Developing consensus-based clinical competencies to guide stroke clinicians in the implementation of psychological care in aphasia rehabilitation.

Background People with aphasia experience depression and anxiety associated with negative outcomes across a range of time post-stroke. Stroke clinicians are well-positioned to facilitate low-intensity psychotherapeutic interventions after aphasia (e.g. mood screening, behavioural activation, problem-solving therapy, relaxation therapy); however, they self-report a lack of knowledge, skills and confidence to do so. The Theoretical Domains Framework (TDF) provides a lens through which to view and target clinician behaviours and training needs in this area of practice. The aim of this study was to develop and gain consensus on items for a rating scale of clinical competencies in facilitating individual-based, low-intensity psychotherapeutic interventions for people with aphasia. Methods An e-Delphi methodology using focus groups and survey rounds was used to gain consensus on clinical competencies considered important. Results Eight stroke clinicians (speech pathologists and psychologists), two people with aphasia and three family members participated in one of four focus groups. Four themes were derived from the data: (1) Communication support, (2) Assessment and therapy structure, (3) Interpersonal skills, and (4) Needs of the significant other (family or friend). Themes informed an initial list of 23 self-rated and observer-rated competency items. Following two rounds of e-Delphi surveys, 11 stroke clinicians (six speech pathologists and five psychologists) reached consensus (80-100%) for 19 competencies. Conclusions The Psychological Care in Aphasia Rehabilitation Competency scale offers a preliminary list of items to guide and train clinicians to implement low-intensity psychotherapeutic interventions for people with aphasia.

Invaluable Benefits of 10 Years of the International Collaboration of Aphasia Trialists (CATs).

Aphasia research has traditionally been considered a (unidisciplinary) niche topic in medical science. The international Collaboration of Aphasia Trialists (CATs) is a global collaboration of multidisciplinary aphasia researchers. Over the past 10 years, CATs has collectively taken a rigorous approach to systematically address persistent challenges to aphasia research quality. This article summarizes the achievements over the past decade. CATs' achievements include: standardizing terminology, advancing aphasia research design by aphasia expert consensus recommendations, developing a core data set and intervention descriptors, facilitating the involvement of people with the language impairment aphasia in the research process, translating, and adapting assessment tools into global languages, encouraging data sharing, developing innovative secondary data analysis methodologies and promoting the transparency and accessibility of high quality aphasia research reports. CATs' educational and scientific achievements over the past 10 years far exceed what individual researchers in the field could have ever achieved.

Comprehensive quality assessment for aphasia rehabilitation after stroke: protocol for a multicentre, mixed-methods study.

INTRODUCTION: People with aphasia following stroke experience disproportionally poor outcomes, yet there is no comprehensive approach to measuring the quality of aphasia services. The Meaningful Evaluation of Aphasia SeRvicES (MEASuRES) minimum dataset was developed in partnership with people with lived experience of aphasia, clinicians and researchers to address this gap. It comprises sociodemographic characteristics, quality indicators, treatment descriptors and outcome measurement instruments. We present a protocol to pilot the MEASuRES minimum dataset in clinical practice, describe the factors that hinder or support implementation and determine meaningful thresholds of clinical change for core outcome measurement instruments. METHODS AND ANALYSIS: This research aims to deliver a comprehensive quality assessment toolkit for poststroke aphasia services in four studies. A multicentre pilot study (study 1) will test the administration of the MEASuRES minimum dataset within five Australian health services. An embedded mixed-methods process evaluation (study 2) will evaluate the performance of the minimum dataset and explore its clinical applicability. A consensus study (study 3) will establish consumer-informed thresholds of meaningful change on core aphasia outcome constructs, which will then be used to establish minimal important change values for corresponding core outcome measurement instruments (study 4). ETHICS AND DISSEMINATION: Studies 1 and 2 have been registered with the Australian and New Zealand Clinical Trial Registry (ACTRN12623001313628). Ethics approval has been obtained from the Royal Brisbane and Women's Hospital (HREC/2023/MNHB/95293) and The University of Queensland (2022/HE001946 and 2023/HE001175). Study findings will be disseminated through peer-reviewed publications, conference presentations and engagement with relevant stakeholders including healthcare providers, policy-makers, stroke and rehabilitation audit and clinical quality registry custodians, consumer support organisations, and individuals with aphasia and their families.

