Validating the Communicative Participation Item Bank (CPIB) for use with people with aphasia: an analysis of differential item function (DIF)

Background: The term “communicative participation” refers to participation in the communication aspects of life roles at home, at work and in social and leisure situations. Participation in life roles is a key element in biopsychosocial frameworks of health, such as the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) and the Aphasia Framework for Outcomes Measurement. The Communicative Participation Item Bank (CPIB) was developed as a patient-reported measure of communicative participation for adults. Initial validation focused on adults with motor speech or voice disorders. No prior studies have conducted quantitative validation analyses for the CPIB for people with aphasia (PWA).

Aims: The primary purpose of this study was to begin validation of the CPIB for PWA by conducting an analysis of differential item functioning (DIF). A DIF analysis was used to identify whether item parameters of the CPIB differed between PWA and the populations used in prior CPIB calibration. Secondary analyses evaluated the level of assistance needed by PWA to complete the CPIB, relationships between the CPIB and a gold-standard patient-reported instrument for PWA—American Speech-Language-Hearing Association Quality of Communication Life Scale (ASHA-QCL) and relationships between PWA and family proxy report on the CPIB.

Methods & Procedures: This study included 110 PWA and 90 proxy raters. PWA completed a battery of patient-reported questionnaires in one face-to-face session. Speech-language pathologists provided communication support. Data on aphasia severity from the Western Aphasia Battery—Revised (WAB-R) and demographic data either existed from prior research or were collected during the session. Proxy raters completed a similar battery of self-report questionnaires.

Outcomes & Results: Results of the DIF analysis suggested statistically significant DIF on two of the 46 items in the CPIB, but the DIF had essentially no impact on CPIB scores. PWA with WAB-R Aphasia Quotient scores above 80 appeared comfortable reading the CPIB items, although required occasional assistance. Most participants who were unable to complete the CPIB had WAB-R Aphasia Quotient scores lower than 50. Correlation between the CPIB and ASHA-QCL was moderate; and correlation between PWA and proxy scores was low.

Conclusions: Most PWA were able to respond to CPIB items, although most required or requested support. Although these results are preliminary due to a small sample size, the data support that the CPIB may be valid for PWA. Caution is warranted regarding proxy report because of low correlation between PWA and proxy ratings.     

Sensitivity to change and responsiveness of the Stroke and Aphasia Quality-of-Life Scale (SAQOL) in a Singapore stroke population

Background: The health-related quality of life (HRQoL) of people with aphasia (PWA) in Singapore is unknown.

Aims: To compare outcomes between stroke survivors with and without aphasia in Singapore and examine the sensitivity and responsiveness to change of the Stroke and Aphasia QOL Scale (SAQOL-39g) and its Singapore (Mandarin) variant, SAQOL-CSg.

Methods & Procedures: A longitudinal cohort study was conducted with stroke survivors with and without aphasia. Participants underwent a series of questionnaires at 3 and 12 months post-stroke including SAQOL-39g/SAQOL-CSg, Barthel Index, Modified Rankin Scale (MRS), Mini Mental State Examination, Frontal Assessment Battery, Center for Epidemiologic Studies Depression Scale and the EQ-5D. The following data analyses were conducted: comparison of stroke outcomes between participants with and without aphasia, computation of floor and ceiling effects, calculation of effect sizes (ESs) to determine sensitivity to change and estimation of minimally important differences (MIDs) for examining responsiveness.

Outcomes & Results: A total of 78 participants (29.5% female, 29.5% PWA, mean age 64.1 years) completed all the assessments on both occasions. At 12 months post-stroke, PWA had higher levels of disability on the MRS (Mann–Whitney U = 294.5, p < 0.01) and reported significantly lower quality of life on the SAQOL-39g/SAQOL-CSg (U = 349, p < 0.01) and the EQ-5D index (U = 447, p < 0.05). In terms of sensitivity to change, the SAQOL-39g/SAQOL- 35CSg showed a small degree of improvement for the entire sample (ES, r = 0.22) but change was only significant for participants without aphasia. MID estimates for improvement were 0.21 on the SAQOL-39g/SAQOL-CSg and 0.17 on the EQ-5D index.

Conclusions: PWA reported poorer HRQoL even when physical function was comparable. SAQOL-39g/SAQOL-CSg was found to have adequate sensitivity to change (i.e., reflect at least small change) up to 12 months post-stroke. MID estimates of the SAQOL-39g/SAQOL-CSg may assist in the interpretation of changes in scores in the clinical setting.     

