Abstracts
Purpose
To investigate and to compare quality of life (QOL) in fluent and non-fluent aphasics.
Methods
This is a prospective, quantitative, and transversal study. We included 11 stroke patients with aphasia (five non-fluent aphasics augmentative and alternative communication users and six fluent aphasics). Data was gathered from the Stroke Specific Quality of Life Scale (SS-QOL), a structure interview, and The Modified Rankin Scale.
Results
The non-fluent aphasics presented poorer Rankin and quality of life than the fluent aphasics. The major difference occurred in the fields of language and upper extremity function. The three most affected domains in non-fluent aphasics were language, social roles, and thinking, whereas in the fluent aphasics were personality, social roles, and thinking. All the subjects referred a worse quality of life after stroke. The domains of language and self-care were identified as the most affected after stroke.
Conclusion
This study demonstrated that, in general, non-fluent aphasics have lower quality of life than fluent aphasics. However, this difference is not homogeneous among the several quality of life domains. Additionally, this research evidences a relationship between aphasia severity and individual functionality, implying impairment in quality of life, especially for non-fluent aphasics.
Aphasia; Quality of life; Stroke; Communication aids for disabled; Language
Objetivo
Investigar e comparar a qualidade de vida de afásicos fluentes e não fluentes.
Métodos
Trata-se de pesquisa prospectiva, quantitativa, transversal, cuja amostra se constituiu de 11 sujeitos afásicos (5 não fluentes, usuários de comunicação suplementar e/ou alternativa e 6 fluentes, não usuários de comunicação suplementar e/ou alternativa. A coleta de dados foi realizada por meio da aplicação de um questionário específico de qualidade de vida, entrevista estruturada e aplicação da escala de Rankin modificada.
Resultados
Na comparação dos grupos estudados, os afásicos não fluentes apresentaram escores de Rankin e de qualidade de vida menores do que os fluentes e as maiores diferenças referiram-se aos domínios de linguagem e função do membro superior. Os domínios mais prejudicados pelo acidente vascular cerebral foram linguagem, relações sociais e modo de pensar, para os afásicos não fluentes, e comportamento, relações sociais e modo de pensar, para os fluentes. Todos os sujeitos relataram que sua qualidade de vida piorou após o acidente vascular cerebral, sendo que linguagem e cuidados pessoais foram apontados como os aspectos que mais mudaram, após o episódio lesional.
Conclusão
Os achados mostram relação entre gravidade da afasia e funcionalidade do indivíduo, indicando que, no geral, os afásicos não fluentes apresentam qualidade de vida pior do que os fluentes. As diferenças não são homogêneas nos diversos domínios de qualidade de vida.
Afasia; Qualidade de vida; Acidente vascular cerebral; Auxiliares de comunicação para pessoas com deficiência; Linguagem
INTRODUCTION
Many are the factors which can cause damage to the quality of life (QOL) of
individuals. In this study, aphasia is the focus, with a view to contribute to
expand the knowledge in this area, due to the scarcity of studies, mainly in the
literature about Speech-Language Pathology, and also due to its importance in
several aspects in the life of individuals, for example, the dependence on a
caretaker for daily activities, the disruption of social relations, language
impairment, psycho-affective changes, such as depression, isolation, among
others(11 . Universidade Estadual de Campinas, Instituto da Linguagem. Sobre
as afasias e os afásicos: subsídios teóricos e práticos elaborados pelo Centro
de Convivência de Afásicos (Universidade Estadual de Campinas). Campinas:
Editora Unicamp; 2002.
2 . Cordini LK, Oda EY, Furlanetto LM. Qualidade de vida de pacientes
com história prévia de acidente vascular encefálico: observação de casos. J Bras
Psiquiatr. 2005;54(4):312-17.
3 . Worrall L, Holland A. Quality of life in aphasia. Aphasiology.
2003;17(4):329-32.-44 . Hilari K, Byng S. Health-related quality of life in people with
severe aphasia. Int J Lang Comm Dis. 2009;44(2):193-205.
http://dx.doi.org/10.1080/13682820802008820
https://doi.org/10.1080/1368282080200882...
).
As for these aspects, it is worth remembering the notions of QOL in health issues,
since it has been through various changes throughout the last decades. It has been
noticed an increasing interest by QOL in the health area, mainly after the changes
related to the comprehension of the determining aspects of the health-illness
condition, and the establishment and implementation of the principles and targets of
Health Promotion. QOL has polysemic notions, in that “it comprehends many different
meanings, which reflect the knowledge, experiences, and individuals and collective
values of different times, space, and history, being, this way, a social
construction with indistinctive cultural aspects”(55 . Minayo MCS, Hartz ZMA, Buss PM. Qualidade de vida e saúde: um
debate necessário. Ciênc Saúde Coletiva. 2000;5(1):7-18.
http://dx.doi.org/10.1590/S1413-81232000000100002
https://doi.org/10.1590/S1413-8123200000...
).
Health Promotion, as defined in The Ottawa Charter for Health Promotion in 1986, is
the “capability process of the community to improve their quality of life and
health”, and contains a number of factors which promote people’s well-being and
desirable life conditions, such as food, education, leisure, and work. Consequently,
involved professionals should act aiming at humanizing practices and thus assure the
individual well-being(66 . Seidt EMF, Zannon CMLC. Qualidade de vida e saúde: aspectos
conceituais e metodológicos. Cad Saúde Pública. 2004; 20(2):580-8.
http://dx.doi.org/10.1590/S0102-311X2004000200027
https://doi.org/10.1590/S0102-311X200400...
).
In this context, the QOL is understood as a differentiating factor in health
assistance leading to the completeness, and development of therapeutic
practices(66 . Seidt EMF, Zannon CMLC. Qualidade de vida e saúde: aspectos
conceituais e metodológicos. Cad Saúde Pública. 2004; 20(2):580-8.
http://dx.doi.org/10.1590/S0102-311X2004000200027
https://doi.org/10.1590/S0102-311X200400...
