Are People with Aphasia (PWA) Involved in the Creation of Quality of Life and Aphasia Impact-Related Questionnaires? A Scoping Review
Abstract
:1. Introduction
- (1)
- Preparatory Phase: Setting the agenda and determining the funding resources for the research. Prioritize key topics and questions and work on research preparation such as establishing a steering committee, prepare protocols, reviews, etc.
- (2)
- Execution Phase: Work on study design and procedure, i.e., preparation of consent procedures, development of outcome instruments, study recruitment, data collection, and data analysis.
- (3)
- Translational Phase: Work on dissemination, i.e., development of manuscripts, pamphlets, social media campaign, etc.; implementation of the study, i.e., developing clinical practice guidelines and evaluation, i.e., evaluation of the research process; and future research ideas.
2. Materials and Methods
Extraction of the Data
3. Results
3.1. Involvement of PWA in the Creation of the QoL and AIR-Q
3.2. The Type of Involvement by PWA When Building the Questionnaires
3.3. Tools Pilot Tested on PWA before Publication
3.4. The Occurrence of the Term ‘Involvement’ in the Selected Studies
3.5. Determination of Any Additional Issues That PWA Would Bring to the Creation of QoL and/or AIR-Qs
- (1)
- Tailored research priorities/questions: The consistent involvement of PWA in research will foster the setting of tailored research priorities, themes, and subjects and improve research conduct [65]. Conducting a study on a special interest topic or a common area of concern revealed by PWA will promote realistic research questions, functional outcomes, and promote better living with aphasia. The aim of consistent involvement of PWA in the creation of such tools is to co-produce meaningful knowledge and methodological consistency and to give a voice to PWA who are often excluded from research, especially on topics like QoL, which are very subjective and sensitive to measure. PWA and other laypersons can identify the gaps and help to formulate targeted research questions. The involvement of PWA will also optimize the validity, design, and applicability of the research itself and the effectiveness of the resulting tools [11]. Co-production of evidence that is both scientifically robust and patient-specific oriented is important to appraising healthcare professionals’ and rehabilitation specialists’ practice [66].
- (2)
- Equalizing the power position-shift of power: The consistent involvement of PWA in research groups will promote a balance in power relations, between experts and PWA. With the re-establishment of the patient’s position, from passive receiver of pre-established scientific input/data to the position of the “expert” directly living with condition, researchers create an atmosphere of acceptance [67]. This approach will reveal different layers of understanding of aphasia as a symptom and the aphasic as the person carrying the symptom. Regular involvement of PWA promotes patient centeredness and a focus on specific concerns [67]. Involvement of PWA in qualitative participatory health research will promote a more moral/ethical way to empower PWA in an otherwise expert-dominated endeavor [11].
- (3)
- Endorse result presentations, promote dissemination, and ensure research impact: The consistent involvement of PWA promotes strategies for preventing and handling missing data [66,68]. PWA can contribute to creating reports, outcomes, and research results in a more comprehensible and aphasia-friendly format. This practice ensures data integrity and rigorous analyses. Dissemination of the research results between the stroke community, all involved agencies (stroke support organizations, aphasia associations, patients’ advocates, politicians), and the healthcare rehabilitation specialists’ ecosystem will be easily manifested [69]. The exploration of a research topic of mutual interest to both expert scientists and PWA will strengthen the impact of the research [65,67] in both the scientific society and the community and avoid research waste by funding agencies [68].
- (4)
- Best practice in aphasia research and rehabilitation: The consistent involvement of PWA will enhance quality, relevance, and acceptability to all involved stakeholders [18,64]. This will lead to the development of an evidence base in the field of stroke aphasia rehabilitation that will facilitate more effective synthesis of research protocols in the future. This practice is essential in transforming the healthcare system to be more patient-centered and sustainable [17].
- (5)
- Meeting funders’ demands: The new trend in healthcare research is the obligatory demonstration of the direct involvement of patients and other laypersons in research proposals to ensure civically responsible and moral research [11]. Along with the involvement of PWA, the inclusion of national aphasia associations and stroke support organizations for the dissemination and promoting of the research results ensures the sustainability of the projects. Involvement of PWA in research protocols should be an obligatory requirement in contemporary healthcare research proposals [69].
