Applications of the R.A.I.S.E. Assessment Framework to Support the Process of Assessment in Primary Progressive Aphasia.

PURPOSE: To establish the extent to which person-centered processes are integrated in assessment procedures, the Relationship, Assessment, Inclusion, Support, Evolve (R.A.I.S.E.) Assessment framework was used to evaluate measures that are typically used when assessing people living with primary progressive aphasia (PPA). METHOD: Forty-five assessment tools were evaluated through the lens of the five R.A.I.S.E. principles: building the client-clinician Relationship, Assessment choices, Including the client and care partners, providing Support, and Evolving procedures to match client capability and progression. The principles were operationalized as questions for raters to evaluate whether a measure met this aspect of the R.A.I.S.E. Assessment framework. RESULTS: Ten measures commonly used in the assessment of people living with PPA met all R.A.I.S.E. principles. These measures centered upon the elicitation of naturalistic discourse, conversation, client self-report, and clinician ratings. Thirteen measures did not meet any of the criteria, and represented standardized evaluation procedures do not provide the opportunity to connect to the client, elicit or provide feedback or support, nor to adapt in response to need or performance. CONCLUSIONS: Whether using standardized or informal assessment tools, a relational and qualitative approach to providing assessment is paramount to promote client success and therapeutic engagement. We provide guidance through the R.A.I.S.E. framework on practices to cultivate person-centered processes of assessment in the care of people living with PPA.

"Please Don't Assess Him to Destruction": The R.A.I.S.E. Assessment Framework for Primary Progressive Aphasia.

PURPOSE: Speech-language pathologists (SLPs) assess people with primary progressive aphasia (PPA) through measurements of speech, language, communication, and well-being, with the aims of identifying challenges and strengths, monitoring change, and informing treatment directions and supports. The purpose of this clinical focus article is to highlight the necessity for person-centered assessment specific to PPA and to conceptualize a framework that acknowledges the multifaceted nature of assessment for this population. In this framework, the unique challenges posed by a diagnosis of PPA are addressed with the aim to provide practical guidance for clinicians and to support reflection on current practices. METHOD: In clinical and research practice, assessment of people with PPA requires an ever-evolving approach that is centered on the client. In this clinical focus article, a discussion-based consensus process was used to synthesize authentic longitudinal experiences of people with PPA to explore assessment approaches, tools, and philosophies. RESULTS: This analysis of person-centered assessment identifies seven essential components of assessment in PPA that set the foundation for the five steps of the R.A.I.S.E. Assessment framework. These components each contribute to a clear definition of assessment that reveals clients' competencies with a strengths-based focus; prioritizes the reciprocity of benefits; promotes dynamic assessment; and recognizes the complexity, evolution of assessment over time, and advocacy. CONCLUSIONS: This clinical focus article takes a novel look at assessment in PPA by stepping away from assessment practices that focus on revealing deficits and decline and, instead, provides practical recommendations through the conceptualization of a PPA-specific assessment framework. The R.A.I.S.E. Assessment framework is grounded in principles of uplifting clients through person-centered assessment, keeps pace with best practice in PPA intervention, and contributes to a supportive experience for clients and families in the face of a progressive diagnosis over time.

An international survey of assessment and treatment practice for discourse in paediatric Acquired Brain Injury.

PURPOSE: Guidelines recommend routine discourse assessment and treatment in paediatric acquired brain injury (ABI) but provide little guidance for clinical practice. The degree to which this has influenced the nature of discourse assessment and treatment in clinical practice has not been examined in detail. METHOD: Speech-language pathologists working in paediatric ABI (clients aged <18 years) in Australia, New Zealand, the UK, the USA, Canada, and the Asia Pacific region were invited to complete a survey of discourse assessment and intervention practices (n = 77). RESULT: Clinicians from Australia and New Zealand comprised over half of a responses (53%). The largest proportion had over 10 years' experience (60%), worked in the metropolitan area (58%), and with secondary school-age children (64%). Routine discourse assessment was undertaken by 80% of respondents, focussing on a limited range of genres. No preferred intervention approach was identified. One-quarter of clinicians routinely considered holistic factors during clinical decision-making. Limited normative data and treatment evidence, insufficient time and training were identified as clinical barriers. CONCLUSION: Assessment practices were consistent with guidelines, yet interventions were highly variable, reflecting limited evidence, client heterogeneity, time constraints, and limited training. A biopsychosocial approach to practice was evident, yet a focus on impairment level factors was prominent. Findings support the need for standardised discourse assessment and discourse intervention methods. Translation into practice guidelines would promote consistency and confidence in clinical practice.