Towards a core outcome set for dysarthria after stroke: What should we measure?

OBJECTIVE: To identify and agree on what outcome domains should be measured in research and clinical practice when working with stroke survivors who have dysarthria. DESIGN: Delphi process, two rounds of an online survey followed by two online consensus meetings. SETTING: UK and Australia. PARTICIPANTS: Stroke survivors with experience of dysarthria, speech and language therapists/pathologists working in stroke and communication researchers. METHODS: Initial list of outcome domains generated from existing literature and with our patient and public involvement group to develop the survey. Participants completed two rounds of this survey to rate importance. Outcomes were identified as 'in', 'unclear' or 'out' from the second survey. All participants were invited to two consensus meetings to discuss these results followed by voting to identify critically important outcome domains for a future Core Outcome Set. All outcomes were voted on in the consensus meetings and included if 70% of meeting participants voted 'yes' for critically important. RESULTS: In total, 148 surveys were fully completed, and 28 participants attended the consensus meetings. A core outcome set for dysarthria after stroke should include four outcome domains: (a) intelligibility of speech, (b) ability to participate in conversations, (c) living well with dysarthria, (d) skills and knowledge of communication partners (where relevant). CONCLUSIONS: We describe the consensus of 'what' speech outcomes after stroke are valued by all stakeholders including those with lived experience. We share these findings to encourage the measurement of these domains in clinical practice and research and for future research to identify 'how' best to measure these outcomes.

Does aphasia impact on return to driving after stroke? A scoping review.

PURPOSE: Stroke can affect driving, an important activity of daily living. Little is known about whether aphasia (language impairment) impacts driving post-stroke. This scoping review explores impacts and perceived impacts of aphasia on driving performance, and the process of returning to driving post-stroke. MATERIALS AND METHODS: Scoping review using Arksey and O'Malley's framework, reported using the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Bibliographic databases were searched and international clinical practice guidelines were sourced online. Full-text articles were independently assessed by two reviewers. Results were tabulated and summarised using narrative synthesis. RESULTS: Forty-three literature sources and 17 clinical practice guidelines were identified. Six studies investigated return to driving with aphasia post-stroke; 37 sources from the broader literature contributed to objectives. It remains unclear whether aphasia impacts fitness-to-drive; however, people with aphasia face barriers in returning to driving due to: (1) uncertainty regarding the role of language in driving; (2) poor awareness and knowledge of aphasia, and (3) communication demands in the patient-journey and assessment. CONCLUSIONS: The current evidence base is limited, inconsistent, and lacking in quality and recency and there is a lack of guidelines to support clinical practice. People with aphasia face barriers in returning to driving; however, it is unclear if aphasia affects fitness-to-drive post-stroke. Implications for rehabilitationPeople with aphasia, their caregivers and clinicians have identified return to driving as a top 10 research priority.We do not know if aphasia affects fitness-to-drive post-stroke, but communication difficulties can make the process of returning to driving more difficult.Speech pathologists have an important role in ensuring that driving is discussed with people with aphasia post-stroke.Speech pathologists should support the multidisciplinary team to understand and meet the communication needs of people with aphasia throughout the driving evaluation process.

Is communication key in stroke rehabilitation and recovery? National linked stroke data study.