). Various authors(55 . Minayo MCS, Hartz ZMA, Buss PM. Qualidade de vida e saúde: um
debate necessário. Ciênc Saúde Coletiva. 2000;5(1):7-18.
http://dx.doi.org/10.1590/S1413-81232000000100002
https://doi.org/10.1590/S1413-8123200000...
6 . Seidt EMF, Zannon CMLC. Qualidade de vida e saúde: aspectos
conceituais e metodológicos. Cad Saúde Pública. 2004; 20(2):580-8.
http://dx.doi.org/10.1590/S0102-311X2004000200027
https://doi.org/10.1590/S0102-311X200400...
-77 . Carod-Artal FJ. Determining quality of life in stroke survivors.
Expert Rev Pharmacoecon Outcomes Res. 2012;12(2):199-211.
http://dx.doi.org/10.1586/erp.11.104
https://doi.org/10.1586/erp.11.104...
) discuss the importance in considering
QOL under subjective aspects, observing how individuals assess their personal
situation, and the different domains the QOL may have, which include social
relations, family relations, language, behavior, among other aspects addressed in
QOL questionnaires.
Therefore, the QOL is understood as the personal satisfaction in accomplishing their
daily activities, personal relation, including romantic, family, and social
relations, in living under satisfactory conditions, comprising sanitation, housing,
transportation, and food, as well as having access to education, health, and
leisure(55 . Minayo MCS, Hartz ZMA, Buss PM. Qualidade de vida e saúde: um
debate necessário. Ciênc Saúde Coletiva. 2000;5(1):7-18.
http://dx.doi.org/10.1590/S1413-81232000000100002
https://doi.org/10.1590/S1413-8123200000...
6 . Seidt EMF, Zannon CMLC. Qualidade de vida e saúde: aspectos
conceituais e metodológicos. Cad Saúde Pública. 2004; 20(2):580-8.
http://dx.doi.org/10.1590/S0102-311X2004000200027
https://doi.org/10.1590/S0102-311X200400...
-77 . Carod-Artal FJ. Determining quality of life in stroke survivors.
Expert Rev Pharmacoecon Outcomes Res. 2012;12(2):199-211.
http://dx.doi.org/10.1586/erp.11.104
https://doi.org/10.1586/erp.11.104...
).
This QOL concept enlarges the numbers of possibilities for health assistance, and
consolidates new paradigms of the health-illness process, which favors Health
Promotion, and prevents new diseases(55 . Minayo MCS, Hartz ZMA, Buss PM. Qualidade de vida e saúde: um
debate necessário. Ciênc Saúde Coletiva. 2000;5(1):7-18.
http://dx.doi.org/10.1590/S1413-81232000000100002
https://doi.org/10.1590/S1413-8123200000...
,66 . Seidt EMF, Zannon CMLC. Qualidade de vida e saúde: aspectos
conceituais e metodológicos. Cad Saúde Pública. 2004; 20(2):580-8.
http://dx.doi.org/10.1590/S0102-311X2004000200027
https://doi.org/10.1590/S0102-311X200400...
).
Several questionnaires were devised to measure the QOL in the health area. In our
study, we used a specific questionnaire for cerebrovascular diseases - The Stroke
Specific Quality of Life Scale (SS-QOL)(88 . Williams LS, Wienberger M, Harris LE, Clark DO, Biller J.
Development of a stroke-specific quality of life scale. Stroke.
1999;30(7):1362-69. http://dx.doi.org/10.1161/01.STR.30.7.1362
https://doi.org/10.1161/01.STR.30.7.1362...
) - translated and validated to
Portuguese(99 . Santos AS. Validação da escala de avaliação da qualidade de vida
na doença cerebrovascular isquêmica para a língua portuguesa [doctor’s thesis].
São Paulo: Faculdade de Medicina da Universidade de São Paulo;
2007.)*
*
The protocol validation in Portuguese did not involve patients with
linguistic-cognitive impairment.
. The
questionnaires for base population, which do not specify a pathology, are used for
epidemiological research and the health system evaluation(55 . Minayo MCS, Hartz ZMA, Buss PM. Qualidade de vida e saúde: um
debate necessário. Ciênc Saúde Coletiva. 2000;5(1):7-18.
http://dx.doi.org/10.1590/S1413-81232000000100002
https://doi.org/10.1590/S1413-8123200000...
). On the other hand,
more specific questionnaires can indicate alterations in the QOL of determined
groups of individuals more easily(99 . Santos AS. Validação da escala de avaliação da qualidade de vida
na doença cerebrovascular isquêmica para a língua portuguesa [doctor’s thesis].
São Paulo: Faculdade de Medicina da Universidade de São Paulo;
2007.), for example, in stroke
sequels(77 . Carod-Artal FJ. Determining quality of life in stroke survivors.
Expert Rev Pharmacoecon Outcomes Res. 2012;12(2):199-211.
http://dx.doi.org/10.1586/erp.11.104
https://doi.org/10.1586/erp.11.104...
8 . Williams LS, Wienberger M, Harris LE, Clark DO, Biller J.
Development of a stroke-specific quality of life scale. Stroke.
1999;30(7):1362-69. http://dx.doi.org/10.1161/01.STR.30.7.1362
https://doi.org/10.1161/01.STR.30.7.1362...
9 . Santos AS. Validação da escala de avaliação da qualidade de vida
na doença cerebrovascular isquêmica para a língua portuguesa [doctor’s thesis].
São Paulo: Faculdade de Medicina da Universidade de São Paulo;
2007.-1010 . Williams LS, Wienberger M, Harris LE, Biller J. Measuring quality
of life in a way that is meaningful to stroke patients. Neurology.
1999;53(8):1838-43.). For this reason, in this study we used a
specific questionnaire to measure the QOL of stroke patients, mainly the
aphasics.
