Evaluation of the impact of aphasia on communication and social participation in persons with stroke

Overview

Aim: The research aimed to determine the relationship between the severity of aphasia and patients’ self-assessment of the impact of the speech disorder on their daily communication, participation, and emotional state. Sample and methods: The sample consisted of 32 patients with aphasia lasting for at least 6 months following stroke onset, including 17 women, with a mean age of 59.9 years (standard deviation 12.7). We used the standardized language battery Diagnostics of Aphasia, Alexia, and Agraphia (DgAAA) to assess language impairment, and a subjective pictorial self-report questionnaire, the Slovak adaptation of the Aphasia Impact Questionnaire 21 (AIQ21sk), to evaluate the impact of aphasia. Results: We did not find a statistically significant relationship between the total score on AIQ21sk and the result of the total score of language deficits on the DgAAA test. However, the results indicated a moderately strong and significant relationship between good performance on the language comprehension subtest and lower scores across all AIQ domains, reflecting a milder negative impact of aphasia. Conclusion: Patients’ evaluation of the impact of aphasia revealed that the severity of aphasia alone does not significantly affect their activities, participation, or emotional state in daily life. Therefore, comprehensive care for patients with aphasia should address not only therapy targeting linguistic deficits but also broader aspects of communication.

Keywords:

aphasia – functional communication – Aphasia Impact Questionnaire (AIQ21) – social participation

This is an unauthorised machine translation into English made using the DeepL Translate Pro translator. The editors do not guarantee that the content of the article corresponds fully to the original language version.

 

 

Introduction

  Aphasia is an acquired neurogenic communication disorder that affects approximately one-third of individuals following a stroke. It is characterized by impairments in both the production and comprehension of spoken and written language, with severity ranging from mild to profound. The disorder may disrupt language processing across multiple levels, including phonological, lexical, grammatical, and semantic domains, thereby significantly limiting functional communication across diverse contexts.

 Aphasia has a significantly negative impact on health-related quality of life (HRQoL). People with aphasia report significantly lower overall quality of life and higher rates of depression than people after stroke without aphasia and experience fewer social activities after stroke compared to the intact population. Patients with aphasia performed significantly fewer activities of daily living and experienced poorer quality of life than people after stroke who did not suffer from aphasia, although their physical abilities, personal well-being, and social support were comparable. In most studies, the psychosocial consequences of aphasia were ascertained indirectly, through close relatives or healthcare personnel caring for the person with aphasia, which may also have led to incomplete capture of the HRQoL picture [1-4]. In a study by Hilari et al. [5] the most common factors influencing reduced quality of life based on several studies were summarized:

a)  degree of aphasia and communication deficits.

b)  the presence of depression.

c)  the presence of other medical conditions.

d) the level of participation in daily activities.

 

Social participation is defined as an individual's participation in social activities that enable interaction with others within the community [5]. In other words, it is an individual's involvement in social life. According to Mackulin et al. [6], when specifically assessing HRQoL in patients with aphasia, it should be considered that:

a)  the person being assessed has significant difficulties in understanding and producing speech.

b)  in some cases, information can only be provided by a close person who knows the aphasia patient well.

c)  the administrator (most often a speech-language pathologist) must have experience in assessing and testing persons with aphasia.

d) the evaluation should take the form of an interview rather than a written questionnaire, with questions and answers presented in as direct a manner as possible.

 

The research aimed to investigate the relationship between the degree of aphasia and the patient's assessment of the impact of the language disorder on their daily activities, participation, and emotional state, using a comprehensive language test (Diagnostics of Aphasia, Alexia, and Agraphia; DgAAA) and an adapted Aphasia Impact Questionnaire [6,7].

 

Patients and methodology

The study population consisted of 32 patients (17 women) with aphasia at least 6 months after the onset of stroke, with a mean age of 59.9 years (standard deviation [SD] = 12.7); the youngest and oldest patients were 38 and 89 years old, respectively. The  syndrome of aphasia was determined by the results of the DgAAA comprehensive language test [8], and the degree of aphasia was determined by the total score on this test (70-89% success rate was assessed as mild aphasia, 40-69% success rate as moderate aphasia, and less than 40% success rate on the test was assessed as severe aphasia). Patients with severe aphasia were excluded from the original sample, as in these patients, due to significant impairments in comprehension and speech production, the questionnaire could not be used in such a way that the results could be perceived as objective. The basic demographic data of the patient sample studied are presented in Table 1.