Validation of the Italian version of the Kagan scales for people with aphasia and their conversation partners

Background: The importance of conversation partners (CPs) for persons with aphasia (PwA) was recently highlighted. Trained CPs are shown to increase communicative access and improve quality of life. The Kagan scales, i.e., “Measure of skills in Supported Conversation” and “Measure of Participation in Conversation” (the MSC-MPC scales), between PwA and their CPs were designed to assess the communication dyad. The MSC-MPC scales were translated and adapted to Italian in 2015.

Aim: To validate the Italian version of the MSC-MPC scales (I-MSC/MPC) by assessing intra- and inter-rater reliability and concurrent validity.

Methods & Procedures: Thirty-two couples formed by 16 PwA and two CPs (one trained and one untrained) for each PwA were enrolled in the study. Aphasia severity was staged by the Therapy Outcome Measures “Dysphasia” impairment scale. Functional communication and pragmatic abilities were assessed with the I-ASHA-FACS and the Pragmatic Protocol, respectively. The PwA were videotaped while communicating both with trained and untrained CPs. All videotapes were assessed using the I-MSC/MPC scales by one expert speech and language therapist and two trainee speech and language therapists. The Intraclass Correlation Coefficient (ICC) was used to calculate inter- and intra-rater reliability. Correlations between the I-MSC/MPC scales and the aphasia severity, the I-ASHA-FACS, and the Pragmatic Protocol results were calculated by the Spearman’s test. The Mann-Whitney test was used to separate the I-MSC/MPC results obtained by the trained CPs from the untrained CPs.

Outcomes & Results: Inter-rater and intra-rater reliability ICC results were highly significant and strong (ICC > .906, ICC > .978, p < .001, respectively). Significant correlations between the aphasia severity and the I-MSC/MPC scales ranged from moderate to strong (Spearman rho>.487, p < .005). Correlations between the I-MSC and the I-ASHA-FACS domains ranged from moderate to strong (rho >.458, p < .008). Correlation between the I-MPC and the I-ASHA-FACS domains were generally strong (rho > .569, p < .001) while correlations between the I-MSC and the I-ASHA-FACS domains ranged from moderate to strong (rho > .458, p = .008). Pragmatic aspects were shown to be mostly preserved in the PwA. All correlations between the I-MSC/MPC scales and the Pragmatic Protocol were strong (rho >.635, p < .008). The Mann-Whitney test showed significant results for the I-MSC scale (p < .026).

Conclusions: The I-MSC-MPC scales proved to be a valid and reliable instrument to assess the communicative dyad. The I-MSC scale was also used to distinguish trained from untrained CPs. The use of I-MSC-MPC scales is recommended in clinical practice.     

The efficacy of an inter-disciplinary community aphasia group for living well with aphasia

Background: Community aphasia groups (CAGs) are argued to have various benefits for people with chronic aphasia. However, there is a paucity of evidence regarding the feasibility of conducting an interdisciplinary programme with content and outcome measures encompassing ICF domains, making it difficult to ascertain the full potential of this service option. As another key population living with aphasia, family members have received little attention in CAG research to date.

Aim: To determine potential efficacy of a speech-language pathologist- and social worker-led CAG model for four people with aphasia (PWA) and their spouses on living well with aphasia within a proof-of-concept trial.

Methods & Procedures: Informed by extensive study of the existing CAG literature, we developed a comprehensive 12-week interdisciplinary CAG model and trial protocol (the InterD-CAG). We used a Phase I pre-post design with a follow-up phase. The group was co-facilitated by a speech-language pathologist and social worker with support from aide staff. The group met at a university clinic for 2 h per week over 12 consecutive weeks. The protocol comprised a combination of communication therapy; conversation practice; social, peer, and psychological support; stroke and aphasia information; and participation in meaningful and accessible activities. Group session time was split into two formats: (1) concurrent sessions dedicated to members with aphasia alone/spouses alone and (2) mixed sessions with both members with aphasia and spouses together. The Therapeutic Factors Inventory was administered at regular intervals during the programme to ascertain participants’ perceptions of group process. Pre, post, and follow-up outcome measures spanned all WHO ICF domains for PWA, with measures for spouses addressing supported conversation skills, psychological health, and carer burden.

Outcomes & Results: Both PWA and spouses perceived the presence of therapeutic factors to be medium or high by Week 12 in the programme. Our hypotheses for significant improvement for PWA in quality of life, aphasia impairment, activity & participation, and contextual factors were partially supported and maintenance of gains was observed in some cases. No clear changes were evident for spouses.