The aphasia, here defined as an alteration in the comprehension and/or language
production, is caused by brain damage resulting from, chiefly, a stroke. This
condition can result in a negative impact on the person’s life, since, besides
affecting language, it may interfere in the related processes as practical life,
social, affective, interactive, and interpretative relations(11 . Universidade Estadual de Campinas, Instituto da Linguagem. Sobre
as afasias e os afásicos: subsídios teóricos e práticos elaborados pelo Centro
de Convivência de Afásicos (Universidade Estadual de Campinas). Campinas:
Editora Unicamp; 2002.,33 . Worrall L, Holland A. Quality of life in aphasia. Aphasiology.
2003;17(4):329-32.,44 . Hilari K, Byng S. Health-related quality of life in people with
severe aphasia. Int J Lang Comm Dis. 2009;44(2):193-205.
http://dx.doi.org/10.1080/13682820802008820
https://doi.org/10.1080/1368282080200882...
). Thus, it is of the almost importance to
investigate the aspects of aphasics QOL.
Taking into consideration that difficulties in communication are among the aphasic
patient’s most common complaints, it is important that, during aphasic clinical
follow-up procedures, the conditions under which language produced is examined,
verbal and non-verbal, analyzing dialogues, and spontaneous narratives, in other
words, contextualized actions considering the social subject as an active
participant of their own language reconstruction, to increase their
QOL(1111 . Galli JFM, Oliveira JP, Deliberato D. Introdução da comunicação
suplementar e alternativa na terapia com afásicos. Rev Soc Bras Fonoaudiol.
2009;14(3):402-10.
http://dx.doi.org/10.1590/S1516-80342009000300018
https://doi.org/10.1590/S1516-8034200900...
12 . Chun RYS. Processos de significação de afásicos usuários de
comunicação sumplementar e/ou alternativa. Rev Soc Bras Fonoaudiol.
2010;15(4):598-603.
http://dx.doi.org/10.1590/S1516-80342010000400021
https://doi.org/10.1590/S1516-8034201000...
-1313 . Bahia MM, Chun RYS. Augmentative and alternative communication
repercussion on non-fluent aphasia. Rev CEFAC. 2014;16(1):147-60.
http://dx.doi.org/10.1590/1982-021620146612
https://doi.org/10.1590/1982-02162014661...
). Thus, the search of better understanding and
the inter-relation of life conditions, one of the factors that interfere in the
aphasic subject’s language, are of extreme relevance.
In the literature, however, not many studies about aphasics QOL can be found, mainly
due to difficulties on the part of the interviewers in dealing with
linguistic-cognitive impairments, and also difficulties on the part of the patients
in understanding and expressing themselves in a satisfactory way to convey their
actual QOL(33 . Worrall L, Holland A. Quality of life in aphasia. Aphasiology.
2003;17(4):329-32.,44 . Hilari K, Byng S. Health-related quality of life in people with
severe aphasia. Int J Lang Comm Dis. 2009;44(2):193-205.
http://dx.doi.org/10.1080/13682820802008820
https://doi.org/10.1080/1368282080200882...
,1414 . Hilari K e Byng S. Measuring quality of life in people with
aphasia: the Stroke Specific Quality of Life Scale. Int J Lang Commun Disord.
2001;36 suppl 1:86-91.
http://dx.doi.org/10.3109/13682820109177864
https://doi.org/10.3109/1368282010917786...
,1515 . Cruice M, Worrall L. Hickson L. Health-related quality of life in
people with aphasia: implications for fluency disorders quality of life
research. J Fluency Disord. 2010;35(3):173-89.
http://dx.doi.org/10.1016/j.jfludis.2010.05.008
https://doi.org/10.1016/j.jfludis.2010.0...
). For this reason, some
authors(33 . Worrall L, Holland A. Quality of life in aphasia. Aphasiology.
2003;17(4):329-32.,1414 . Hilari K e Byng S. Measuring quality of life in people with
aphasia: the Stroke Specific Quality of Life Scale. Int J Lang Commun Disord.
2001;36 suppl 1:86-91.
http://dx.doi.org/10.3109/13682820109177864
https://doi.org/10.3109/1368282010917786...
) point out the need to adapt the QOL
questionnaires to favor the participation of the aphasics, by, for example,
simplifying the questions and using pictures.
In this context, the Augmentative and Alternative Communication (ACC) appears as a
possibility to improve aphasics clinical follow-up(1111 . Galli JFM, Oliveira JP, Deliberato D. Introdução da comunicação
suplementar e alternativa na terapia com afásicos. Rev Soc Bras Fonoaudiol.
2009;14(3):402-10.
http://dx.doi.org/10.1590/S1516-80342009000300018
https://doi.org/10.1590/S1516-8034200900...
12 . Chun RYS. Processos de significação de afásicos usuários de
comunicação sumplementar e/ou alternativa. Rev Soc Bras Fonoaudiol.
2010;15(4):598-603.
http://dx.doi.org/10.1590/S1516-80342010000400021
https://doi.org/10.1590/S1516-8034201000...
-1313 . Bahia MM, Chun RYS. Augmentative and alternative communication
repercussion on non-fluent aphasia. Rev CEFAC. 2014;16(1):147-60.
http://dx.doi.org/10.1590/1982-021620146612
https://doi.org/10.1590/1982-02162014661...
,1616 . Johnson RK, Hough MS, King KA, Vos P, Jeffs T. Functional
communication in individuals with chronic severe aphasia using augmentative
communication. Augment Altern Commun. 2008;24(4):269-80.
http://dx.doi.org/10.1080/07434610802463957
https://doi.org/10.1080/0743461080246395...