Lost for words: Perspectives and experiences of people with primary progressive aphasia and Alzheimer's disease and their families of participation in a lexical retrieval intervention.

Purpose: Previous qualitative research involving family members' experiences of living with a person with dementia has consistently revealed themes of reduced connectedness and reciprocity of communication, highlighting the importance of education, support and practical strategies to facilitate communication within families. This study aimed to evaluate the perspectives and experiences of both family members and people with dementia following participation in a targeted speech-language pathology intervention involving people with primary progressive aphasia (PPA) and Alzheimer's disease (AD) and their family members. Method: Semi-structured interviews of eight people with dementia (six PPA, two AD) and 10 family members were conducted following an intervention to increase lexical retrieval within functional contexts. Thematic analysis was used to analyse the interview transcripts. Result: Two themes common to participants with dementia and family members emerged: (1) perceived benefits of the intervention and (2) lack of previous information on communication difficulties. Two separate themes emerged for people with dementia, predominantly people with PPA, involving: (1) improved communication and (2) increased participation. Three separate themes emerged for family members: (1) increased awareness and knowledge, (2) increased value of interaction and engagement and (3) uncertainty of the future. Conclusion: The findings of this qualitative study revealed a range of perspectives on the experiences of client and family participants following a communication focussed intervention, examining both the nature of perceived direct gains and gaining insight into the issues faced by these client populations and their families. The provision of individualised information and education should be a fundamental human right for all people with communication impairment with greater attention given to people with progressive conditions where such needs are not currently met.

Statistical analysis plan (SAP) for the Very Early Rehabilitation in Speech (VERSE) after stroke trial: an international 3-arm clinical trial to determine the effectiveness of early, intensive, prescribed, direct aphasia therapy.

Background Limited evidence exists to support very early intensive aphasia rehabilitation after stroke. VERSE is a PROBE trial designed to determine whether two types of intensive aphasia therapy, beginning within 14 days of acute stroke, provide greater therapeutic and cost-effectiveness than usual care. Objective To publish the detailed statistical analysis plan for the VERSE trial prior to unblinding. This statistical analysis plan was based on the published and registered VERSE trial protocol and was developed by the blinded steering committee and management team, led by the trial statistician. This plan was developed using outcome measures and trial data collection forms. Results The VERSE statistical analysis plan is consistent with reporting standards for clinical trials and provides for clear and open reporting. Conclusions Publication of a statistical analysis plan serves to reduce potential trial reporting bias and outlines transparent pre-specified analyses. Australian New Zealand Clinical Trials Registry (ANZCTR) Registration number: ACTRN12613000776707; Universal Trial Number (UTN) is U1111-1145-4130.

A randomized controlled trial of very early rehabilitation in speech after stroke.

RATIONALE: The efficacy of rehabilitation therapy for aphasia caused by stroke is uncertain. AIMS AND HYPOTHESIS: The Very Early Rehabilitation of Speech (VERSE) trial aims to determine if intensive prescribed aphasia therapy (VERSE) is more effective and cost saving than non-prescribed, intensive (usual care-plus) and non-intensive usual care (UC) therapy when started within 15 days of stroke onset and continued daily over four weeks. We hypothesize that aphasia therapy when started very early after stroke and delivered daily could enhance recovery of communication compared with UC. SAMPLE SIZE ESTIMATES: A total of 246 participants (82 per arm) will provide 80% power to detect a 4.4% improvement on aphasia quotient between VERSE and UC plus at a significance level of α = 0.05. SETTING: Acute-care hospitals and accompanying rehabilitation services throughout Australia, 2014-2017. DESIGN: Three-arm, prospective, randomized, parallel group, open-label, blinded endpoint assessment (PROBE) trial. PARTICIPANTS: Acute stroke in previous 14 days and aphasia diagnosed by aphasia quotient (AQ) of the Western Aphasia Battery (WAB). RANDOMIZATION: Computer-generated blocked randomization procedure stratified by aphasia severity according to Western Aphasia Battery, to one of three arms. INTERVENTION: All participants receive UC-usual ward-based aphasia therapy. Arm 1: UC-no additional therapy; Arm 2: UC-plus usual ward-based therapy; Arm 3: VERSE therapy-a prescribed and structured aphasia therapy program. Arms 2 and 3 receive a total of 20 additional sessions (45-60 min, provided daily) of aphasia therapy. The additional intervention must be provided before day 50 post stroke. STUDY OUTCOME MEASURES: The aphasia quotient of Western Aphasia Battery at 12 weeks post stroke. Secondary outcomes include discourse measures, the Stroke and Aphasia Quality of Life Scale-39 and the Aphasia Depression Rating Scale at 12 and 26 weeks. ECONOMIC EVALUATION: Incremental cost-effectiveness ratios at 26 weeks will be reported. DISCUSSION: This trial is designed to test whether the intensive and prescribed VERSE intervention is effective in promoting maximum recovery and preventing costly health complications in a vulnerable population of survivors of stroke. It will also provide novel, prospective, aphasia specific cost-effectiveness data to guide future policy development for this population.