BACKGROUND: Information on the characteristics or long-term outcomes of people with communication support needs post-stroke is limited. We investigated associations between communication gains in rehabilitation and long-term outcomes (quality-of-life [EuroQOL-ED-3 L], mortality) by post-stroke communication support need status. METHODS: Retrospective cohort study using person-level linked data from the Australian Stroke Clinical Registry and the Australasian Rehabilitation Outcomes Centre (2014-2017). Communication support needs were assessed using the Functional Independence Measure™ comprehension and expression items recorded on admission indicated by scores one (total assistance) to five (standby prompting). Multivariable multilevel and Cox regression models were used to determine associations with long-term outcomes. RESULTS: Of 8,394 patients who received in-patient rehabilitation after stroke (42% female, median age 75.6 years), two-thirds had post-stroke communication support needs. Having aphasia (odds ratio [OR] 4.34, 95% CI 3.67-5.14), being aged ≥65 years (OR 1.21, 95% CI 1.08-1.36), greater stroke severity (unable to walk on admission; OR 1.48, 95% CI 1.32-1.68) and previous stroke (OR 1.25, 95% CI 1.11-1.41) were associated with increased likelihoods of having communication support needs. One-point improvement in FIM™ expression was associated with reduced likelihood of self-reporting problems related to mobility (OR 0.85, 95% CI: 0.80-0.90), self-care (OR 0.79, 95% CI: 0.74-0.86) or usual activities (OR 0.84, 95% CI: 0.75-0.94) at 90-180 days. Patients with communication support needs had greater mortality rates within one-year post-stroke (adjusted hazard ratio 1.99, 95% CI: 1.65-2.39). CONCLUSIONS: Two-thirds of patients with stroke require communication support to participate in healthcare activities. Establishing communication-accessible stroke care environments is a priority.

Do social determinants influence post-stroke aphasia outcomes? A scoping review.

PURPOSE: To conduct a scoping review on five individual social determinants of health (SDOHs): gender, education, ethnicity, socioeconomic status, and social support, in relation to post-stroke aphasia outcomes. MATERIALS AND METHODS: A comprehensive search across five databases was conducted in 2020 and updated in 2022. Twenty-five studies (3363 participants) met the inclusion criteria. Data on SDOHs and aphasia outcomes were extracted and analysed descriptively. RESULTS: Twenty studies provide information on SDOH and aphasia recovery outcomes. Five studies provide insights on SDOH and response to aphasia intervention. Research on SDOH and aphasia recovery has predominantly focussed solely on language outcomes (14 studies), with less research on the role of SDOH on activity, participation, and quality of life outcomes (6 studies). There is no evidence to support a role for gender or education on language outcomes in the first 3 months post stroke. SDOHs may influence aphasia outcomes at or beyond 12 months post onset. CONCLUSIONS: Research on SDOHs and aphasia outcomes is in its infancy. Given SDOHs are modifiable and operate over a lifetime, and aphasia is a chronic condition, there is a pressing need to understand the role of SDOHs on aphasia outcomes in the long term.Implications for rehabilitationResearch on the role of Social Determinants of Health (SDoH) and aphasia outcomes is in its infancy.The role of SDoHs has been mainly investigated in relation to language outcomes.Little is known about the SDoHs on activity, participation, and quality of life outcomes.Rehabilitation professionals should consider the potential influence of individual SDoHs such as gender, education, socioeconomic status, ethnicity, and social support on a person's access to aphasia services and aphasia outcomes long term.

The Excess Costs of Hospitalization for Acute Stroke in People With Communication Impairment: A Stroke123 Data Linkage Substudy.

OBJECTIVE: To describe the costs of hospital care for acute stroke for patients with aphasia or dysarthria. DESIGN: Observational study from the Stroke123 project. SETTING: Data from patients admitted with stroke (2009-2013) from 22 hospitals in Queensland participating in the Australian Stroke Clinical Registry (AuSCR) were linked to administrative datasets. PARTICIPANTS: Communication impairments were identified using International Classification of Diseases, 10th Revision, Australian Modification codes. Overall, 1043 of 4195 (25%) patients were identified with aphasia (49% were women; median age 78 years; 83% with ischemic stroke), and 1005 (24%) with dysarthria (42% were women; median age 76 years; 85% with ischemic stroke). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Linked patient-level, hospital clinical costing related to the stroke, were adjusted to 2013/2014 Australian dollars (AU$, US$ conversion x 0.691) using recommended national price indices and multivariable regression analysis with clustering by hospital performed. RESULTS: Compared with patients without aphasia, the median hospital costs/patient were greater for those with aphasia for medical (aphasia AU$2273 vs AU$1727, P<.001), nursing (aphasia AU$3829 vs AU$2748, P<.001) and allied health services (aphasia AU$1138 vs AU$720, P<.001). Similarly, costs were greater for patients with dysarthria compared with those without dysarthria. Adjusted median total costs were AU$2882 greater for patients with aphasia compared with patients without aphasia (95% confidence interval, AU$1880-3884), and AU$843 greater for patients with dysarthria compared with those without dysarthria (95% confidence interval, AU$-301 to 1987). CONCLUSIONS: People with communication impairment after stroke incur greater hospital costs, in particular for medical, allied health, and nursing resources.