), mainly in situations in which no advances
in clinical therapy are present, or when the advances are poor in order to allow the
assessment of the language evolution(1717 . Couto EAB. Utilização dos sistemas aumentativos e alternativos de
comunicação na reabilitação das afasias. In: Almirall CB, Soro-Camats E, Bultó
CR. Sistemas de sinais e ajudas técnicas para a comunicação alternativa e a
escrita. São Paulo: Santos; 2003. p.
231-41.).
The AAC can contribute to benefit the language of people with verbal communication
disorder, as it occurs with aphasics, bringing, as a consequence, bad results in
their QOL. Thus, the AAC is an important Speech-Language Pathology resource in
aphasia(1111 . Galli JFM, Oliveira JP, Deliberato D. Introdução da comunicação
suplementar e alternativa na terapia com afásicos. Rev Soc Bras Fonoaudiol.
2009;14(3):402-10.
http://dx.doi.org/10.1590/S1516-80342009000300018
https://doi.org/10.1590/S1516-8034200900...
12 . Chun RYS. Processos de significação de afásicos usuários de
comunicação sumplementar e/ou alternativa. Rev Soc Bras Fonoaudiol.
2010;15(4):598-603.
http://dx.doi.org/10.1590/S1516-80342010000400021
https://doi.org/10.1590/S1516-8034201000...
-1313 . Bahia MM, Chun RYS. Augmentative and alternative communication
repercussion on non-fluent aphasia. Rev CEFAC. 2014;16(1):147-60.
http://dx.doi.org/10.1590/1982-021620146612
https://doi.org/10.1590/1982-02162014661...
), bearing in mind that “the aphasic patient’s
quality of life is closely related to the intensity of the aphasia impact upon
them”(11 . Universidade Estadual de Campinas, Instituto da Linguagem. Sobre
as afasias e os afásicos: subsídios teóricos e práticos elaborados pelo Centro
de Convivência de Afásicos (Universidade Estadual de Campinas). Campinas:
Editora Unicamp; 2002.).
Hence, the AAC is an auxiliary aid to help aphasic subjects to deal with their life
conditions, when performing a dialog, as when responding QOL questionnaire.
In view of what has been said here, the purpose of the present study is to investigate and to compare fluent and non-fluent aphasics AAC users.
METHODS
This is a prospective, quantitative, and transversal study. We included 11 stroke patients with aphasia, participants of the Aphasia Center – Institute of Language Studies, Faculty of Medical Sciences, Universidade Estadual de Campinas.
The sample was composed of individual with ischemic or hemorrhagic stroke diagnosis, and with expressive aphasia. We excluded aphasia patients with important comprehension difficulties, for this would make the application of the QOL questionnaire impossible.
All the Aphasia Center participants are evaluated by the people in charge of this Center, at the time of their entry in the groups, when the aphasia diagnosis is defined, and their participation in the Aphasia Center is determined.
According to the language characteristics, contained in the reports of speech-language therapy, the study participants were divided into two groups: five non-fluent aphasics AAC users – NF group – who also participated in the speech-language therapy with resources of AAC, and six fluent aphasics – F group – non AAC users.
Aphasia has different classifications and, in this research, we do not follow a neuropsychological model, in which reduced verbal expression aphasia and verbal expression fluid aphasia are grouped. According to linguistic criteria, we used the terminology “non-fluent aphasics” to refer to those patients whose language production were fragmented phrases, reduced oral expression, difficulty in producing words, paraphasias, perseverations, verbal stereotypes, prolonged sounds, and other language deficits(1818 . Fedosse E. Acompanhamento fonoaudiológico de um sujeito afásico não-fluente: continuidade sonsório-motora. Distúrb Comun. 2007;19(3):403-14.). Fluent aphasics also presented expression aphasia without comprehension difficulties, more fluid oral expression, with ability to form simple and meaningful phases, requiring little help, but with some difficulty in production of words.
The data were gathered in three different ways:
-
a) application of the Stroke Specific Quality of Life Scale – SS-QOL, translated and validated to Portuguese(99 . Santos AS. Validação da escala de avaliação da qualidade de vida na doença cerebrovascular isquêmica para a língua portuguesa [doctor’s thesis]. São Paulo: Faculdade de Medicina da Universidade de São Paulo; 2007.);
-
b) structured interview;
-
c) application of The Modified Rankin Scale(1919 . Bonita R, Beaglehole R. Recovery of motor function after stroke. Stroke. 1988;19(12):1497-500. http://dx.doi.org/10.1161/01.STR.19.12.1497
https://doi.org/10.1161/01.STR.19.12.149... )
This study was approved by the Ethical Committee of the Universidade Estadual de Campinas (UNICAMP) under protocol 124/2008. Informed consent was obtained from every subject or their family.
Stroke Specific Quality of Life Scale (SS-QOL)
The SS-QOL questionnaire enables the analysis of the QOL of subjects. The SS-QOL
comprises 49 items that examine 12 domains, and two parts. The fist part has
questions about the individuals’ difficulties regarding mobility, upper
extremity function, work/productivity, self-care, language, and vision. The
second part, with a subscale of 12 areas, evaluates each domain at the present
moment compared to the period before the stroke: energy, mood, thinking,
personality, social roles, and family roles(88 . Williams LS, Wienberger M, Harris LE, Clark DO, Biller J.
Development of a stroke-specific quality of life scale. Stroke.
1999;30(7):1362-69. http://dx.doi.org/10.1161/01.STR.30.7.1362
https://doi.org/10.1161/01.STR.30.7.1362...
,99 . Santos AS. Validação da escala de avaliação da qualidade de vida
na doença cerebrovascular isquêmica para a língua portuguesa [doctor’s thesis].
São Paulo: Faculdade de Medicina da Universidade de São Paulo;
2007.).