Conclusions: This study contributes preliminary evidence for the efficacy of the InterD-CAG model for people with chronic aphasia. Larger-scale studies with comparison groups are required to build on the present findings with specific attention to spouse support needs.     

Gavel Club for people with aphasia: communication confidence and quality of communication life

Background: Many factors that contribute to successful living with aphasia intersect with the benefits one can get from attending an aphasia group. Affiliated with Toastmasters International, Gavel Clubs (GCs) for people with aphasia (PWA) provide a range of communication activities that promote public speaking and leadership skills. The constructs of communication confidence and quality of communication life (QCL) were introduced over a decade ago but have not been widely investigated.

Aims: This study aims to investigate the association between weekly participation in GC public speaking activities for PWA and the constructs of QCL and communication confidence. In addition, the study aims to explore the association between the severity of aphasia, QCL and communication confidence.

Methods & Procedures: Eight members of a GC for PWA, who attended 31–33 weekly GC meetings per year between 2012 and 2016, participated in assessments of their QCL (using the ASHA Quality of Communication Life (ASHA QCL)), communication confidence (using the Communication Confidence Rating Scale for Aphasia (CCRSA)), and aphasia severity (using the Western Aphasia Battery-Revised (WAB-R)). A link was sought between severity of aphasia and the constructs of QCL and communication confidence.

Outcomes & Results: QCL improved significantly over four years of participation in the GC (Z = 2.103, n = 8, p = .035, r = .74). Communication confidence also improved significantly (Z = 1.973, p = .049, r = .70). No associations were found between the two scales or between the scales and severity of aphasia.

Conclusions: Weekly participation in GC group activities was associated with improved QCL, as measured by the ASHA QCL, and improved communication confidence as measured by the CCRSA. Decision-making (measured by the CCRSA) and the Roles and Responsibilities domain (in the ASHA QCL) also improved. More research is needed to verify these findings using a study design that includes a control group, to identify the links between the various psychosocial aspects at play in the life of PWA and to conceptualise how the gains achieved with GC participation can be applied more broadly to successful living with aphasia.     

Stroke and aphasia quality of life scale in Kannada-evaluation of reliability,validity and internal consistency

Background:

Quality of life (QoL) dwells in a person''s overall well-being. Recently, QoL measures have become critical and relevant in stroke survivors. Instruments measuring QoL of individuals with aphasia are apparently rare in the Indian context. The present study aimed to develop a Kannada instrument to measure the QoL of people with aphasia. Study objectives were to validate Stroke and aphasia quality of life-39 (SAQOL-39) into Kannada, to measure test–retest reliability and internal consistency.

Materials and Methods:

The original English instrument was modified considering socio-cultural differences among native English and Kannada speakers. Cross-linguistic adaptation of SAQOL-39 into Kannada was carried out through forward–backward translation scheme. The scale was administered on 32 people from Karnataka (a state in India) having aphasia. For a direct understanding of the subject''s QoL, scores were categorized into QoL severity levels. Item reliability of the Kannada version was examined by measuring Cronbach''s alpha. Test–retest reliability was examined by calculating the intraclass correlation coefficient (ICC).

Results:

Kannada SAQOL-39 showed good acceptability with minimum missing data and excellent test–retest reliability (ICC = 0.8). Value of Cronbach''s α observed for four items modified in the original version was 0.9 each and the mean α of all Kannada items was 0.9, demonstrating high internal consistency.

Conclusions:

The present study offers a valid, reliable tool to measure QoL in Kannada-speaking individuals with aphasia. This tool is useful in a cross-center, cross-national comparison of QoL data from people with aphasia. This instrument also permits direct translation into other Indian languages as the items are culturally validated to the Indian population. This study promotes future research using the Kannada SAQOL-39.     

Informal aphasia assessment,interaction and the development of the therapeutic relationship in the early period after stroke

Background: Speech pathologists tend to favour informal assessment over formal, standardised batteries in the acute/sub-acute hospital setting, often using their own local screening tools, subtests or non-standardised assessments. Despite the tendency to use informal assessment measures, little research has been done on what might characterise informality in assessment.

Aims: Using a systemic functional linguistics framework and thematic analysis of interview data, the aims of this study were to explore interactions during informal assessment, the balance of clinician-centred and client-centred interactions during sessions and their impact on the development of the therapeutic relationship.