4. Discussion
4.1. Strengths and Limitations of This Review
4.2. Knowledge Gaps and Future Recommendations
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
Glossary
QoL | Quality of Life |
PWA | People with Aphasia |
AIR-Qs | Aphasia Impact-Related Questionnaires |
ICF | International Classification Functioning framework |
PRISMA-ScR | Preferred Reporting Items for Systematic Reviews and Metanalyses extension for Scoping Reviews |
PPI | Patient and Public Involvement |
NIHR | National Institute of Health Research |
GRIPP | Guidance for Reporting Involvement of Patients and Public |
PCORI | Patient-Centered Outcomes Research Institute |
IHRF | Irish Health Research Forum |
PSUE | Patient and Service User Engagement |
PRISMA-ScR | Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review |
PRO | Patient Reported Outcome |
PROMs | Patient Reported Outcome Measures |
CDP | Communication Disability Profile |
SAQOL-39 | Stroke and Aphasia Quality of Life Scale |
PLALP | Profile of Life Participation After Stroke and Aphasia |
CCRSA | Communication Confidence Rating Scale for Aphasia |
QLQA | Quality of Life Questionnaire for Aphasia |
ALA | Assessment for Living with Aphasia |
ACOM | Aphasia Communication Outcome Measure |
COAST | Communication Outcome After Stroke Scale |
MOSE | Measure of Stroke Environment |
AIQ | Aphasia Impact Questionnaire SLTs: Speech and Language Therapists |
A-FROM | Living with Aphasia: Framework from Outcome Measure |
BDAE | Boston Diagnostic Aphasia Examination |
PICA | Porch Index of Communicative Ability |
SIS | Stroke Impact Scale |
NIHSS | National Institute of Health Stroke Scale |
BOSS | Burden of Stroke Scale |
VASES | Visual Analog Self Esteem Scale |
ASHA FACS | The American Speech-Language-Hearing Association Functional Assessment of Communication Skills for Adults |
SS-QOL | Stroke Specific Quality of Life Scale |
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# | 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 |
# | Tool | Conceptual Framework | Gold Standard Measure |
---|---|---|---|
1 | ALA [44] | A-FROM [48] and the ICF [6] ALA was designed into a priori 4 domains of the ICF (1) Language impairment (2) participation (3) environment (4) personal | A-FROM [48] |
2 | ACOM [45] | ACOM was based on “Functional Communication”, a concept which includes a person’s ability to effectively convey and receive personally relevant messages regardless of modality and to do so in his or her natural environment ACOM was analyzed based on the seven domains of the ICF [6] (1) Community Life (2) Domestic Life (3) Economic Life (4) Education and Work (5) Interpersonal and Leisure (6) Recreational and (7) Self-Care | -Boston Diagnostic Aphasia Examination (BDAE) Severity Scale [49] -PICA (Porch Index of Communicative Ability) [50] -ASHA FACS (The American Speech-Language-Hearing Association Functional Assessment of Communication Skills for Adults; [51]) |
3 | MOSE [8] | ICF based [6]: was designed into a priori domains of the ICF framework | -The Stroke Impact Scale (SIS) version 4.0 [52]—National Institute of Health Stroke Scale (NIHSS) [53] |
4 | AIQ [26] | Social Model of Disability by Byng and Duchan [47] | Burden of Stroke Scale (BOSS) [54] |
# | AIR-Q | Language Assessment Tools | Speech Assessment Tools | Aphasia Severity Definition | Psychosocial Well-Being Assessment | Patient Reported Outcome Measures (PROMs) | Functional Communication Assessment |
---|---|---|---|---|---|---|---|
1 | ALA [44] | WAB [56] | None | Severity Scale of BDAE [49] | BOSS CAPD [55] | VASES [58] SAQOL [38] | None |
2 | ACOM [45] | Arizona Battery for Communication Disorders [62] WAB Revised [57] | Apraxia Battery for Adults-2 [59] Dysarthria Examination Battery [60] | Severity Scale BDAE [49] | GDS [61] | BOSS [53] PICA [50] | ASHA FACS [51] |
3 | MOSE [8] | None | None | BDAE Auditory Compreh. Scale [49] | None | PICA [50] | ASHA FACS [51] |
4 | AIQ [26] | None | None | Severity Scale BDAE [49] | BOSS CAPD [55] | BOSS [53] | None |
# | Tool | Nature of Involvement | Amount of Activity | Contribution of PWA |
---|---|---|---|---|
1 | ALA [44] | Consultation Role | Semi-structured interviews | Item analysis and selection for ALA |
2 | ACOM [45] | Consultants PWA and communication partners | Small groups surveys | Item selection for ACOM |
3 | MOSE [8] | Key informants | Interview sessions | Provided information and experiences during interview sessions |
4 | AIQ [26] | Advisory group, AIQ Development Group, AIQ field testing group, Statistical testing group, item selection panel | One off group (1), one off interviews (1), group meetings (4), one off assessments (2) | Selection of all 21 AIQ items advise on format, content, scoring data provision as research participant |
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Charalambous, M.; Kambanaros, M.; Annoni, J.-M. Are People with Aphasia (PWA) Involved in the Creation of Quality of Life and Aphasia Impact-Related Questionnaires? A Scoping Review. Brain Sci. 2020, 10, 688. https://doi.org/10.3390/brainsci10100688
Charalambous M, Kambanaros M, Annoni J-M. Are People with Aphasia (PWA) Involved in the Creation of Quality of Life and Aphasia Impact-Related Questionnaires? A Scoping Review. Brain Sciences. 2020; 10(10):688. https://doi.org/10.3390/brainsci10100688
Chicago/Turabian StyleCharalambous, Marina, Maria Kambanaros, and Jean-Marie Annoni. 2020. "Are People with Aphasia (PWA) Involved in the Creation of Quality of Life and Aphasia Impact-Related Questionnaires? A Scoping Review" Brain Sciences 10, no. 10: 688. https://doi.org/10.3390/brainsci10100688