In each of the 49 items, the subject can get 1 to 5 points or no answer if the question does not apply to their life. The analysis is done by each individual domain. The evaluation of self-care, vision, language, mobility, work/productivity, and upper extremity function domains is done by inquiring about the individual’s ability to perform a specific function, and can vary from no help needed/no trouble at all (5) to total help/ could not do it at all (1). The thinking, personality, mood, family roles, social roles, and energy domains refer to the subjects’ opinion about a specific situation, and can vary from strongly disagree (5) to strongly agree (1). The quantification of the answers is set by adding up the points 1 to 5, in which the minimum score is 49, and the maximum 245.
For the QOL description, we considered the domains most affected by stroke which had higher frequency of responses 1 (total help/could not do it at all/strongly agree), and 2 (a lot of help/a lot of trouble/moderately agree). We considered the least affected domains which had higher frequency of responses 5 (no help needed/no trouble at all/strongly disagree).
The SS-QOL questionnaire was applied to each subject separately. The questions were read by one of the researchers, and the subjects answered using their communication resources, such as oral communication, AAC symbols, pointing (Figure 1).
Question examples in the quality of life questionnaire in augmentative and alternative communication
Structured interview
The interview aimed to characterize the patients, including socio-demographic factors (age, gender, work, and occupation), clinical history (date and type of stroke), language characteristics (type of aphasia, time participation in the Aphasia Center, AAC use, main communication difficulties, and forms of communication commonly used), and life conditions (need of a caretaker, daily activities).
The interview was conducted with each subject separately and, in some cases, we needed help from the family/caretaker, especially for remembering dates.
The Modified Rankin Scale (mRs)
This scale assesses the patient’s ability to perform daily activities and the dependence when performing tasks, evaluating the overall capacity and the need for assistance after stroke. The scale goes from 0 to 5, where 0 is perfect health without symptoms, and 5, severe disability.
Statistical analysis
Statistical and quantitative analyses were carried out with SPSS® 15.0 for Windows. Descriptive and dispersion statistics present the characteristics and outcomes of the subjects. The Chi-square test and Mann-Whitney U test were used to compare fluent and non-fluent groups. For the correlation between variables we used the Spearman’s Rank-Order Correlation. We considered a p-value lower than 0.05 as statistically significant, and a confidence interval of 95%.
RESULTS
Regarding the participants characterization, 4 were female, and 7 male, mean age 54 years old (SD=11). In comparing the two groups, NF aphasics and F aphasics, the main differences were gender (p=0.006), and mRs (p=0.0036) (Table 1).
The SS-QOL findings showed aspects of the subjects QOL through the description of each of the 12 domains questionnaire. The results for each group are detailed in Figures 2 and 3.
Measures of the quality of life domains in non-fluent group, augmentative and alternative communication users
Measures of the quality of life domains in fluent group, non augmentative and alternative communication users
In comparing the two groups, the domains “language” (p=0.009) and “upper extremity function” (p=0.021) were different. The NF group of AAC users showed lower scores (Figure 4).
The most affected domains in the NF group were “language” (64%), “social roles” (52%), and “thinking” (46.7%), whereas in the F group they were “personality” (66%), “social roles” (50%), and “thinking” (44.5%) (Table 2)
The least affected domains in the NF group of AAC users were “vision” (86.7%), “family roles” (66.6%), and “energy” (60%). In the F group, they were “vision” (89%), “self-care” (87%), and “mobility” (83%) (Table 3).
The last part of the questionnaire consists of a subscale with 12 domains previously assessed, comparing the subjects impression of their present moment and the period before the stroke. All subjects in for both groups mentioned that their QOL were worse after the brain damage. Regarding the two groups, the domains “language” (p=0.045) and “self-care” (p=0.011) were identified as the most affected after stroke, though the effects were more severe in the NF group.
The correlation between mRs and SS-QOL score was statistically significant (p=0.004; r=-0.783), indicating that lower individual functionality (i.e. higher mRs value) is related to lower QOL.
DISCUSSION
Studies show that the QOL declines after a stroke, even for individuals with minimal
sequel(77 . Carod-Artal FJ. Determining quality of life in stroke survivors.
Expert Rev Pharmacoecon Outcomes Res. 2012;12(2):199-211.
http://dx.doi.org/10.1586/erp.11.104
https://doi.org/10.1586/erp.11.104...
,2020 . Carod-Artal FJ, Trizotto DS, Coral LF, Moreira CM. Determinants of
quality of life in Brazilian stroke survivors. J Neurol Sci. 2009;284(1-2):63-8.
http://dx.doi.org/10.1016/j.jns.2009.04.008
https://doi.org/10.1016/j.jns.2009.04.00...
,2121 . Kauhanen ML, Korpelainen JT, Hiltunen P, Nieminen P, Sotaniemi KA,
Myllylä VV. Domains and determinants of quality of life after stroke caused by
brain infarction. Arch Phys Med Rehabil. 2000;81(12):1541-6.). Among the factors that influence the QOL, we
can mention age, low educational level, mobility difficulties, depression,
difficulties in social roles, and language changes(2222 . Paul SL, Sturm JW, Dewey HM, Donnan GA, Macdonell RAL, Thrift AG.
Long-term outcome in the North East Melbourne Stroke Incidence study: predictors
of quality of life at 5 years after stroke. Stroke. 2005;36(10):2082-6.
http://dx.doi.org/10.1161/01.STR.0000183621.32045.31
https://doi.org/10.1161/01.STR.000018362...
23 . Hilari K, Wiggins R, Roy P, Byng S, Smith S. Predictors of
health-related quality of life (HRQOL) in people with chronic aphasia.
Aphasiology. 2003;17(4):365-81.
http://dx.doi.org/10.1080/02687030244000725
https://doi.org/10.1080/0268703024400072...
-2424 . Singpoo K, Charerntanyarak L, Ngamroop R, Hadee N, Chantachume W,
Lekbunyasin O et al. Factors related to quality of life of stroke survivors. J
Stroke Cerebrovasc Dis. 2012;21(8):776-81.
http://dx.doi.org/10.1016/j.jstrokecerebrovasdis.2011.04.005
https://doi.org/10.1016/j.jstrokecerebro...