Methods and Procedures: This small study sought to capture authentic initial and review informal assessment sessions and involved three men with aphasia (74 years/3 weeks post; 48 years/6 weeks post; 80 years/4 days post), who happened to be on the caseload of a single therapist at the time of the study. Inclusion criteria were the ability to provide consent (with communication support if necessary), to be inpatients within the first 12 weeks post-stroke, with no psychiatric history or dementia. Videos of three aphasia assessment sessions were collected, with recorded reflective interviews with the therapist, and two of the patients, following each one. Assessment sessions were transcribed and then analysed in full for their speech function moves. Both synoptic analysis (quantifying choices per speaker) and dynamic analysis (looking at choices through the exchange) were carried out. The exchanges were also considered in the light of the issues raised in the reflective interviews.

Outcomes and Results: While all the assessment sessions were typically controlled by the therapist and had sections which followed the classic request, response, evaluation type pattern, there were examples of dynamic assessment and of casual conversation including a range of moves to introduce new material and humour. The clinician’s reflections highlighted the need to individualise sessions, integrate assessment and therapy, and reveal competence and areas of retained ability.

Conclusions: This work highlights the importance of distinguishing between informal assessment measures/tools and informal assessment interaction. It shows the efforts both therapists and patients make to normalise or casualise their interactions within the potentially awkward context of testing, and has implications for how to make the best therapeutic use of the time spent in early aphasia assessment. The tendency to use informal assessments along with informality in exchanges reflects relationship building required for therapy.     

A short history of the Veterans Administration's influence on aphasia assessment tools

Background: The United States Veterans Administration (VA) has a long history of supporting medical developments, including those in the rehabilitation sciences. Its large patient population, numerous facilities, and funding of research, education, and training have resulted in many medical advances. Its positive influences also have extended to the profession of speech‐language pathology, particularly regarding the assessment and treatment of aphasia.

Aims: This paper is a short review of how the VA has contributed significantly to the development of aphasia assessment tools. Beginning with the Minnesota Test for Differential Diagnosis of Aphasia in 1948, the VA has played an essential role in the creation of a number of well‐known, widely used aphasia tests.

Methods & Procedures: Ten major aphasia assessment tools that had significant VA involvement are examined. The features of each test are described, as well as how the VA contributed to the test's development.

Conclusions: VA's substantial support was an essential part in the development of these important aphasia assessment tools.     

Modified Berg Balance Scale: making assessment appropriate for people with aphasia

Abstract

Objective:

Modifying assessments for people with aphasia has the potential to increase the validity of healthcare assessments across professional domains. This pilot study addressed the challenges of giving people with aphasia the power to fully participate in the assessment process. The study aimed to investigate the feasibility of using an aphasia-modified version of the Berg Balance Scale (BBS), a physical therapy assessment tool to quantify dynamic sitting and standing balance.

Method:

The study compared how people with aphasia performed on the original BBS to an aphasia-modified version (MBBS), created for this study. We examined the relationship between auditory comprehension scores and balance performance of 15 participants with chronic aphasia and three control participants. We tested the hypothesis that individuals with aphasia would perform higher on the MBBS rather than the BBS, thus more closely approaching a score reflective of their true physical abilities.

Results:

Overall people with aphasia performed significantly better on the MBBS than the BBS, indicating that at least some portion of their performance difficulty was likely due to poor auditory comprehension of test instructions rather than true balance difficulty.

Conclusion:

Implications of this study suggest that modifying assessments, such as the BBS, by reducing linguistic complexity and adding visual and written cues along with modeling and repetition has the potential to increase the validity of healthcare assessments for individuals with aphasia.     

A concise patient reported outcome measure for people with aphasia: the aphasia impact questionnaire 21

Background: There are many validated and widely used assessments within aphasiology. Few, however, describe language and life with aphasia from the perspective of the person with aphasia. Across healthcare, patient experience and user involvement are increasingly acknowledged as fundamental to person-centred care. As part of this movement, Patient Reported Outcome Measures (PROMs) are being used in service evaluation and planning.

Aims: This paper reports the quantitative aspects of a mixed methods study that developed and validated a concise PROM, the Aphasia Impact Questionnaire (AIQ), co-produced with People with Aphasia (PWA).

Methods & Procedures: The AIQ was developed within the social model of disability and all stages of the development of the AIQ were performed in partnership with PWA. It was adapted from a pre-existing and lengthier PROM for PWA, the Communication Disability Profile. The first iterations of the AIQ focused on domains of communication, participation and well-being/emotional state. Subsequently the AIQ was extended to include additional items relating to reading and writing (AIQ-21). The research design was iterative. Initially, concurrent validity, internal consistency, and sensitivity of the AIQ-prototype were obtained. The AIQ-prototype was modified to become the AIQ-21. Statistical testing with a new group of PWA was performed, investigating internal consistency and concurrent validity of the AIQ-21.