An updated systematic review of stroke clinical practice guidelines to inform aphasia management.

BACKGROUND: Aphasia is a common consequence of stroke, and people who live with this condition experience poor outcomes. Adherence to clinical practice guidelines can promote high-quality service delivery and optimize patient outcomes. However, there are currently no high-quality guidelines specific to post-stroke aphasia management. AIMS: To identify and evaluate recommendations from high-quality stroke guidelines that can inform aphasia management. SUMMARY OF REVIEW: We conducted an updated systematic review in accordance with PRISMA guidelines to identify high-quality clinical guidelines published between January 2015 and October 2022. Primary searches were performed using electronic databases: PubMed, EMBASE, CINAHL, and Web of Science. Gray literature searches were conducted using Google Scholar, guideline databases, and stroke websites. Clinical practice guidelines were evaluated using the Appraisal of Guidelines and Research and Evaluation (AGREE II) tool. Recommendations were extracted from high-quality guidelines (scored > 66.7% on Domain 3: "Rigor of Development"), classified as aphasia-specific or aphasia-related, and categorized into clinical practice areas. Evidence ratings and source citations were assessed, and similar recommendations were grouped. Twenty-three stroke clinical practice guidelines were identified and 9 (39%) met our criteria for rigor of development. From these guidelines, 82 recommendations for aphasia management were extracted: 31 were aphasia-specific, 51 aphasia-related, 67 evidence-based, and 15 consensus-based. CONCLUSION: More than half of stroke clinical practice guidelines identified did not meet our criteria for rigorous development. We identified 9 high-quality guidelines and 82 recommendations to inform aphasia management. Most recommendations were aphasia-related; aphasia-specific recommendation gaps were identified in three clinical practice areas: "accessing community supports," "return to work, leisure, driving," and "interprofessional practice."

What is 'successful rehabilitation'? A multi-stakeholder nominal group technique study to inform rehabilitation outcome measurement.

OBJECTIVE: To explore how stakeholders in rehabilitation conceptualise 'successful rehabilitation', to inform the development of a minimum dataset and core outcomes for sub-acute rehabilitation. DESIGN: Qualitative consensus study using the nominal group technique. SETTING: Online focus groups. PARTICIPANTS: Consumer representatives (n = 7), clinicians (n = 15), and health service managers (n = 9) from Australia. INTERVENTION: Participants responded to the question, 'What does successful rehabilitation look like?'. Following item generation, they prioritised their top five responses, allocating 100 points across items to denote relative importance. MAIN MEASURES: Prioritised responses were analysed across stakeholder groups using qualitative content analysis. RESULTS: Ten themes were identified. 'Successful rehabilitation' is: (1) person and family centred; (2) effective; (3) inter-professional; (4) accessible; (5) goal oriented with meaningful outcomes; (6) connected to the continuum of care; (7) evidence-based and supportive of innovation and research; (8) appropriately funded and skilled; (9) satisfying and engaging; and (10) safe. CONCLUSIONS: Stakeholder-defined 'successful rehabilitation' aligned with principles of value-based care and evidence-based rehabilitation. Provision and receipt of person and family centred care was the most important indicator of successful rehabilitation. Measures of success should include indicators of structure, process, outcome, and experience, and be conducted at multiple time-points.

"There are endless areas that they can use it for": speech-language pathologist perspectives of technology support for aphasia self-management.