).
The sample was mostly formed by adult men, and with independence level varying from
little to moderate (mRs). Studies on post-stroke QOL with Brazilian patients show
greater incidence for men, with mean age slightly above those of our study, much
shorter stroke period, and level of independence compatible with our
research(22 . Cordini LK, Oda EY, Furlanetto LM. Qualidade de vida de pacientes
com história prévia de acidente vascular encefálico: observação de casos. J Bras
Psiquiatr. 2005;54(4):312-17.,99 . Santos AS. Validação da escala de avaliação da qualidade de vida
na doença cerebrovascular isquêmica para a língua portuguesa [doctor’s thesis].
São Paulo: Faculdade de Medicina da Universidade de São Paulo;
2007.,2020 . Carod-Artal FJ, Trizotto DS, Coral LF, Moreira CM. Determinants of
quality of life in Brazilian stroke survivors. J Neurol Sci. 2009;284(1-2):63-8.
http://dx.doi.org/10.1016/j.jns.2009.04.008
https://doi.org/10.1016/j.jns.2009.04.00...
,2525 . Tubone MQ. Avaliação da qualidade de vida em pacientes portadores
de doença cerebrovascular do tipo isquêmico [course conclusion]. Santa Catarina:
Universidade Federal de Santa Catarina; 2007.). In contrast, international studies on
post-stroke QOL with aphasics, do not corroborate this difference between genders,
presenting higher incidence in women, and mean age 60 and above(2323 . Hilari K, Wiggins R, Roy P, Byng S, Smith S. Predictors of
health-related quality of life (HRQOL) in people with chronic aphasia.
Aphasiology. 2003;17(4):365-81.
http://dx.doi.org/10.1080/02687030244000725
https://doi.org/10.1080/0268703024400072...
,2626 . Posteraro L, Formis A, Grassi E, Bighi M, Nati P, Proietti
Bocchini C et al. Quality of life and aphasia: multicentric standardization of a
questionnaire. Eura Medicophys. 2006;42(3):227-30.).
It is important to consider that there are relevant differences between the study samples, what can explain the results. Our study, for instance, includes few subjects with heterogeneous clinic characteristics.
As for the SS-QOL, though the NF aphasic group presents an average score lower than the value found for the F aphasic group, indicating lower QOL, there was no significant statistic difference between the groups. Such values are similar to results of other studies with post-stroke Brazilian samples(99 . Santos AS. Validação da escala de avaliação da qualidade de vida na doença cerebrovascular isquêmica para a língua portuguesa [doctor’s thesis]. São Paulo: Faculdade de Medicina da Universidade de São Paulo; 2007.,2525 . Tubone MQ. Avaliação da qualidade de vida em pacientes portadores de doença cerebrovascular do tipo isquêmico [course conclusion]. Santa Catarina: Universidade Federal de Santa Catarina; 2007.). However, these studies made use of a population comprising aphasics and non-aphasics.
Research done with another QOL tool comparing fluent and non-fluent aphasics showed
that fluent aphasics presented a better QOL score(2626 . Posteraro L, Formis A, Grassi E, Bighi M, Nati P, Proietti
Bocchini C et al. Quality of life and aphasia: multicentric standardization of a
questionnaire. Eura Medicophys. 2006;42(3):227-30.). Moreover, the literature in this
area reports that the severity of the aphasia is one of the principal predictors to
decrease the QOL post-stroke(2323 . Hilari K, Wiggins R, Roy P, Byng S, Smith S. Predictors of
health-related quality of life (HRQOL) in people with chronic aphasia.
Aphasiology. 2003;17(4):365-81.
http://dx.doi.org/10.1080/02687030244000725
https://doi.org/10.1080/0268703024400072...
,2626 . Posteraro L, Formis A, Grassi E, Bighi M, Nati P, Proietti
Bocchini C et al. Quality of life and aphasia: multicentric standardization of a
questionnaire. Eura Medicophys. 2006;42(3):227-30.
27 . Cruice M, Worrall L, Murison R, Hickson L. Finding a focus for
quality of life with aphasia: social and emotional health, a psychocological
well-being. Aphasiology. 2003;17(4):333-53.
http://dx.doi.org/10.1080/02687030244000707
https://doi.org/10.1080/0268703024400070...
-2828 . Patel MD, McKevitt C, Lawrence E, Rudd AG, Wolfe CDA. Clinical
determinants of long-term quality of life after stroke. Age Aging.
2007;36(3):316-22. http://dx.doi.org/10.1093/ageing/afm014
https://doi.org/10.1093/ageing/afm014...
), which agrees with the data found in our
study.
Among the SS-QOL domains, language and upper extremity function were statistically different between F and NF aphasics, with worse rates for the NF aphasics. We did not find comparative studies of these two groups of aphasics using the same QOL questionnaire. Nevertheless, a study with another instrument showed that the domains of communication, physical and psychosocial aspects were different between F and NF aphasics, and that the NF aphasics showed lower scores in these domains(2626 . Posteraro L, Formis A, Grassi E, Bighi M, Nati P, Proietti Bocchini C et al. Quality of life and aphasia: multicentric standardization of a questionnaire. Eura Medicophys. 2006;42(3):227-30.).
The current study demonstrated that the domains most affected by stroke were language, social roles, and thinking in the NF aphasics group, and personality, social roles, and thinking in the F aphasics group. These results partly coincide with the findings in Brazilian research. Some authors(22 . Cordini LK, Oda EY, Furlanetto LM. Qualidade de vida de pacientes com história prévia de acidente vascular encefálico: observação de casos. J Bras Psiquiatr. 2005;54(4):312-17.) found that the most affected domains in the SS-QOL are “energy”, “work”, “upper extremity function”, and “social roles”. It is worth emphasizing the difference between the sample of our study, using only aphasics, and that of those authors, which use subjects who had a stroke episode but did not present aphasia as a sequel.