Outcomes & Results: Results for both the AIQ-prototype and AIQ-21 showed statistically significant concurrent validity and good internal consistency. Repeated measurement using the AIQ-prototype demonstrated statistically significant change after PWA accessed a community intervention.

Conclusions: The AIQ-21 is a PROM that has great potential to be one of the core set of aphasia tests for clinical and research use. Results can be used alongside language assessment to enable person-centred goal setting and partnership working for people with aphasia.     

Coping resources in individuals with aphasia

Background: Individuals with aphasia (IWA) may be under considerable stress due to the nature of language impairments and other stroke sequelae. IWA have reported a greater perception of stress compared to neurologically intact individuals, including fewer perceived coping resources to assuage the effects of this stress.

Aims: This study sought to identify which areas of coping resources are perceived to be available or unavailable to IWA in comparison with those with right brain damage (RBD) and neurologically intact individuals.

Methods & Procedures: A total of 31 IWA, 12 individuals with RBD, and 14 neurologically intact individuals completed the Coping Resources Inventory for Stress with a caregiver, spouse, or friend to facilitate comprehension of test items. Subtest scores were compared for group differences.

Outcomes & Results: All three groups perceived similar coping resources in the areas of social support and financial freedom. IWA perceived fewer resources than those with RBD and neurologically intact individuals in the areas of stress monitoring and tension control. Both IWA and those with RBD perceived fewer resources in the area of acceptance.

Conclusions: IWA have retained coping resources in some areas, specifically confidence, social support and financial freedom. Helping IWA use these resources may be an effective way to reduce stress in this population. IWA may also benefit from counselling in coping resources, specifically in the areas of stress monitoring and tension control. Counselling programmes should educate IWA on the chronic nature of aphasia and how acceptance may be a useful coping resource in later stages of recovery.     

汉语失语症计算机辅助流利性检测的研究

目的研究基于计算机模糊智能识别运算的语言障碍诊治仪ZM2．1（简称：语言障碍ZM2．1）对失语流利性检测的效度与信度。方法采用ABC法和语言障碍ZM2．1两种方法分别对58例失语症患者进行流利性检测，两种方法检测间隔时间在3d之内。结果ABC法流利性内部一致性检验，整体克朗巴赫α系数（Cronbach α）=0．8732；语言障碍ZM2．1平均语速和ABC法流利性总分有正相关性趋势，Spearman系数为0．721（P〈0．01）；语言障碍ZM2．1检测流利性的准确度为81％（以XABC法为标准）；测得两者流利性结果一致性良好（P〈0．01）。结论语言障碍ZM2．1在评价失语症流利性方面具有良好的信度和效度，可用于临床进行失语症的流利性检测。     

The evidence for a life-coaching approach to aphasia

Background: A life-coaching and positive psychology approach to aphasia has recently been advocated by Audrey Holland, to whom this issue is dedicated.

Aims: This paper reviews our recent research which informs the three basic assumptions behind a life-coaching approach to aphasia: (1) learning to live successfully with aphasia takes time; (2) aphasia is a family problem; and (3) the goal is to help people with aphasia fit it into their lives.

Methods & Procedures: We assimilate results from three independent qualitative data sets: (1) a project that sought the perspective of 50 people with aphasia, their families, and their treating speech-language pathologist about their goals over time; (2) a project that seeks the views of 25 people with aphasia, their family, and speech-language pathologists about what it means to live successfully with aphasia; and (3) a qualitative structured interview on quality of life with 30 people with aphasia.

Outcomes & Results: The three basic assumptions of the life-coaching approach to aphasia are supported and extended by the data. Participants with aphasia in our studies report how their goals change over time to reflect how they are learning to live with aphasia, but the journey is different for each person. The stories from families elucidate how aphasia is indeed a family concern and requires family involvement. Finally, not only did participants in our studies fit aphasia into their lives, but they also fitted it into a new lifestyle after their stroke.

Conclusions: The assumptions behind the life-coaching approach are well supported by the narratives of people living with aphasia. Even if the life-coaching approach is not adopted wholeheartedly by the profession, the principles of positive psychology and the life goal perspective appear highly relevant to living successfully with aphasia.