We used the standardized DgAAA language battery [8] to assess language deficits and  adapted Aphasia Impact Questionnaire 21 (AIQ21sk) [9] to assess the impact of aphasia. We provide a brief characterization of them.

The Diagnostic for Aphasia, Alexia, and Agraphia (DgAAA) [8] allows the classification of the  syndrome and quantification of performance on a variety of language tasks. Using this test, it is possible to map all linguistic level in detail and to quantify the performance of the subjects. By examining the patient with aphasia through the entire test, the speech-language therapist gets a comprehensive picture of his/her language abilities. The test battery consists of six parts, which together contain 25 subtests focusing on speech production and comprehension, reading, and writing at the level of words, sentences, and text. The highest score that can be achieved in the whole battery is 500 points (a maximum of 20 points can be obtained in each subtest). The full version of the test is particularly suitable for patients in the chronic stage of the disease when their  condition has stabilized and the type of aphasia changes only minimally.

The Aphasia Impact Questionnaire (AIQ21) is a specific tool allowing the aphasia patient to express his or her subjective view of living with aphasia [7]. In a sense, the AIQ21 questionnaire brings about a paradigm shift in the view of aphasia. Rather than being limited to speech and language difficulties, it provides a comprehensive picture of how the disorder affects several important aspects of a person's life. It allows us to better understand the emotional, social and psychological consequences of aphasia and to provide more individualized and effective therapy.

Eight different versions were used in the original British questionnaire, which differed in the illustrations of the faces used. The illustrations represented men and women from different ethnic groups.

A 5-point visual analogue scale ranging from 0 to 4 is used for the assessment and is made up of different expressions of the characters. In the Slovak version there are two alternatives of AIQ21sk [6]: for women and for men (different images are used). The AIQ21sk contains 21 items that focus on different aspects of living with aphasia. These are dimensions of individual assessment in three subtests: 1. activities, 2. participation and 3. emotional state. The more points a person scores, the more negatively the aphasia affects his or her life (Figure 1).

The visual response options are transformed into a numerical score which is recorded on a recording sheet.

According to the authors of the AIQ21 questionnaire, it allows; (1) documenting and uncovering problems associated with living with aphasia; (2) assessing the impact of these areas as a basis for intervention planning [7]. At the end of the questionnaire there are 3 additional questions that address positive aspects of living with aphasia. These questions offer the opportunity to express the need for any care or support to be provided.

The administration is in the form of an interview conducted by a trained person and lasts between 20-30 minuntes depending on the severity of the aphasia. AIQ21 offers a systematic way to identify and quantify situations that affect the life of the person with aphasia. The official Slovak adaptation of the AIQ21sk is available on the English website [10].

 

Results

Due to the size of the studied sample (n = 32) and the unequal representation of the number of patients with different  syndromes of aphasia, only preliminary conclusions could be drawn from the obtained results, which need to be verified in a larger and more homogeneous sample of patients with aphasia. In Table 2, we present the mean performances of the whole sample in the DgAAA test (separately for each part of the test) and the AIQ21sk questionnaire. For comparison, we also report the maximum score that can be obtained in a given part of the test or questionnaire. While in the DgAAA a higher score means better performance (the patient scores more points for correct answers or solutions), in the AIQ21sk a higher score means a more unfavorable result, i.e. it is an area that the patient evaluates negatively (perceives it as a significant problem). High standard deviation values indicate that these are scores that have a wide variance from the mean within each domain.

Analysis of the results for the entire sample revealed that all individuals with aphasia, irrespective of impairment severity, reported significant limitations across all domains assessed by the Aphasia Impact Questionnaire.

We were interested in whether there was a relationship between overall performance on the language test and its subtests and scores on the AIQ21. The distribution of several variables was significantly different from the normal distribution, for this reason we used Spearman's correlation test in the analyses (aimed at comparing the relationship). In Table 3, we present a comparison of the results of the correlation between performance on the aphasia battery and the AIQ21.

An interesting finding was that the AIQ summary score did not show a significant relationship with the participants' overall DgAAA scores (rs = -0.23; p = 0.18). The comprehension subtests of the DgAAA showed moderate to strong negative relationships with both the AIQ summative score (rs = -0.45; p < 0.01) and the activity (rs = -0.39; p < 0.05) and emotional state (rs = -0.52; p < 0.01) subtests. Higher scores on the comprehension subtest (milder speech comprehension impairment) were correlated with significantly lower scores on the AIQ domains (milder impact of aphasia). In addition, there was still a moderate negative relationship between scores on the DgAAA subtest of production and the subtest of activity in the AIQ21 (rs = -0.41; p < 0.05).

