ad the expected scores of the geeral populatio, ad differeces betwee the groups accordig to cliical diagosis. PLAD had sigificatly reduced scores tha PLHIV. This ca be due to the ature of the diseases, were autoimmue diseases will have more maifestatios of physical symptoms that are more proe to affect especially physical health domais, whereas havig ifected by HIV may cause more worries ad distress because there might be more ucertaities aroud symptoms, maagemet of disease, potetially affectig more psychological measures. Aalyzig HRQL accordig to geder, this study showed that wome were i worse situatio tha me i all SF-36v2 scales except i role-physical. Similar results were foud i other studies (18-19). The fact that wome exhibit a worse self-assessed level of health may be attributed to the greater perceptio ad kowledge that have regardig diseases ad symptoms (20). The role as a family health caregiver makes wome dedicate more attetio to the sigs of diseases. Studies geerally demostrate a greater prevalece of reported illess ad use of healthcare services amog wome i compariso to me (20). The demographic chages occurrig i the coutry, with a growig umber of patiets with chroic illesses, stressed the eed to assess ad to moitor differet health dimesios i order to guide specific itervetios (20). Measures of HR- QoL are especially required from the perspective of promotig active ageig that foresees the iclusio of the chroic patiets i social cotexts, with autoomy ad idepedece i their activities, as well as actively cotributig i commuity. Crocbach s alpha was used to determie whether the items withi the scaled questioaires had the same degree of associatio i the mode of admiistratio at the baselie assessmet. The iteral cosistecy reliability of the SF-36v2 scales was satisfactory. Our data demostrate SF-36v2 ca be used to assess HRQL i patiets with differet chroic immue diseases. I additio, this study had limitatios that should be oted. First our sample was relatively small. Secod, the questioaire required self-completio. This could be possibly had a egative effect o the respose rate, particularly i illiterate idividuals whose literacy rates ted to be lower. For last, compared diseases so differet it uusually but the ultimate goal, will be i the future measured HRQL i practice daily routie i Uidade de Imuologia Cliica Hospital Sato Atóio Cetro Hospitalar do Porto, resposible to cosult patiets with affectios of immue system. CONCLUSION I coclusio, livig with chroic immue diseases is most likely to health status vulerability. I geeral, persos with 458 Rev Bras Eferm, Brasília 2012 mai-ju; 65(3):

7 Health related quality of life of chroic patiets with immue system diseases: a pilot study chroic immue diseases perceive their curret health; health outlook ad resistace to illess to be lower tha geeral populatio, ad for these patiets physical health ad metal health ca i additio limit ad iterfere with work or daily activities. This data cotributes to the iput eeded for plaig health care service ad itervetio that address QoL improvemet for PLHIV ad PLAD. The availability of HR-QOL score immediately durig the cosultatio could cotribute to patiet cetered care, help to focus the patiet-physicia cosultatio, supportig the defiitio of therapeutic goals as well as the evaluatio of their achievemet, ad provides stadardized data, which ca be compared itra- ad iter- idividually. BIBLIOGRAPHY 1. McDoell KA, Giele AC, O Campo P, Burke JG: Abuse, HIV status ad health-related quality of life amog a sample of HIV positive ad HIV egative low icome wome. Qual Life Res 2005;14: Murri R, Fatoi M, Del Borgo C, Visoa R, Barracco A, Zambelli A, Testa L, Orchi N, Tozzi V, Bosco O, Wu AW: Determiats of health-related quality of life i HIV-ifected patiets. AIDS Care 2003; 15(4): Paopalis P, Petri M, Mazi S, et al. The systemic lupus erythematosus tri-atio study: logitudial chages i physical ad metal well-beig. Rheumatol 2005;44: Daieli E, Paolo A, Lorezo B, Ciquii M, Atoioli CM, Cavazzaa I, Fraceschii RC. Health-related quality of life measured be the Short Form 36 (S-36) i systemic sclerosis: correlatios with idexes of disease activity ad severity, disability, ad depressive symptoms. Cli Rheumatol 2005;24: Strombeck B, Ekdahl C, Mathorpe R, Wikstrom I, Jacobsso LT. Health-related quality of life i primary Sjogre s sydrome, rheumatoid arthritis ad fibromyalgia compared to ormal populatio data usig the SF-36. Scad J Rheumatol 2000;29: Ertam I, Kitapcioglu G, Aksu K, Keser G, Ozaksar A, Elbi H, Ual I, Alper S. Quality of life ad its relatio with disease severity i Behçet s disease. Cli Exp Rheumatol 2009;27(2 Suppl 53):S Rostro J, Rogers S, Logma L, Kaey S, Field EA. Healthrelated quality of life i patiets with Primary Sjogre s Sydrome ad xerostomia: a comparative study. Gerotol 2002;19: Emery P. Systemic lupus erythematosus. I: Butler RC, Jayso MIV, editors. Collected reports o the rheumatic diseases. Arthritis Res Campaig 1998: Baco PA, Moots RJ, Exley A, Luqmai R, Rasmusse N. VITAL (Vasculitis Itegrated Assessmet Log) assessmet of vasculitis. Cli Exp Rheumatol 1995:13: Sulliva M. The ew subjective medicie: takig the patiet s poit of view o health care ad health. Soc Sci Med 2003;56: Testa MA, Simoso DC. Assesmet of quality-of-life outcomes. N Egl J Med.1996;334: Okamoto T, Shimozuma K, Katsumata N, Koike M, Hisashige A, et al. Measurig quality of life i patiets with breast cacer: a systematic review of reliable ad valid istrumets available i Japa. Breast Cacer 2003;10: Ferreira, P. Criação da versão portuguesa do MOS SF-36 Parte I- adaptação cultural e liguística. Acta Med Port 2000;13: Hawthore G, Osbore RH, Taylor A, Sasoi J. The SF36 Versio 2: critical aalyses of populatio weights, scorig algorithms ad populatio orms. Qual Life Res 2007;16: Ware JE, Kosiski M, Dewey JE. How to score versio 2 of the SF-3 6 health survey (stadard ad acute forms). Licol: QualityMetric Icorporated; Crobach, L. J. Essetials Of Psychological Testig. New York: Harper Collis Publishers; Ferreira P.L., Sataa, P. Percepção de estado de saúde e de qualidade de vida da população activa : cotributo para a defiição de ormas portuguesas. Rev Port Saúde Pública 2003;21: Ribeiro C. Qualidade de Vida dos doetes do Serviço de Imuologia Clíica do Cetro Hospitalar do Porto, Hospital Geral de Sato Atóio. I: Trabalho de Ivestigação Tutelado; Dachs JNW, Satos APR. Auto-avaliação do estado de saúde o Brasil: aálise dos dados da PNAD/2003. Ciêc Saúde Coletiva 2006;11: Barros MBA, César CLG, Caradia L, Torre GD. Desigualdades sociais a prevalêcia de doeças crôicas o Brasil, PNAD Ciêc Saúde Coletiva 2006;11: Rev Bras Eferm, Brasília 2012 mai-ju; 65(3):