An international study shows that the most affected domains by a lesional episode, in aphasic and non-aphasic populations, were upper extremity functional, social roles, and language(1010 . Williams LS, Wienberger M, Harris LE, Biller J. Measuring quality of life in a way that is meaningful to stroke patients. Neurology. 1999;53(8):1838-43.).
The literature shows a close relation between effectiveness of communication, social
well-being, and psychological comfort of the aphasic(1515 . Cruice M, Worrall L. Hickson L. Health-related quality of life in
people with aphasia: implications for fluency disorders quality of life
research. J Fluency Disord. 2010;35(3):173-89.
http://dx.doi.org/10.1016/j.jfludis.2010.05.008
https://doi.org/10.1016/j.jfludis.2010.0...
,2727 . Cruice M, Worrall L, Murison R, Hickson L. Finding a focus for
quality of life with aphasia: social and emotional health, a psychocological
well-being. Aphasiology. 2003;17(4):333-53.
http://dx.doi.org/10.1080/02687030244000707
https://doi.org/10.1080/0268703024400070...
). It is also clear in the studies that
the aphasic has a higher number of depression symptoms, difficulties in performing
daily activities, and higher level of dependence(1515 . Cruice M, Worrall L. Hickson L. Health-related quality of life in
people with aphasia: implications for fluency disorders quality of life
research. J Fluency Disord. 2010;35(3):173-89.
http://dx.doi.org/10.1016/j.jfludis.2010.05.008
https://doi.org/10.1016/j.jfludis.2010.0...
,2020 . Carod-Artal FJ, Trizotto DS, Coral LF, Moreira CM. Determinants of
quality of life in Brazilian stroke survivors. J Neurol Sci. 2009;284(1-2):63-8.
http://dx.doi.org/10.1016/j.jns.2009.04.008
https://doi.org/10.1016/j.jns.2009.04.00...
,2727 . Cruice M, Worrall L, Murison R, Hickson L. Finding a focus for
quality of life with aphasia: social and emotional health, a psychocological
well-being. Aphasiology. 2003;17(4):333-53.
http://dx.doi.org/10.1080/02687030244000707
https://doi.org/10.1080/0268703024400070...
,2929 . Hilari K. The impact of stroke: are people with aphasia different
to those without? Disabil Rehabil. 2011;33(3):211-8.
http://dx.doi.org/10.3109/09638288.2010.508829
https://doi.org/10.3109/09638288.2010.50...
,3030 . Ross K, Wertz R. Quality of life with and without aphasia.
Aphasiology. 2003;17(4):355-64.
http://dx.doi.org/10.1080/02687030244000716
https://doi.org/10.1080/0268703024400071...
). Moreover, the aphasic’s condition limits
social relations(77 . Carod-Artal FJ. Determining quality of life in stroke survivors.
Expert Rev Pharmacoecon Outcomes Res. 2012;12(2):199-211.
http://dx.doi.org/10.1586/erp.11.104
https://doi.org/10.1586/erp.11.104...
,2727 . Cruice M, Worrall L, Murison R, Hickson L. Finding a focus for
quality of life with aphasia: social and emotional health, a psychocological
well-being. Aphasiology. 2003;17(4):333-53.
http://dx.doi.org/10.1080/02687030244000707
https://doi.org/10.1080/0268703024400070...
), which explains the findings.
Our study found that the least affected domains in the NF aphasic group are “vision”, “family roles”, and “energy”, and in the F aphasic group, the domains of “vision”, “self-care”, and “mobility”. A Brazilian study indicated “vision”, “mood”, “personality”, and “family roles” as the least affected domains in the SS-QOL(22 . Cordini LK, Oda EY, Furlanetto LM. Qualidade de vida de pacientes com história prévia de acidente vascular encefálico: observação de casos. J Bras Psiquiatr. 2005;54(4):312-17.).
In the final subscale of the questionnaire, the subjects compare each domains in the
present days and before the stroke, and they all evaluate that their QOL worsened
after the lesional episode. However, other studies(99 . Santos AS. Validação da escala de avaliação da qualidade de vida
na doença cerebrovascular isquêmica para a língua portuguesa [doctor’s thesis].
São Paulo: Faculdade de Medicina da Universidade de São Paulo;
2007.,2828 . Patel MD, McKevitt C, Lawrence E, Rudd AG, Wolfe CDA. Clinical
determinants of long-term quality of life after stroke. Age Aging.
2007;36(3):316-22. http://dx.doi.org/10.1093/ageing/afm014
https://doi.org/10.1093/ageing/afm014...
) show that part of the subjects indicate
their QOL remained the same after the stroke. This difference can be explained by
the reduced size of the sample in our study, and also, because it refers to a
population of aphasics only.
In the comparison between NF and F aphasics, the domains “language” and “self-care” present significant difference, with the worst domains belonging to the NF aphasics. Such findings coincide with the literature already mentioned, in which the aspects related to both communication and physical aspects were also different between F and NF aphasics(2626 . Posteraro L, Formis A, Grassi E, Bighi M, Nati P, Proietti Bocchini C et al. Quality of life and aphasia: multicentric standardization of a questionnaire. Eura Medicophys. 2006;42(3):227-30.).
There was a correlation between the mRs and the total score of SS-QOL, indicating
that the functioning of the individuals is related to the QOL. Another study points
out this correlation by showing that people who have worse functioning conditions
have lower QOL(2020 . Carod-Artal FJ, Trizotto DS, Coral LF, Moreira CM. Determinants of
quality of life in Brazilian stroke survivors. J Neurol Sci. 2009;284(1-2):63-8.
http://dx.doi.org/10.1016/j.jns.2009.04.008
https://doi.org/10.1016/j.jns.2009.04.00...