From these preliminary results, we can assume that the degree of language impairment (degree of aphasia) alone does not appear to be the only aspect that aphasic patients perceive as dominant for their life after CMP.

A more objective comparison of results between  syndromes was not possible due to the unequal representation of patients with different types of aphasia. Looking at the mean results of the three groups of patients with Broca's (n = 11, DgAAA = 350.1, AIQ21 = 25.3), conduction (n = 8, DgAAA = 362.6, AIQ21 = 13.3), and anomic (n = 10, DgAAA = 434,2, AIQ21 = 8.4) aphasia, it can be seen that language deficits in patients with fluent aphasia (conductive and anomic) have a less negative impact on their activities, participation and emotional state. Also in these three groups, more severe speech comprehension impairments have been shown to have a limiting effect on the aforementioned areas of daily life.

 

Discussion

The results of the research, as well as the process of applying the Aphasia Impact Questionnaire itself, yielded some interesting findings that have the potential to contribute to improving the diagnosis and treatment of patients with aphasia, as well as to making the whole intervention process as focused as possible on improving their quality of life. This applies not only to the planning and implementation of speech therapy, but also to other members of the complex team involved in the rehabilitation of the patient after stroke (e.g. neurologist, psychiatrist, psychologist and physiotherapist).

Our results indirectly suggest that the degree of language deficits alone will not be the only variable that affects the activities, participation and emotional state of aphasia patients. The same is true for the  syndrome (type) of aphasia. Although the marked impairments in speech production in patients with Broca's aphasia clearly limit the performance of some normal activities of daily living, it is likely that their impact can be mitigated by effective communication strategies learned in speech therapy intervention. Alternatively, those that patients spontaneously develop in the family without the help of a professional.

For patients who have more severe speech comprehension disorders, it is important to determine at the outset of the administration whether the examinee will be able to understand the question by using an illustrative picture and a modified visual response scale. Based on our early experience, such a cutoff is at least 40% performance on subtests for word and sentence comprehension, which is generally viewed as the cutoff for moderate to severe speech understanding disorder. Understandably, however, an experienced  speech-language pathologist can modify instructions during administration to obtain information from patients with more severe speech comprehension disorders.

From a point of view, we see it as important that the results obtained with the AIQ21sk offer important information that can very effectively contribute to a more targeted speech therapy intervention and to the assessment of the effectiveness of the therapy [8]. Also, in talking with patients and their family members, we found that the areas they consider currently important may not be the same for persons with aphasia, for their family members or for speech-language therapists. The direction of therapy and the choice of intervention procedure should, in our opinion, be primarily influenced by the "person concerned" and his/her current needs. Our  experience shows the potential of the AIQ21sk for planning speech therapy goals with an emphasis on their marked individualization [11,12]. The answers that the  speech-language therapist obtains directly from the patient allow for a very targeted choice of intervention procedures that will mitigate the negative impact of aphasia on the activity in question.  speech-language therapists can use procedures that are aimed at facilitating participation (in the family, with friends).

The administration of the questionnaire also provides data and information on what the aphasia patient's actual experience is like in everyday situations. The AIQ21 can also be helpful in signaling whether the implemented therapy for aphasia patients is effective enough to facilitate their interaction with their environment in a way that makes them feel as limited as possible in activities of daily living [11,13]. Last but not least, it is important to emphasize that from the answers in the subjective evaluation questionnaire, the  speech-language therapist can benefit not only in setting the goals of therapy, but can also apply them as an appropriate form of improving the mutual relationship between him/her and the patient with aphasia. The answers obtained to the 21 items of the questionnaire will help to initiate different topics of conversation, to reflect the views on problematic areas from the patient's perspective, to more easily involve a family member in the therapy process, and possibly to confront two, sometimes slightly different, perspectives on quality of life -⁠ the view of the individual patient and the view of the  speech-language therapist, or family member [11].

Although the AIQ21sk is a useful tool that can expand the diagnostic repertoire of  speech-language pathologists, certain limitations must be perceived [6]. Although the title of the questionnaire itself explicitly states that it assesses the impact of aphasia on daily life, it is clear that the effects of other external and internal factors (impaired mobility, deficits in some domains of cognitive function, etc.) are cumulative in the assessment of some items.