BACKGROUND: Aphasia is a debilitating acquired language disorder that often persists as a chronic condition. However, long-term support options are scarce, necessitating the consideration of alternative approaches. Chronic condition self-management approaches, which aim to build self-efficacy and empower people to take responsibility for the day-to-day management of their health condition, may benefit people with aphasia (PwA). Technology is widely used in chronic condition self-management and investigation is required to determine whether it could play a role in aphasia self-management. OBJECTIVE: This study aimed to explore speech-language pathologist (SLP) perspectives on the potential use of technology to support aphasia self-management. METHODS: A qualitative study was conducted with 15 SLPs using semi-structured interviews. Qualitative content analysis was applied to verbatim transcripts to identify codes, categories, and sub-themes which were developed into themes. RESULTS: Three themes were identified: (1) technology supports holistic aphasia self-management by providing additional avenues for service delivery, overall communication, and learning opportunities thus enhancing independence and life participation; (2) SLP and communication partner (CP) assistance can support PwA to use technology for aphasia self-management; (3) considerations and potential barriers to PwA use of technology for aphasia self-management. CONCLUSIONS: Technology can support aphasia self-management by expanding service delivery options, allowing for increased frequency and intensity of therapy practise, and facilitating communication and participation. Personal, professional, and organizational barriers should be addressed in the development of technology-enabled aphasia self-management approaches. SLPs and CPs can offer PwA assistance with technology but may themselves need additional support. Solutions for identified barriers should be considered, such as providing training in the use of technology and implementing aphasia-friendly modifications.IMPLICATIONS FOR REHABILITATIONSelf-management approaches are being explored in the area of aphasia management as a means of offering a holistic, sustainable intervention option that meets the long-term needs of people with aphasia.A range of technology-based resources are currently used in chronic condition self-management and in aphasia therapy, and there are many possibilities for the use of technology in aphasia self-management approaches.Speech-language pathologists identified that technology could facilitate aphasia self-management by expanding service delivery options (e.g., real-time and asynchronous telepractice), enabling increased frequency and intensity of therapy through providing a means of independent practise, offering options for augmentative alternative communication, and enhancing life participation by supporting social communication and daily tasks.,Speech-language pathologists are interested in using technology for aphasia self-management; however, barriers related to organizational policies, individual experience and confidence using technology, and technology itself must be addressed.

"Self-management has to be the way of the future": Exploring the perspectives of speech-language pathologists who work with people with aphasia.

PURPOSE: Healthcare models have incorporated self-management approaches to facilitate increased patient responsibility for chronic condition management. As aphasia is a chronic condition, self-management may be beneficial for people with aphasia; however, the possible impacts of the language disorder on self-management must be acknowledged and addressed. Speech-language pathologists would likely be principal providers of self-management support; therefore, their perspectives should be sought when considering development of aphasia self-management approaches. This study aims to explore speech-language pathologist perspectives of aphasia self-management. METHOD: In-depth, semi-structured interviews conducted with 15 speech-language pathologists in Australia. Interview data analysed using qualitative content analysis. RESULT: Aphasia self-management was viewed as a person- and family-centred approach enabling comprehensive long-term care for people with aphasia and promoting control, responsibility, and independence. Speech-language pathologists were seen to have a substantial role providing self-management support and consultation, and training was required to expand this role. Communication partners and peer support were highly valued. Personal and environmental factors may influence successful aphasia self-management. Differences between aphasia self-management and chronic condition self-management were considered. CONCLUSION: Self-management could facilitate long-term sustainable aphasia management. Aphasia self-management approaches should factor in how to maximise communication partner and peer support. Aphasia-friendly self-management resources are necessary.

Prognostication in post-stroke aphasia: Perspectives of people with aphasia on receiving information about recovery.

Many people with aphasia (language impairment post-stroke) want to know their prognosis for recovery, yet current understanding of their experience of receiving prognoses is limited. Such insight is necessary to inform clinical practice in formulating and delivering aphasia prognoses, especially given the psycho-emotional distress and secondary adverse effects on recovery associated with conversations about prognosis. We sought an in-depth understanding of the perspectives of people with aphasia in relation to receiving prognoses post-stroke, with the aim of informing an evidence-based approach to aphasia prognostication in clinical practice. Semi-structured interviews, facilitated by communication support strategies, were conducted one-to-one with eight people with aphasia (ranging from mild to very severe) 3-12 months post-stroke. Reflexive thematic analysis was used to analyse the qualitative data, yielding two over-arching themes: (1) How would you know without knowing me?; (2) I need to know, but I don't want to know. Our findings illustrate issues of mistrust within the patient-clinician relationship, and complex emotions relating to hope and post-stroke adjustment. The present insight into the lived experience of receiving aphasia prognoses highlights the need for focused consideration of personal definitions of normalcy, measures for fostering trust, and the role of prognostic uncertainty.

