Measuring quality of life in aphasia: Results from two scales

Background: Although aphasia affects quality of life (QoL), the impact within specific domains (e.g., psychosocial, communication) is poorly understood. Moreover, the complex and multidimensional nature of QoL renders it difficult to measure accurately using a single global scale.

Aims: Using two recently developed QoL scales, the Stroke and Aphasia Quality of Life Scale‐39, (SAQOL; Hilari, Byng, Lamping, & Smith, 2003a Hilari, K., Byng, S., Lamping, D. L. and Smith, S. C. 2003a. Stroke and Quality of Life Scale‐39 (SAQOL‐39): Evaluation of acceptability, reliability and validity.. Stroke, 34: 1944–1950. [Crossref], [PubMed], [Web of Science ®] , [Google Scholar]) and the American Speech Language Hearing Association's Quality of Communication Life Scale (QCL; Paul et al., 2004 Paul, D. R., Frattali, C. M., Holland, A. L., Thompson, C. K., Caperton, C. J. and Slater, S. C. 2004. Quality of Communication Life Scale, Rockville, MD: The American Speech‐Language‐Hearing Association.  [Google Scholar]), this study aimed to document the domains of QoL that were most affected for participants with aphasia compared to control participants, as well as to determine the relationship between the two scales, their sub‐domains, and linguistic variables in aphasia.

Methods & Procedures: The two scales were administered to a group of 19 participants with aphasia (14 male, 5 female), ages ranging from 27 to 79 years, and 19 age‐ and gender‐matched control participants. Various types and severity of aphasia were represented in the aphasia group. The performances of aphasia and control groups were compared, and correlation analyses examined the relationship between the two scales and their sub‐domains in the aphasia group only.

Outcomes & Results: Compared to control participants, QoL was lower in participants with aphasia, with the communication sub‐domain of SAQOL and socialisation/activities sub‐domain of QCL being the most affected areas of functioning. Between the two scales, the communication sub‐domain of SAQOL correlated with the socialisation/activities sub‐domain and the QCL mean. Moreover, linguistic variables correlated strongly with psychosocial, communication and socialisation/activities sub‐domains of QoL.

Conclusions: Measuring QoL using the SAQOL and the QCL captures different but equally important aspects of experiences of living with aphasia. When interpreted together, they provide a holistic picture of functioning in aphasia that includes broad overviews of QoL from the SAQOL and a finer‐grained analysis of communication impairments on QoL from the QCL.     

Individual variation and task effects: Response to Inglis

Background: Stroke is a major global health problem. Aphasia, as a complication of stroke, has an impact on the quality of life (QOL). Few studies exist on the factors associated with QOL of people with aphasia (PwA), especially in communication, in emerging countries.

Aims: To evaluate factors associated with QOL in the domain of communication using Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39) to assess PwA in the southern region of Brazil.

Methods &; Procedures: Medical files of participants diagnosed with ischaemic stroke admitted to a public hospital in Joinville, Brazil, from August 2010 to December 2011 were reviewed. QOL in PwA was assessed using SAQOL-39 scale. Some factors associated with prognosis of aphasia were assessed with respect to QOL with an emphasis on the communication domain.

Outcomes &; Results: Of 50 PwA evaluated, 60% were male. The mean age was 69.6 years and the average time after stroke was 11.7 months. Overall mean score on the SAQOL-39 scale was 3.09, standard deviation (SD) = 0.6, range = 1.67–4.62. The psycho-social domain demonstrated a statistical trend towards significance for the lowest score obtained (p = .09). The habit of reading pre- and post-onset of stroke, higher economic level, larger time post-onset of stroke and higher physical domain scores were significantly associated with higher scores in the communication domain. There was no association between the communication domain scores with age, gender, caregivers, number of inhabitants in the home and physical and social activity.

Conclusion: In the communication domain, reading showed positive implications on QOL. Further studies are needed to evaluate the role of reading practices as a therapeutic option in PwA.     

Long-term maintenance of novel vocabulary in persons with chronic aphasia

Background: The study of novel word learning in aphasia can shed light on the functionality of patients' learning mechanisms and potentially help in treatment planning. Previous studies have indicated that persons with aphasia are able to learn some new vocabulary. However, these learning outcomes appear short-lived and evidence for the ability to use the newly learned words in the long term is lacking.

