During the last twenty years of medical research quality of life has become a criterion for rating the individual state of feeling healthy or the experience of daily living for specific subgroups, for example, women suffering from breast cancer or patients with another chronic illness.

In medical research quality of life is divided into specific categories of daily living. Today the following four dimensions are usually measured in quality of life research:

1 . physical state
2 . psychological state
3 . social well being
4 . every day functioning

(Bullinger et al. 1991)

Our study is engaged with the question how aphasics rate their quality of life with respect to these four dimensions of daily living.

Both in the work with out-patients and in clinical rehabilitation, speech and language therapists usually try to achieve an impression about how the aphasic patients feel in their lives. But in most cases the patients have problems expressing themselves adequately. And the relatives can often give only a fragmentary impression.

The question of individual burden is really important for speech and language therapy work. Speech and language problems could be manifested in different parts of life. For one person the most severe problems might lie in family living, for another in leisure or in social interaction. In order to take into account the relevant communicative needs of a patient, it is necessary to understand the individual focus of complaint to initiate a successful therapeutic intervention.

In addition quality of life ratings can be used to evaluate the efficiency of rehabilitation: does self sufficiency grow during rehabilitation and does this change remain after a rehabilitation period? In this case, quality of life measurement could be an instrument to evaluate our work in a very holistic and extensive way.

We want to present two studies. The first study deals with the development of an inventory to assess the quality of life of aphasic patients. In the second study we investigated the quality of life of 31 aphasic patients and their relatives over a longer period to see, whether and how the estimation of quality of life changes.

Existing quality of life self report inventories based on written questions are not practicable for aphasics because of their frequent reading deficits or, if read aloud by the therapist, because of comprehension deficits. Therefore we developed a new, pictorial assessment. The new questionnaire is the adapted form of a quality of life inventory for neurological patients ALQI developed by Hütter in 1995.

Each of the 90 items of the ALQI presents a statement of a physical or psychosocial complaint, which is judged to be true or false by the patients themselves. The patients’ self-rating version of the ALQI provides an additional 3-point scale per item for weighting the severity of a complaint. This allows the patients to indicate how severely they feel affected by each complaint judged to be true. The following example is taken from the category "social interaction":

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• Ich bin viel allein ("I am often alone")

         ja ("yes")     nein ("no")

• Dies belastet mich ("this affects me")

         nicht ("not")     mittel ("moderately")     sehr ("much")

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The ALQI items were transformed into a pictorial version, in order to enable aphasic patients to understand the content of the statements and to give nonverbal responses. The following picture shows the pictorial version of the example given above. All pictures consist of simple line-drawings made by a professional designer. Half of the depicted characters are female, half are male. The people with a disability have dark hair.

As illustrated, a written phrase was added to each situation depicted expressing the core proposition in telegraphic style as used in newspaper headings. When a new picture is shown, these headings are read out to the patient by the examiner in order to activate multimodal information processing. Simple pictograms were used for the patients to indicate their ratings. The statements of possible complaints had to be judged by a forced choice between "thumb up/down" combined with the written phrases "yes, that’s true/no, that’s not true". In case of "yes", the patient has to judge the degree of strain by making a choice between a neutral, a frowning, and a weeping face combined with the written emotional expressions "doesn’t matter" (German "egal"), "bad" (German "schlimm"), "very bad" (German "sehr schlimm").

Like the SIP, the ALQI in its original and in our new pictorial version allows for the calculation of a physical and a psychosocial subscore as well as from the total score. The subscores are derived from several item groups expressing different categories of quality of life. In order to meet the special situation of patients with language disorders and possible additional cognitive dysfunction two more categories were added. The total number of items is 117.

With the new pictorial quality of life inventory we could assess the aphasics’ quality of life whereas with the relatives the written version of the inventory could be used.

In order to control for the mood state of the patients, we selected the subscale ‘Depression’ of the Profile of Mood State (POMS, McNair et al., 1971), which was given to the relatives together with the written version of the ALQI. In order to assess the severity of the language deficits and to assign these to an aphasic syndrome, we used the Aachen Aphasia Test (AAT, developed by Huber et al., 1983).