Establishing reporting standards for participant characteristics in post-stroke aphasia research: An international e-Delphi exercise and consensus meeting.

OBJECTIVE: To establish international, multidisciplinary expert consensus on minimum participant characteristic reporting standards in aphasia research (DESCRIBE project). METHODS: An international, three-round e-Delphi exercise and consensus meeting, involving multidisciplinary researchers, clinicians and journal editors working academically or clinically in the field of aphasia. RESULTS: Round 1 of the DESCRIBE e-Delphi exercise (n = 156) generated 113 items, 20 of which reached consensus by round 3. The final consensus meeting (n = 19 participants) established DESCRIBE's 14 participant characteristics that should be reported in aphasia studies: age; years of education; biological sex; language of treatment/testing; primary language; languages used; history of condition(s) known to impact communication/cognition; history of previous stroke; lesion hemisphere; time since onset of aphasia; conditions arising from the neurological event; and, for communication partner participants, age, biological sex and relationship to person with aphasia. Each characteristic has been defined and matched with standard response options to enable consistent reporting. CONCLUSION: Aphasia research studies should report the 14 DESCRIBE participant characteristics as a minimum. Consistent adherence to the DESCRIBE minimum reporting standard will reduce research wastage and facilitate evidence-based aphasia management by enabling replication and collation of research findings, and translation of evidence into practice.

Measuring communication as a core outcome in aphasia trials: Results of the ROMA-2 international core outcome set development meeting.

BACKGROUND: Evidence-based recommendations for a core outcome set (COS; minimum set of outcomes) for aphasia treatment research have been developed (the Research Outcome Measurement in Aphasia-ROMA, COS). Five recommended core outcome constructs: communication, language, quality of life, emotional well-being and patient-reported satisfaction/impact of treatment, were identified through three international consensus studies. Constructs were paired with outcome measurement instruments (OMIs) during an international consensus meeting (ROMA-1). Before the current study (ROMA-2), agreement had not been reached on OMIs for the constructs of communication or patient-reported satisfaction/impact of treatment. AIM: To establish consensus on a communication OMI for inclusion in the ROMA COS. METHODS & PROCEDURES: Research methods were based on recommendations from the Core Outcome Measures in Effectiveness Trials (COMET) Initiative. Participants with expertise in design and conduct of aphasia trials, measurement instrument development/testing and/or communication outcome measurement were recruited through an open call. Before the consensus meeting, participants agreed on a definition of communication, identified appropriate OMIs, extracted their measurement properties and established criteria for their quality assessment. During the consensus meeting they short-listed OMIs and participants without conflicts of interest voted on the two most highly ranked instruments. Consensus was defined a priori as agreement by ≥ 70% of participants. OUTCOMES & RESULTS: In total, 40 researchers from nine countries participated in ROMA-2 (including four facilitators and three-panel members who participated in pre-meeting activities only). A total of 20 OMIs were identified and evaluated. Eight short-listed communication measures were further evaluated for their measurement properties and ranked. Participants in the consensus meeting (n = 33) who did not have conflicts of interest (n = 29) voted on the top two ranked OMIs: The Scenario Test (TST) and the Communication Activities of Daily Living-3 (CADL-3). TST received 72% (n = 21) of 'yes' votes and the CADL-3 received 28% (n = 8) of 'yes' votes. CONCLUSIONS & IMPLICATIONS: Consensus was achieved that TST was the preferred communication OMI for inclusion in the ROMA COS. It is currently available in the original Dutch version and has been adapted into English, German and Greek. Further consideration must be given to the best way to measure communication in people with mild aphasia. Development of a patient-reported measure for satisfaction with/impact of treatment and multilingual versions of all OMIs of the COS is still required. Implementation of the ROMA COS would improve research outcome measurement and the quality, relevance, transparency, replicability and efficiency of aphasia treatment research. WHAT THIS PAPER ADDS: What is already known on this subject International consensus has been reached on five core constructs to be routinely measured in aphasia treatment studies. International consensus has also been established for OMIs for the three constructs of language, quality of life and emotional well-being. Before this study, OMIs for the constructs of communication and patient-reported satisfaction/impact of treatment were not established. What this paper adds to existing knowledge We gained international consensus on an OMI for the construct of communication. TST is recommended for inclusion in the ROMA COS for routine use in aphasia treatment research. What are the potential or actual clinical implications of this work? The ROMA COS recommends OMIs for a minimum set of outcomes for adults with post-stroke aphasia within phases I-IV aphasia treatment research. Although not intended for clinical use, clinicians may employ the instruments of the ROMA COS, considering the quality of their measurement properties. The systematic inclusion of a measure of communication, such as TST, in clinical practice could ultimately support the implementation of research evidence and best practices.