Aims: Participants with aphasia and matched controls underwent short training where they were taught to name novel objects with novel names. We studied the participants' word learning and particularly their long-term maintenance. We also examined whether the language and verbal short-term memory impairments of the participants with aphasia related to their ability to acquire and maintain phonological and semantic information on novel words.

Methods & Procedures: Two participants with nonfluent aphasia, LL and AR, and two matched controls took part in the experiment. They were taught to name 20 unfamiliar objects by repeating the names in the presence of the object picture. Half of the items carried a definition that was used to probe incidental semantic learning. There were four training sessions, a post-training test, and follow-up tests up to 6 months post-training. Learning measures included recognition of the trained objects, as well as spontaneous and cued recall in visual confrontation naming. Incidental semantic learning was measured by spontaneous recall of the definitions.

Outcomes & Results: Combining spontaneous and phonologically cued responses, LL acquired 70% and AR 55% of the novel words. With phonological cueing, LL named 50% of the items correctly up to 6 months post-training (vs 95–100% for the controls) and AR 25% up to 8 weeks post-training. AR's lexical-semantic processing, pseudoword repetition and verbal short-term capacity were inferior to those of LL. In line with this, AR learned fewer words and showed more decline in recognition memory for the trained items, and weaker recall of the semantic definitions.

Conclusions: Our results support previous findings that people with aphasia can learn to name novel items. More importantly, the results show for the first time that, with phonological cueing, an individual with aphasia can maintain some of this learning up to 6 months post-training. Moreover the results provide further evidence for the significance of the functional status of lexical-semantic processing on word learning success.     

The complexities of speaking for another

Background: While it is recognised that conversation partners of people with aphasia often speak for them, investigation of “speaking‐for” incidents has shown that these comprise a wide range of behaviours, leading Simmons‐Mackie, Kingston, and Schulz (2004 Simmons‐Mackie, N., Kingston, D. and Schultz, M. 2004. “Speaking for another”: The management of participant frames in aphasia.. American Journal of Speech‐Language Pathology, 13: 114–127. [Crossref], [PubMed], [Web of Science ®] , [Google Scholar]) to identify a “fine interactive line” (p. 123) between “speaking for” and “speaking instead of”. To date, however, there has been little exploration of these behaviours in the context of everyday family conversation; furthermore, little is known about how family members themselves interpret the actions of speaking for their relative with aphasia.

Aims: The goal of this paper is to describe how the husband of a woman with progressive nonfluent aphasia (PNFA) and their adult children experienced and interpreted his ways of speaking for her.

Methods & Procedures: Findings are drawn from a qualitative case study exploring a family's experiences of progressive aphasia through analyses of their talk. Methodology included a thematic analysis of in‐depth interviews conducted with each of six family members and conversation analysis of their everyday conversations together, selected and audio recorded by the participants themselves over a 3‐month period.

Outcomes & Results: The husband's “speaking‐for” behaviours, which emerged as a significant theme in the interview data from him and all four adult children, were linked to long‐standing patterns of interaction but were described as problematic in the context of his wife's aphasia. Conversation analysis revealed that he used three patterns of “speaking‐for” behaviours, each with different interactional strategies and consequences.

Conclusions: Discussion highlights the nuances, challenges, and complexities of “speaking for” behaviours when considered in the historical context of relationship.     

Modified Response Elaboration Training: A systematic extension with replications

Background: Response Elaboration Training (RET; Kearns, 1985 Kearns, K. P. 1985. “Response elaboration training for patient initiated utterances”. In Clinical aphasiology, Edited by: Brookshire, R. H. 196–204. Minneapolis, MN: BRK.  [Google Scholar]) has been found to consistently result in increased production of content in discourse with persons with aphasia. Positive treatment effects have been reported for persons representing a variety of aphasia types and severities. RET was modified for application with persons with acquired apraxia of speech and aphasia and positive outcomes were also associated with the modified treatment (Wambaugh & Martinez, 2000 Wambaugh, J. L. and Martinez, A. L. 2000. Effects of rate and rhythm control treatment on consonant production accuracy in apraxia of speech. Aphasiology, 14: 851–871. [Taylor & Francis Online], [Web of Science ®] , [Google Scholar]). Although RET has received systematic study, its stimulus generalisation effects are not well understood.

