Table 1.
Summary table of quality-of-life and aphasia impact-related studies for people with aphasia (PWA) in chronological order.
| # | Author Year of Publication | Country Recruitment Source | Aim (s) | Tool Name and Description | Number of Participants | Time Post Stroke Onset | PWA Included in the Creation of the Tool | Pilot Tested with PWA | Terms Related to Patient Involvement |
|---|---|---|---|---|---|---|---|---|---|
| 1 | Chue et al., 2010 | Australia: The Australian Aphasia Association and the Stroke Association Victoria | To investigate the test–retest reliability and internal consistency of the Activities, Participation, and Emotions sections of the Communication Disability Profile (CDP) | The CDP is an outcome measure that includes aphasia-friendly design features (e.g., pictures, simple wording, key words in bold, picture-rating scales) to support PWA in self-reporting the impact of aphasia on their lives. | n = 16 PWA | Chronic Stage | No | No | No related terms |
| 2 | Manders et al., 2010 | Belgium: Rehabilitation Centers and Hospitals in Belgium | To examine the quality of life (QoL) of people with aphasia and to the influence of variables such as age, time post onset and (degree of) social support on the QoL of aphasic persons. | Stroke and Aphasia Quality of Life Scale (SAQOL-39) is an interview-based psychometric tool for stroke survivors with or without aphasia |
n = 129 n1 = 43 PWA n2 = 43 people with Acquired Brain Injury, no aphasia n3 = 43 healthy controls |
Subacute and Chronic Stage | No | No | No related terms |
| 3 | Wallace, 2010 | United Sates: Referrals from SLT’s, physical therapists, physicians, stroke support groups in Ohio | To obtain authentic information about life participation after stroke and aphasia. | Profile of Life Participation After Stroke and Aphasia (PLALP) is a semi structured, conversational approach to obtain self-reported information about a person’s life participation profile | n = 40 PWA | Chronic Stage | No | No | No related terms |
| 4 | Cherney et al., 2011 | United States: Center for Aphasia Research and Treatment at the Rehabilitation Institute of Chicago | To describe the first phase in the development of the CCRSA. | Communication Confidence Rating Scale for Aphasia (CCRSA)—self rating questionnaire with 10 item visual analog scale | n = 21 PWA Chronic Stage | Chronic Stage | No | No | No related terms |
| 5 | Babbitt et al., 2011 | United States: Variety of settings in Chicago | To report data from the second phase of the project in which the CCRSA was revised to include 10 items. | CCRSA was developed by asking PWA to self-rate their communication confidence. | n = 94 PWA | Chronic Stage | No | No | No related terms |
| 6 | Efstratiadou et al., 2012 | Greece and Cyprus: SLTs and neurologists working for the national health system or in private practice in Greece and Cyprus | To explore the acceptability, test-retest reliability, internal consistency and construct validity of the Greek SAQOL-39g in a stroke population, comprising people with and without aphasia | Stroke and Aphasia Quality of Life Scale (SAQOL-39g) Greek version is an interview-based psychometric tool for stroke survivors with or without aphasia |
n = 86 with stroke n1 = 62 stroke survivors without aphasia n2 = 24 PWA |
Chronic Stage | No | No | No related terms |
| 7 | Rodrigues Leal, 2013 | Portugal: Four speech and language therapy centers | To translate and assess the psychometric properties and reliability of the Portuguese version of the SAQOL-39 in a group of chronic aphasia patients | Stroke and Aphasia Quality of Life Scale (SAQOL-39) is an interview-based psychometric tool for stroke survivors with or without aphasia | n = 33 PWA | Chronic Stage | No | No | No related terms |