 

Conclusion

When providing comprehensive speech therapy care to patients with aphasia, it is important that professionals have a comprehensive range of diagnostic and therapeutic procedures available. When planning therapy, speech and language therapists need to rely on the results of tests or questionnaires that allow a detailed analysis not only of the language deficit but also of the broader context of the impact of aphasia on their daily lives. We were the first in Slovakia to use the Aphasia Impact Questionnaire (AIQ21sk) on a sample of patients with chronic aphasia. In addition to gaining initial experience in its application, we have already gained important information for  and speech therapy practice in the first phase of our research project. According to the patients' own assessment, the degree of aphasia is not the only key factor that brings limitations in their activities and participation in daily life. Given the linguistic and cultural proximity of Slovak and Czech, it will be relatively easy to prepare a Czech adaptation of the AIQ21 and thus offer the methodology also for -logopedic practice in the Czech Republic.

 

Ethical aspects

The work was carried out in accordance with the 1975 Declaration of Helsinki and its revisions in 2004 and 2008 and was approved by the Research Ethics Review Board of the PDF UK on 7/7/2023 in Bratislava.

 

Grant support

The research was supported by VEGA Grant No. 1/0114/22 Quality of life of people with aphasia.

 

Conflict of interest

The authors declare that they have no conflict of interest in relation to the subject of the study.

 

Table 1. Basic demographic data of patients with type of  syndrome and degree of aphasia.

patient	sex	age	aphasia syndrome	degree of failure
1	Woman	71	anomic	Mild
2	man	58	Brocova	Mild
3	man	44	Conductive	Mild
4	man	89	Conductive	moderate
5	Woman	53	Brocova	Mild
6	Woman	43	Brocova	moderate
7	Woman	72	Conductive	Severe
8	man	59	Wernicke's	moderate
9	man	67	anomic	Mild
10	man	53	Brocova	Severe
11	man	60	anomic	Mild
12	man	47	anomic	Severe
13	Woman	63	anomic	Mild
14	Woman	51	anomic	Mild
15	Woman	53	anomic	Mild
16	man	55	Wernicke's	Mild
17	man	60	Brocova	Severe
18	Woman	69	Conductive	Mild
19	Woman	48	Conductive	moderate
20	man	44	Brocova	moderate
21	man	52	anomic	Mild
22	man	88	Conductive	Mild
23	man	61	anomic	Mild
24	Woman	49	Brocova	Mild
25	woman	78	Conductive	Severe
26	Woman	77	Brocova	Mild
27	Woman	63	anomic	Mild
28	Woman	50	Brocova	moderate
29	Woman	74	Brocova	moderate
30	Woman	38	Conductive	moderate
31	man	68	Wernicke's	Mild
32	woman	61	Brocova	Mild

 

 

 

 

 

Table 2. Results of DgAAA and AIQ21 tests in the whole sample of aphasia patients.

	Average score	SD
DgAAA summary score (max. 500)	386,0	77,1
Comprehension subtest (max. 120)	98,9	23,5
subtest production (max. 120)	83,4	23,8
subtest   lexia (max. 140)	114,0	21,6
subtest   graphic (max. 120)	89,4	26,8
AIQ21 summative score (max 84)	30,4	13,8
activities (max. 24)	9,97	5,11
participation (max.16)	3,60	2,34
emotional state (max 44)	16,5	8,44

 

AIQ21 -⁠ Aphasia Impact Questionnaire; DgAAA -⁠ Diagnostic of Aphasia, Alexia and Agraphia; SD -⁠ standard deviation

 

 

Table 3. Correlation between the dimensions of the DgAAA and the AIQ21 questionnaire.

	AIQ21 summary score	AIQ21 activities	AIQ21 participation	AIQ21 emotional state
DgAAA summary score	-0,23	-0,32	-0,00	-0,22
Comprehension subtests	-0,45**	-0,39*	-0,08	-0,52**
Production subtests	-0,23	-0,41*	-0,02	-0,13
Reading subtests	-0,13	-0,25	0,04	-0,12
Writing subtests	-0,22	-0,32	-0,09	-0,22

The table shows the Spearman correlations between the dimensions of the DgAAA and the AIQ21. Statistically significant correlations (p < 0.05) are presented in bold

*p < 0.05; **p < 0.01

AIQ21 -⁠ Aphasia Impact Questionnaire; DgAAA -⁠ Diagnosis of Aphasia, Alexia and Agraphia