Enhancing research capacity across healthcare and higher education sectors: development and evaluation of an integrated model.

BACKGROUND: With current policy in healthcare research, in the United Kingdom and internationally, focused on development of research excellence in individuals and teams, building capacity for implementation and translation of research is paramount among the professionals who use that research in daily practice. The judicious use of research outcomes and evaluation of best evidence and practice in healthcare is integrally linked to the research capacity and capabilities of the workforce. In addition to promoting high quality research, mechanisms for actively enhancing research capacity more generally must be in place to address the complexities that both undermine and facilitate this activity. METHODS: A comprehensive collaborative model for building research capacity in one health professional group, speech and language therapy, was developed in a region within the UK and is presented here. The North East of England and the strong research ethos of this profession in addressing complex interventions offered a fertile context for developing and implementing a model which integrated the healthcare and university sectors. Two key frameworks underpin this model. The first addresses the individual participants' potential trajectory from research consciousness to research participative to research active. The second embeds a model developed for general practitioners into a broader framework of practice-academic partnership and knowledge and skills exchange, and considers external drivers and impacts on practice and patient outcomes as key elements. RESULTS AND DISCUSSION: The integration of practice and academia has been successful in building a culture of research activity within one healthcare profession in a region in the UK and has resulted, to date, in a series of research related outcomes. Understanding the key components of this partnership and the explicit strategies used has driven the implementation of the model and are discussed here. CONCLUSIONS: A strong, equitable collaboration between clinical and academic partners working towards a common outcome can enhance the use of research within the healthcare workforce and contribute actively to the research process. A set of propositions are specified to facilitate both transferability of this partnership model to other professional groups and clinical teams and evaluation of the model components.

Evaluating the effectiveness of intervention in long-term aphasia post-stroke: the experience from CHANT (Communication Hub for Aphasia in North Tyneside).

BACKGROUND: Despite recognition of the need for increased long-term support for people with aphasia following stroke, there remains limited evidence for effective service-level interventions. AIMS: To evaluate the outcomes and experiences of people participating in the Communication Hub for Aphasia in North Tyneside (CHANT), a 2-year partnership project between health, local authority and third-sector services, shaped by people with aphasia, which provided a coordinated programme of support and interventions for people with long-term aphasia following stroke. METHODS & PROCEDURES: Quantitative and qualitative methods were used in the evaluation. Thirty-nine participants with aphasia were recruited to the 12-month study as they became part of CHANT, with 20 completing all measures at the end of the study. Participants had no other speech and language therapy during the study. Quantitative measures (before and after intervention) were used for quality of life, self-report outcomes and goal attainment. Three of the participants with aphasia and three further people involved in the service (carer, volunteer, public sector worker) each agreed to a series of five semi-structured interviews over a 9-month period. A total of 28 interviews were collected using neutral interviewers; these were transcribed and analysed by a team within NVivo8 software, based on interpretive principles from grounded theory. Thematic analysis of the narratives explored the experience of engaging with CHANT, and the barriers and facilitators affecting quality of life. OUTCOMES & RESULTS: People with aphasia made significant gains in quality of life (in particular, in communication and psychosocial adjustment to stroke) and self-report measures of change. A total of 82% of real-life goals set as part of intervention were fully or partially achieved at follow-up. Five core themes emerged from the narratives: 'Quality of life', 'Barriers', 'Facilitators', 'Types of CHANT activity' and 'Effectiveness'. The intervention was evaluated through the theme of 'Effectiveness' in relation to the other themes, encapsulating emerging participant views (including the type and timeliness of activity, expectations of outcomes, resources and perceived value). The impact of the intervention was also analysed in terms of identifying barriers and providing facilitators. CONCLUSIONS & IMPLICATIONS: The quantitative and qualitative (narrative) findings were complementary in demonstrating the effectiveness of the CHANT service delivery model. Moreover, the narratives, through a longitudinal perspective, provided evidence about people's experience of intervention for long-term aphasia. The findings provide foundations for further work into long-term recovery, intervention and adjustment to aphasia post-stroke.