| 8 | Spaccavento et al., 2013 | Italy: Italian Aphasia Association in Puglia | To draw up a Quality of Life questionnaire for aphasics (QLQA) focusing particularly on difficulties in interpersonal relationships and on the loss of independence because of language disorders | QLQA I an interview-based psychometric tool. |
n = 183 n1 = 146 PWA n2 = 37 controls |
Chronic Stage | No | No | No related terms |
| 9 | Simmons-Mackie et al., 2014 | Canada: Outpatient services of the Aphasia Institute in Toronto | To assess test-retest reliability, construct validity of the Assessment for Living with Aphasia (ALA) and the ability to discriminate aphasia severity. | ALA is a patient-reported aphasia-friendly pictographic measure assessing aphasia, participation in life situations, environment facilitators and barriers to communication, personal factors, and overall QoL in an interview format appropriate for use with severe aphasia. | n = 101 PWA | Chronic Stage | Yes Via Focus groups n1 = 24 PWA n2 = 21SLTs |
Yes 6 pilots (15-month period) n1 = 48 PWA n2 = 5 SLTs |
Stakeholders |
| 10 | Hula et al., 2015 | United States: The greater metropolitan areas of Minneapolis, Pittsburgh etc., from clinics and hospitals and local stroke support groups, the Healthcare System Audiology and Speech Pathology Research Registry and the Western Pennsylvania Participant Registry of University of Pittsburgh | To investigate the structure and measurement properties of the Aphasia Communication Outcome Measure (ACOM) | The ACOM is a patient reported outcome measure of communicative functioning for persons with aphasia. |
n1 = 329 PWA n2 = 329 associated surrogates |
Chronic Stage | YES | YES n1 = 59 PWA n2 = 61 communication partners |
Patient-Centered Outcomes Research |
| 11 | Kamiya et al., 2015 | Japan: 4 settings: 3 speech and language therapy services and 1 non-profit organization for people with aphasia | To validate the Japanese version of SAQOL-39, designated as SAQOL-39-J, and compare the scores among different types of aphasia | Stroke and Aphasia Quality of Life Scale (SAQOL-39-J) Japanese version, is an interview-based psychometric tool for stroke survivors with or without aphasia | n = 54 PWA | Chronic Stage | No | No | No related terms |
| 12 | Bambini et al., 2016 | Italy: Outpatient services in ambulatory settings and inpatients in the Neurorehabilitation Unit in Pavia | To validate the COAST and Carer COAST scales for the Italian-speaking population; to explore the applicability of the COAST scales to a wider range of people with communication problems not limited to moderate aphasia; to explore the agreement between patient’s and carer’s perspective on communication difficulties, and the effect of severity | The Communication Outcome After Stroke Scale for patients and carers (COAST and Carer (COAST) are scales that are comprised of two components, interactive communication skills and their impact on quality of life, assessed through 20 question items, from the point of view of patient and carer. |
n1 = 30 PWA n2 = 28 carers |
Chronic Stage | No | No | No related terms |
| 13 | Babulal and Connor, 2016 | United States: Stroke Registry of the Cognitive Rehabilitation Research Group at Washington University School of Medicine | To present the development and psychometric properties of a new environmental measure that identifies barriers and facilitators in receptivity, physical environment and communication for post-stroke populations including survivors with aphasia. | The Measure Of Stroke Environment (MOSE): stroke-specific measure of the environment, in an aphasia friendly format, evaluating under-assessed aspects of the environment that contribute to participation limitations in post-stroke survivors. |
n = 43 stroke survivors n1 = 24 PWA n2 = 19 stroke survivors without aphasia |
Chronic Stage | YES n = 5 PWA |
Yes 1st pilot n = 10 PWA 2nd pilot n = 10 PWA n = 10 stroke survivors 3rd pilot n = 10 PWA n = 10 stroke survivors |
PWA participatingin research |