Aims: This investigation was designed to measure the stimulus generalisation effects of modified RET (M-RET) in a variety of conditions as well as to further study the effects of M-RET applied to a personal recount condition.

Methods & Procedures: Multiple baseline designs (across behaviours and participants) were utilised to examine treatment effects. Treatment was applied sequentially to picture sets and a personal recount condition with six persons with chronic aphasia. Production of correct information units (CIUs) was measured in the following conditions: (1) discourse production in response to sets of trained and untrained pictures, (2) home conversations, and (3) production of discourse in structured tasks. Formal measures of functional communication were also completed prior to and following treatment.

Outcomes & Results: Increases in production of CIUs in response to pictures were observed for 11 of the 12 applications of M-RET to picture sets. Response generalisation to untrained picture sets was associated with M-RET applied to pictures sets; increases were slight and were greater for untrained sets that were probed more frequently. Maintenance of gains was generally strong for the participants with nonfluent aphasia, but was minimal for the participant with fluent aphasia. Gains were not evident for M-RET applied to personal recounts; only one participant evidenced changes possibly associated with treatment in the personal recount condition. Improvements in structured discourse samples and a functional communication measure were observed for the majority of the participants following treatment. Lack of compliance in completion of recordings of home conversations limited the utility of that measure.

Conclusions: M-RET applied to pictures resulted in improvements in production of content in treated and untreated picture conditions for the majority of the participants. Treatment effects extended to additional outcome measures. Although some positive changes were observed for the participant with fluent aphasia, maintenance was problematic. Application of M-RET to a personal recount condition was not associated with improved performance for most of the participants.     

Judging conversation: How much is enough?

Background: Perceptual ratings provide a means of evaluating conversations involving individuals with aphasia. The influence of sampling segments of conversation and of segment length has not been established.

Aims: To investigate the impact of the duration of the conversational segment on judges' perceptual ratings of elements of conversations between individuals with aphasia and their conversation partners.

Methods & Procedures: A total of 64 speech pathology student judges rated two previously video-recorded conversations, elicited through a video-retelling task, between two individuals with severe aphasia and their respective partners via the Measure of Skill in Supported Conversation and the Measure of Participation in Supported Conversation (Kagan et al., 2004 Kagan, A., Winckel, J., Black, S., Duchan, J. F., Simmons-Mackie, N. and Square, P. 2004. A set of observational measures for rating support and participation in conversation between adults with aphasia and their conversation partners. Topics in Stroke Rehabilitation, 11: 67–83. [Taylor & Francis Online] , [Google Scholar]). Each judge was randomly assigned a segment from one or both conversations. The segment lengths were 3 minutes, 5 minutes, 10 minutes (for the longer conversation only), and the entire conversation (10:30 minutes and 19:17 minutes). The effect of segment duration and the interaction between conversation and segment duration were analysed for each rating scale using a 2?×?3 factorial analysis of variance.

Outcomes & Results: There was no significant main effect for segment duration for any of the four rating scales of the Measure of Skill in Supported Conversation and the Measure of Participation in Supported Conversation.

Conclusions: Aphasiologists who utilise these ratings of conversation as outcome measures can base the ratings on a segment of the conversation rather than the entire conversation. A 3- or 5-minute segment of a longer conversation on which no time limit has been placed is adequate to provide an accurate perceptual judgement.     

A comparison of client and therapist goals for people with aphasia: A qualitative exploratory study

Background: A considerable body of literature attests to the efficacy of client and therapist collaborative goal setting to achieving optimal rehabilitation outcomes. Collaborative goal setting and shared decision making relies on good communication, thus potentially disadvantaging people with aphasia.

Aims: This study aims to identify the similarities and differences between client goals and therapist goals in rehabilitation for people with aphasia and to explore reasons why any differences occur.

Methods & Procedures: Three speech-language pathologists and four people with aphasia participated in in-depth semi-structured interviews to identify rehabilitation goals. All the interviews were transcribed and analysed using qualitative content analysis.

Outcomes & Results: Results indicated both matching and mismatching of goals between the clients and the speech-language pathologists. Matched goals tended to focus on communication outcomes. Mismatched goals were those associated with the client's desire to return to previously valued activities. Reasons for the mismatching included: impaired communication made collaboration on goal setting difficult, the service-delivery approach, the goal was perceived to be outside the speech-language pathologist's scope of practice, and the goal was not considered to be appropriate within the confines of the rehabilitative situation.