Putting "the broken bits together": A qualitative exploration of the impact of communication changes in dementia.

INTRODUCTION: Communication is an area of health and functioning that is profoundly affected by dementia. While it is known that people living with dementia and their care partners experience disruptions to daily activities and social engagement, detailed knowledge about the lived impact of dementia-related communication changes is lacking. This study sought an in-depth understanding of the lived experience of dementia-related communication changes and the associated impact, needs, and strategies. METHODS: As part of an overarching participatory design study, a qualitative (interpretive description) exploration was undertaken with people living with dementia and their care partners. Data from semi-structured interviews were analysed using thematic analysis. RESULTS: We interviewed 13 people living with dementia and 21 care partners and drew three themes and 10 subthemes from the interviews. The first theme illustrates how dementia changes communication which in turn changes life; the second captures the impact of changes on people living with dementia and care partners emotionally and in the context of relationships; and the third describes some positive and constructive ways of moving forward with dementia-related communication changes. CONCLUSIONS: Interventions to enhance function, participation, and wellbeing for people living with dementia and their care partners need to encompass support for communication changes. There is a need to ensure that people living with dementia feel dignified and respected during communication, and that care partners and inclusive communities are educated, trained, and supported to facilitate communication.

Exploring the measurement of pediatric cognitive-communication disorders in traumatic brain injury research: A scoping review.

OBJECTIVE: To synthesize information about the constructs measured, measurement instruments used, and the timing of assessment of cognitive-communication disorders (CCDs) in pediatric traumatic brain injury (TBI) research. METHODS AND PROCEDURES: Scoping review conducted in alignment with Arksey and O'Malley's five-stage methodological framework and reported per the PRISMA extension for Scoping Reviews. Inclusion criteria: (a) cohort description, case-control, and treatment studies; (b) participants with TBI aged 5-18 years; (c) communication or psychosocial outcomes; and (d) English full-text journal articles. The first author reviewed all titles, abstracts, and full-text articles; 10% were independently reviewed. OUTCOMES AND RESULTS: Following screening, a total of 687 articles were included and 919 measurement instruments, measuring 2134 unique constructs, were extracted. The Child Behavior Checklist was the most used measurement instrument and 'Global Outcomes/Recovery' was the construct most frequently measured. The length of longitudinal monitoring ranged between ≤3 months and 16 years. CONCLUSIONS AND IMPLICATIONS: We found considerable heterogeneity in the constructs measured, the measurement instruments used, and the timing of CCD assessment in pediatric TBI research. A consistent approach to measurement may support clinical decision-making and the efficient use of data beyond individual studies in systematic reviews and meta-analyses.

Phenology of the transcriptome coincides with the physiology of double-crested cormorant embryonic development.