| 14 | Calis et al., 2016 | Turkey: Neurology department of governmental hospital | To translate the SAQOL-39 into the Turkish language (SAQOL-39/TR) and assess its reliability and validity in patients who had aphasia | Stroke and Aphasia Quality of Life Scale (SAQOL-39/TR) Turkish version, is an interview-based psychometric tool for stroke survivors with or without aphasia |
n = 40 PWA n = 22 controls with dysarthria |
Chronic Stage | No | No | No related terms |
| 15 | Guo et al., 2016 | Singapore: Community | 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 | Stroke and Aphasia Quality of Life Scale (SAQOL-39-CSg) Singapore (Mandarin) version, is an interview-based psychometric tool for stroke survivors with or without aphasia |
n = 94 Stroke survivors n = 65 no aphasia n = 29 PWA And n = 78 Stroke survivors n = 55 no aphasia n = 23 PWA |
Subacute phase (3 months) chronic stage (12 months) | No | No | No related terms |
| 16 | van Ewijk et al., 2016 | Netherlands: Six aphasia centers (Almere/Bussum, Drachten, Leeuwarden, Terneuzen, Tilburg and Utrecht). | To adapt the English Stroke and Aphasia Quality of Life—39 item generic stroke scale (SAQOL-39g) into Dutch. To investigate the psychometric properties (acceptability, internal consistency, test–retest reliability and construct validity) of the Dutch version (SAQOL-39NL) | Stroke and Aphasia Quality of Life Scale (SAQOL-39NL) Dutch version, is an interview-based psychometric tool for stroke survivors with or without aphasia | n = 60 PWA | Chronic Stage | No | Yes Pre-test n = 13 PWA Phase II n = 47 PWA Test–retest n = 35 PWA |
No related terms |
| 17 | Swinburn et al., 2018 | United Kingdom: Connect Center London | To report 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) | The AIQ is a subjective, pictorial, self-report questionnaire. It is divided into 3 sections, each containing questions exploring domains of living with aphasia: communication; participation; and well-being/emotional state. | n = 90 PWA | Chronic Stage | Yes | Yes n = 31 PWA |
‘In partnership with PWA’ ‘User Involvement’ ‘PWA Research Partners’ |
| 18 | Qiu et al., 2019 | China: Rehabilitation Medicine Department of the Affiliated Hospital of Sun Yat-sen University and Panyu Central Hospital | To develop a Chinese-version of the Stroke and Aphasia Quality of Life-39 generic version (SAQOL-39g) and evaluate its feasibility, reliability, and validity in Chinese patients with stroke-induced aphasia | SAQOL-39g is an interview-based psychometric tool for stroke survivors with or without aphasia |
n = 84 PWA n = 60 PWA mild/moderate n = 24 PWA severe aphasia n = 82 their proxies |
Chronic Stage | No | Yes Phase one: n = 2 stroke survivors no aphasia n = 2 PWA after stroke n = 2 caregivers Phase two: n = 5 PWA n = 5 stroke survivors no aphasia |
No related terms |
| 19 | Kristinsson and Halldorsdottir, 2020 | Iceland: Local Stroke Support Organization | To translate and adapt the SAQOL-39g into Icelandic and examine its psychometric properties. To gather preliminary information on the health-related quality of life of stroke patients in Iceland | Stroke and Aphasia Quality of Life Scale (SAQOL-39g) is an interview-based psychometric tool for stroke survivors with or without aphasia |
n = 20 stroke survivors n1 = 10 stroke survivors without aphasia n = 10 PWA |
Chronic Stage | No | No | No related terms |
| 20 | Azizbeigi-Boukani et al., 2020 | Iran: Shariati Hospital, a referral center for stroke in Tehran and private Clinics | The aim of this study was to examine the reliability and validity of the Persian version of the SAQOL-39, and to examine the agreement between the self- and proxy-report versions of the scale | Stroke and Aphasia Quality of Life Scale (SAQOL-39) is an interview-based psychometric tool for stroke survivors with or without aphasia | n = 20 stroke survivors | Chronic Stage (n = 20) and Acute stage (n = 10) | No | No | No related terms |