Conclusions: This study highlights the need for speech-language pathologists to understand their clients' goals and how these can be incorporated into rehabilitation. A re-examination of some professional beliefs was highlighted. Future research may lead to educational resources that enable better collaborative goal setting between therapist and client so that outcomes of rehabilitation are optimised.     

Masked repetition priming effects on naming in aphasia: A Phase I treatment study

Background: It has been suggested that lexical access deficits in aphasia may be the result of impaired automatic activation of the networks that support language processing, a system that operates implicitly, outside conscious awareness. This raises the question of whether there might be a way to address rebuilding these implicit networks directly, rather than through the explicit treatment protocols that are typical of aphasia therapy. Masked priming is one method by which the language system can be automatically activated, while limiting or preventing the influence of conscious, explicit processing.

Aims: This Phase I study was undertaken to investigate the potential effectiveness of masked repetition priming as a treatment for anomia.

Methods & Procedures: This study used a single-participant, ABA, multiple-baseline repeated-probe design. A total of 22 training sessions were completed across 4 weeks. Training involved repeated presentation of masked repetition primes paired with target pictures prior to attempts at naming those pictures. Untrained items were presented an equal number of times, but without prime words. Repeated naming probes administered before, during, and after treatment were used to measure effects of training (naming trained stimuli) and generalisation (naming within and across semantic categories). Pre- and post-training assessment with broader tests of language function and conversation were also completed.

Outcomes & Results: Results revealed a small effect of training on naming of trained items in one category, as well as a pattern of improvement in the other category that did not quite meet the criterion for a small effect. There was also a medium cross- category generalisation effect, although no generalisation effect was seen to untrained items within semantic categories. Improvements were seen on some measures of general language function.

Conclusions: Masked priming can elicit changes in naming ability over time, and may have potential as a tool for improving word retrieval in individuals with anomia. Results warrant further investigation.     

Improving quality of life in aphasia—Evidence for the effectiveness of the biographic-narrative approach

Background: Caused by the constraints in communication, people with aphasia experience a pronounced decrease in quality of life (QoL). Beyond that identity negotiation is hindered which is crucial for QoL. This increases the severe loss of QoL. In sociocultural theories, it is postulated that identity is created through social interaction with others. In telling life stories, people build meaning and affirm identity. Biographic-narrative approaches use such life stories to support identity (re)development after disruptive events like stroke. Specific communication skills are needed for this, i.e., biographic-narrative competency. Therefore, such approaches have to be modified for the use in people with aphasia.

Aims: We target on the development and evaluation of an interdisciplinary multimodal approach of biographic-narrative work. The primary aim is to improve QoL through identity renegotiation.

Methods & Procedures: Five face-to-face interviews and seven group sessions were conducted in a before and after design over 10 weeks, with a follow-up assessment after three months. The intervention took place in ambulant rehabilitation units and at the Catholic University of Applied Sciences Mainz, Germany. The interviews comprise three narrative in-depth interviews, allowing participants to tell their life narration and two further semi-structured interviews to engross issues and prepare group topics. Narrations were supported by a multimodal approach, e.g., by pictures. To measure QoL, the Aachen Life Quality Inventory (ALQI), the Satisfaction with Life Scale (SWLS) and the Visual Analogue Mood Scales (VAMS) were used. Additionally, qualitative data was ascertained by semi-structured interviews with questions targeting personal growth or identity change. Seventeen participants, recruited consecutively from ambulant rehabilitation units and aphasia support groups, participated in the study. Almost all had a chronic but different type of aphasia (mean time post-stroke 40.82 months).

Outcomes & Results: We found a significant improvement in health-related QoL measured by the ALQI (p < .05), which remained stable after three months without intervention. Also the self-reported mood state “happiness” grew significantly, “confused” and “tense” sank significantly (p < .05). As expected, overall life satisfaction which is a very broadly based and stable judgment did not change. According to self-reports in semi-structured interviews at the end of the intervention participants experienced a change in perspective accompanied by a change in quality of participation.

Conclusions: QoL in people with aphasia can be improved by means of biographic-narrative intervention.