The rigorous timing of the dynamic transcriptome within the embryo has to be well orchestrated for normal development. Identifying the phenology of the transcriptome along with the physiology of embryonic development in birds may suggest periods of increased sensitivity to contaminant exposure depending on the contaminant's mechanism of action. Double-crested cormorants (Nannopterum auritum, formerly Phalacrocorax auritus) are commonly used in ecotoxicological studies, but relatively little is known about their functional transcriptome profile in early development. In this study, we tracked the phenology of the transcriptome during N. auritum embryogenesis. Fresh eggs were collected from a reference site and artificially incubated from collection until four days prior to hatching. Embryos were periodically sampled throughout incubation for a total of seven time points. A custom microarray was designed for cormorants (over 14,000 probes) and used for transcriptome analysis in whole body (days 5, 8) and liver tissue (days 12, 14, 16, 20, 24). Three main developmental periods (early, mid, and late incubation) were identified with differentially expressed genes, gene sets, and pathways within and between each developmental transition. Overall, the timing of differentially expressed genes and enriched pathways corresponded to previously documented changes in morphology, neurology, or physiology during avian embryonic development. Targeted investigation of a subset of genes involved in endogenous and xenobiotic metabolism (e.g., cytochrome P450 cyp1a, cyp1b1, superoxide dismutase 1 sod1) were expressed in a pattern similar to reported endogenous compound levels. These data can provide insights on normal embryonic development in an ecologically relevant species without any environmental contaminant exposure.

Development of a minimum dataset for subacute rehabilitation: a three-round e-Delphi consensus study.

OBJECTIVES: To develop a minimum dataset to be routinely collected across a heterogenous population within a subacute rehabilitation service to guide best care and outcomes for patients, and value for the health service. DESIGN: Three-round e-Delphi exercise, followed by consensus meetings. SETTING: Multicentre study in Brisbane, Australia. PARTICIPANTS: Rehabilitation decision-makers, researchers and clinicians were invited to participate in the e-Delphi exercise. A multidisciplinary project steering committee (rehabilitation decision makers, researchers, clinicians and consumers) participated in consensus meetings. METHODS: In round 1 of the e-Delphi, participants responded to an open-ended question, generating data and outcomes that should be routinely collected in rehabilitation. In rounds 2 and 3, participants rated the importance of collecting each item on a nine-point scale. Consensus was defined a priori, as items rated as 'essential' by at least 70%, and of 'limited importance' by less than 15%, of respondents. Consensus meetings were held to further refine and define the dataset for implementation. RESULTS: In total, 38 participants completed round 1 of the e-Delphi. Qualitative content analysis of their responses generated 1072 codes, which were condensed into 39 categories and 209 subcategories. Following two rounds of rating (round 2: n=32 participants; round 3: n=28 participants), consensus was reached for 124 items. Four consensus meetings (n=14 participants) resulted in the final dataset which included 42 items across six domains: (1) patient demographics, (2) premorbid health and psychosocial information, (3) admission information, (4) service delivery and interventions, (5) outcomes and (6) caregiver information and outcomes. CONCLUSIONS: We identified 42 items that reflect the values and experiences of rehabilitation stakeholders. Items unique to this dataset include caregiver information and outcomes, and detailed service delivery and intervention data. Future research will establish the feasibility of collection in practice.

Prognostication in Poststroke Aphasia: Perspectives of Significant Others of People With Aphasia on Receiving Information About Recovery.

PURPOSE: Knowing what to expect poststroke is important for many significant others of people with aphasia, yet an understanding of their perceptions and preferences in receiving prognostic information is limited. This knowledge is needed to inform the formulation and delivery of aphasia prognoses as conversations about prognosis can be harmful or helpful depending on their alignment with key stakeholder perspectives. Our preliminary study sought insight into the perspectives of significant others of people with aphasia on receiving prognostic information, with an aim toward informing evidence-based practice in aphasia prognostication. METHOD: We interviewed seven significant others of people with aphasia, 3-12 months poststroke. The interviews were semistructured, conducted one-to-one, and analyzed qualitatively using reflexive thematic analysis. RESULTS: Five themes were drawn from the interviews: (a) You don't know what you don't know. (b) Having them alive is the best you can ask for. (c) Recovery in the eye of the beholder. (d) Outcomes don't matter unless they help me help them. (e) It's my prognosis too if I'm living with aphasia. CONCLUSIONS: A significant other's prognosis-related perceptions and preferences are products of their poststroke reality and may inadvertently shape that of the person with aphasia. In order to facilitate recovery, prognostication practices need to consider the needs of significant others both as providers of care and as requiring care themselves for their first-hand experiences of third-party disability.