The goal of our first study was to show the comparability of the two versions: the original written one and the new pictorial one. In a second step we wanted to know whether aphasics and their relatives show specific patterns of quality of life assessment.

The study was conducted on the aphasia ward of the University Hospital in Aachen. Only those patients were included in the quality of life study who had been staying at home for at least 3 weeks before admission to the ward. During the first day on the ward, they were given the pictorial version of the ALQI with the instruction to judge their everyday life during the previous week at home. The assessment took place in a quiet room with no time limit.

On admission, the written version of the ALQI was given to a family member who accompanied the patient and who was familiar with the living conditions at home. The partners were asked to fill out the written version of the ALQI before leaving the hospital.

The study included 26 patients and 24 partners. One relative declined to participate and one patient was living alone. In 21 instances the written ALQI was filled out by the spouse, in 3 instances by other family members. The median age of the patients was 54 years, 7 patients were female and 19 male. In all patients the etiology was vascular, with a median duration of aphasia of 12 months. 19 patients suffered from hemiparesis, 7 patients had no movement disorders. Aphasia was classified to be non-fluent in 17 cases and fluent in 9 cases.

For each subject we counted the number of ‘yes’ responses for each of the eleven categories, the two subscores and the total score.

In the following figure you can see the mean values for the ratings of the patient and the relatives.

It could be shown that similar mean numbers of complaints were found for the patients’ ratings with the pictorial assessment and the relatives’ ratings with the written version. This held for the total score as well as the physical and the psychosocial subscore and each category. The highest complaints for patient’s and relative’s ratings was seen in the categories language, communication, cognition, leisure and home management.

Only two of the numerical differences turned out to be significant when multiple t-tests for dependent samples were applied. For the category ‘activity’ the patients reported significantly more complaints than the relatives (p=.08) In case of the category ‘language’ the relatives reported markedly more complaints (p= 04). The other categories show no significant differences for patients and relatives ratings (all p-values greater than .p= 0.1).

It is obvious that quality of life ratings can be influenced by several demographic and clinical factors. We considered the following ones:

AGE: below vs equal/above median age of 54 years (n = 11 vs 15),

EDUCATION: lower vs higher level (n = 13 vs 13),

DURATION OF APHASIA: less vs more than 12 months (n = 12 vs 14), median split

SPEECH OUTPUT: fluent vs nonfluent (n = 9 vs 17) derived from AAT-ratings of syntax in spontaneous language,

LANGUAGE COMPREHENSION: poor vs moderate to good (n = 9 vs 17) derived from percentile ranks of Token-Test scores being part of the AAT,

By means of t-tests we assessed the impact of these factors.

An impact of clinical factors for the patients’ and the relatives’ quality of life rating was shown for speech output, movement disorders and mood state in regard to the total score and the physical and psychosocial subscore.

Speech output: Non-fluent aphasics and their relatives reported more complaints than fluent aphasics and their partners on the physical subscore and the total score, but not on the psychosocial subscore. Apparently this was related to the presence of severe and moderate paresis in all but one of the 17 non-fluent aphasics as opposed to only 3 cases of mild paresis in the 9 fluent aphasics.

Movement disorders: As can be expected, hemiparetic patients reported more complaints on the physical subscore and on the total score than patients with no or with recovered movement disorders.

Mood state: Furthermore, patients who were judged as being depressive by their relatives indicated more complaints than non-depressive patients on the psychosocial categories. The relatives also stated that depressive patients had very many psychosocial handicaps.

In addition, for the categories cognition and language, duration of aphasia and language comprehension appeared to play a role, but not movement disorders. Patients suffering from chronic aphasia were judged by their spouses to have more complaints about limited cognitive capacities than patients with acute aphasia. Furthermore for the category cognition patients who were judged to be depressive indicated more complaints than non-depressive patients.

Our second investigation deals with the question, whether our inventory could assess changes in quality of life ratings over time.