). It also shows that individuals with better
level of functioning and communication condition have less social restrictions,
higher QOL, and better emotional health(2727 . Cruice M, Worrall L, Murison R, Hickson L. Finding a focus for
quality of life with aphasia: social and emotional health, a psychocological
well-being. Aphasiology. 2003;17(4):333-53.
http://dx.doi.org/10.1080/02687030244000707
https://doi.org/10.1080/0268703024400070...
), which agrees with the general findings of
our study.
The literature in the area mentions the role of AAC as a facilitator of the oral and
discursive production in NF aphasics, promoting changes in this group social
relations(1111 . Galli JFM, Oliveira JP, Deliberato D. Introdução da comunicação
suplementar e alternativa na terapia com afásicos. Rev Soc Bras Fonoaudiol.
2009;14(3):402-10.
http://dx.doi.org/10.1590/S1516-80342009000300018
https://doi.org/10.1590/S1516-8034200900...
12 . Chun RYS. Processos de significação de afásicos usuários de
comunicação sumplementar e/ou alternativa. Rev Soc Bras Fonoaudiol.
2010;15(4):598-603.
http://dx.doi.org/10.1590/S1516-80342010000400021
https://doi.org/10.1590/S1516-8034201000...
-1313 . Bahia MM, Chun RYS. Augmentative and alternative communication
repercussion on non-fluent aphasia. Rev CEFAC. 2014;16(1):147-60.
http://dx.doi.org/10.1590/1982-021620146612
https://doi.org/10.1590/1982-02162014661...
). Thus, we can infer that the AAC contributes
to positive changes in the QOL of the aphasic.
CONCLUSION
Our study shows the differences and the impact of aphasia in the QOL of the groups studied, indicating that non-fluent aphasics, with greater difficulty in communication, have lower QOL. Additionally, there is a relation between language, psychosocial factors, and the functioning of individuals, as evidenced in the SS-QOL domains.
These findings expose important aspects to be considered in the intervention in the aphasic health, focusing on the needs of each individual, as well as being an important tool to measure and understand the impact of the disease on the aphasic’s life. Also, the results indicate the AAC resources as a possibility of greater participation of the aphasic in communicative situations, being an auxiliary language resource, and able to favor changes in the QOL of this population.
The AAC is suggested as an issue for future research in the area, in order to benefit health assistance in a humanized way, as a comprehensive health care, to promote health while improving physical and psychosocial well-being, and to change fluent and non-fluent aphasic’s lives for the better.
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» https://doi.org/10.1016/j.jns.2009.04.008 -
21Kauhanen ML, Korpelainen JT, Hiltunen P, Nieminen P, Sotaniemi KA, Myllylä VV. Domains and determinants of quality of life after stroke caused by brain infarction. Arch Phys Med Rehabil. 2000;81(12):1541-6.
-
22Paul SL, Sturm JW, Dewey HM, Donnan GA, Macdonell RAL, Thrift AG. Long-term outcome in the North East Melbourne Stroke Incidence study: predictors of quality of life at 5 years after stroke. Stroke. 2005;36(10):2082-6. http://dx.doi.org/10.1161/01.STR.0000183621.32045.31
» https://doi.org/10.1161/01.STR.0000183621.32045.31 -
23Hilari K, Wiggins R, Roy P, Byng S, Smith S. Predictors of health-related quality of life (HRQOL) in people with chronic aphasia. Aphasiology. 2003;17(4):365-81. http://dx.doi.org/10.1080/02687030244000725
» https://doi.org/10.1080/02687030244000725 -
24Singpoo K, Charerntanyarak L, Ngamroop R, Hadee N, Chantachume W, Lekbunyasin O et al. Factors related to quality of life of stroke survivors. J Stroke Cerebrovasc Dis. 2012;21(8):776-81. http://dx.doi.org/10.1016/j.jstrokecerebrovasdis.2011.04.005
» https://doi.org/10.1016/j.jstrokecerebrovasdis.2011.04.005 -
25Tubone MQ. Avaliação da qualidade de vida em pacientes portadores de doença cerebrovascular do tipo isquêmico [course conclusion]. Santa Catarina: Universidade Federal de Santa Catarina; 2007.
-
26Posteraro L, Formis A, Grassi E, Bighi M, Nati P, Proietti Bocchini C et al. Quality of life and aphasia: multicentric standardization of a questionnaire. Eura Medicophys. 2006;42(3):227-30.
-
27Cruice M, Worrall L, Murison R, Hickson L. Finding a focus for quality of life with aphasia: social and emotional health, a psychocological well-being. Aphasiology. 2003;17(4):333-53. http://dx.doi.org/10.1080/02687030244000707
» https://doi.org/10.1080/02687030244000707 -
28Patel MD, McKevitt C, Lawrence E, Rudd AG, Wolfe CDA. Clinical determinants of long-term quality of life after stroke. Age Aging. 2007;36(3):316-22. http://dx.doi.org/10.1093/ageing/afm014
» https://doi.org/10.1093/ageing/afm014 -
29Hilari K. The impact of stroke: are people with aphasia different to those without? Disabil Rehabil. 2011;33(3):211-8. http://dx.doi.org/10.3109/09638288.2010.508829
» https://doi.org/10.3109/09638288.2010.508829 -
30Ross K, Wertz R. Quality of life with and without aphasia. Aphasiology. 2003;17(4):355-64. http://dx.doi.org/10.1080/02687030244000716
» https://doi.org/10.1080/02687030244000716
-
Research done in the Speech-Language Pathology and Audiology Course, Universidade Estadual de Campinas – UNICAMP – Campinas (SP), Brazil.
-
*
The protocol validation in Portuguese did not involve patients with linguistic-cognitive impairment.
Publication Dates
-
Publication in this collection
17 Oct 2014 -
Date of issue
Oct-Dec 2014
History
-
Received
14 Dec 2013 -
Accepted
29 July 2014