We wanted two get answers to the following questions:

• Is there a change in quality of life measurement from the beginning to the end of the rehabilitation programme?
• Are there any changes after a period of time at home?
• Are there differences depending on the duration of aphasia?
• Are there differences between the assessments of patients and relatives?
• Are there changes in the mood state of the aphasics over time?

To assess the mood state of the aphasics directly and not only by asking the relatives, visual analogue mood scales were applied. The relatives were asked to give an estimation of the mood state of their aphasic partners with a standardized inventory, the BDI. And like the aphasics themselves, the relatives were asked to judge the degree of a strain on a three level score.

Based on the duration of aphasia we distinguished three groups: a post-acute group (1-12 months), a chronic group (13-24 months) and a long lasting chronic group (longer than 24 months).

The study included three time measurements: at the beginning of a 7 week intensive rehabilitation programme in our aphasic ward, at the end of this period and after 3 months at home. The patients were assessed with the ALQI at all three points of time, the relatives only at the beginning and at the end of the study. For the assessment of the syndrome and severity of aphasia we conducted the AAT at the beginning and the end of the rehabilitation programme, for the global assessment of the language deficits we conducted the Token Test at all three points of measurement.

The study included 31 patients and relatives. The median age of all patients was 54 years, 8 patients were female and 23 male. In all but one patient the aetiology was vascular, with a median duration of aphasia of 22 months over all groups. 15 patients suffered from hemiparesis, 16 patients had no movement disorders. Aphasia was classified as non-fluent in 19 cases and fluent in 12 cases. The following table shows the clinical data with respect to the three subgroups.

Like in the first study, we considered two subscores: a physical and a psychosocial subscore. For both subscores we counted the ‘yes’ responses.

The following diagram shows preliminary data:

For the patients, there was a difference in the physical subscore over time. The complaints decreased from the beginning to the end of the rehabilitation programme and again three months after the programme was finished. Specifically for the post-acute and the long lasting group these differences could be shown. Also for the psychosocial subscore, there was a reduction of complaints over time for all groups of aphasics.

With respect to relatives’ ratings no reduction in complaints appeared on the physical subscore over time, but differences between the three subgroups could be observed. For the post-acute group, the number of complaints was lower than the number of complaints for the two chronic groups. For the psychosocial subscore, there was a reduction of complaints especially for the long lasting chronic group.

In general, the relatives reported more complaints than the aphasics. And for both, relatives and patients, more psychosocial than physical complaints were reported.

For the Token Test as measurement for overall language capacities, there was a reduction of errors over time for the post-acute subgroup and the chronic group. For the long lasting chronic subgroup there was no better language outcome.

The mood state of the aphasics was stable over the whole time. This held for the relatives’ ratings as well as for the self rating with the analogue mood scales.

We developed a pictorial quality of life inventory to have the opportunity to let aphasic patients rate their quality of life themselves. In our first investigation we were able to show the comparability of the pictorial version with the original written version. For aphasics and relatives the categories of daily living most affected apart from language, communication and cognition were leisure and home management. Furthermore, the clinical factors fluency of speech, movement disorder and mood state had an impact of the quality on life ratings for both, relatives and aphasics.

In our second investigation we were able to show that there was a change of quality of life ratings over time during an intensive speech and language therapy rehabilitation programme and that this reduction of complaints held up after returning back to daily living. Especially the psychosocial factors remained stable. This held for all three subgroups, the post-acute subgroup of aphasics and their relatives as well as for the chronic and long lasting chronic subgroup. For long lasting chronic aphasics quality of life improved during rehabilitation, although the language capacities measured by the Token Test did not improve.

It is our opinion that quality of life assessment by both relatives and aphasics could be a helpful method to rate rehabilitation outcome in a very comprehensive way. We know that aphasia is not only a language handicap but it also influences the personal and social circumstances of the aphasics and their relatives. Even for aphasics with chronic language deficits quality of life improves during rehabilitation.

It is our aim that quality of life and mood state measurement for both aphasics and relatives should become more and more a standard procedure in rehabilitation management.