Assumptions about Decision-Making Capacity and Aphasia: Ethical Implications and Impact.

This article explores the issue of aphasia and decision-making within the context of clinical ethics and patient rights. The cases described illustrate the danger of making assumptions about the inherent competence of people with aphasia and the life-altering consequences if no attempt is made to "accommodate" or support communication when competence may be masked by aphasia. Speech-language pathologists have a moral obligation and a key role to play in providing communication support that may serve to reveal a person's intact capacity to make specific decisions, as well as in supporting the steps involved in the decision-making process. This role also extends to providing guidance, education, and training for others involved in evaluating the decision-making capacity of people with aphasia. Communication support strategies useful at each stage of the decision-making process are detailed.

Communicative Access Measures for Stroke: Development and Evaluation of a Quality Improvement Tool.

OBJECTIVES: To (1) develop a systems-level quality improvement tool targeting communicative access to information and decision-making for stroke patients with language disorders; and (2) evaluate the resulting tool-the Communicative Access Measures for Stroke (CAMS). DESIGN: Survey development and evaluation was in line with accepted guidelines and included item generation and reduction, survey formatting and composition, pretesting, pilot testing, and reliability assessment. SETTING: Development and evaluation were carried out in hospital and community agency settings. PARTICIPANTS: The project used a convenience sample of 31 participants for the survey development, and 63 participants for the CAMS reliability study (broken down into 6 administrators/managers, 32 frontline staff, 25 participants with aphasia). Eligible participants invited to the reliability study included individuals from 45 community-based organizations in Ontario as well as 4400 individuals from communities of practice. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Data were analyzed using kappa statistics and intraclass correlations for each item score on all surveys. RESULTS: A tool, the CAMS, comprising 3 surveys, was developed for health facilities from the perspectives of (1) administrators/policymakers, (2) staff/frontline health care providers, and (3) patients with aphasia (using a communicatively accessible version). Reliability for items on the CAMS-Administrator and CAMS-Staff surveys was moderate to high (kappa/intraclass correlation coefficients [ICCs], .54-1.00). As expected, reliability was lower for the CAMS-Patient survey, with most items having ICCs between 0.4 and 0.6. CONCLUSIONS: These findings suggest that CAMS may provide useful quality improvement information for health care facilities with an interest in improving care for patients with stroke and aphasia.

Getting on with the rest of your life following stroke: a randomized trial of a complex intervention aimed at enhancing life participation post stroke.

OBJECTIVE: To enhance participation post stroke through a structured, community-based program. DESIGN: A controlled trial with random allocation to immediate or four-month delayed entry. SETTING: Eleven community sites in seven Canadian cities. SUBJECTS: Community dwelling persons within five years of stroke onset, cognitively intact, able to toilet independently. INTERVENTIONS: Evidence-based program delivered in three 12-week sessions including exercise and project-based activities, done as individuals and in groups. MAIN MEASURES: Hours spent per week in meaningful activities outside of the home and Reintegration to Normal Living Index; Stroke-Specific Geriatric Depression Scale, Apathy Scale, gait speed, EuroQuol EQ-5D, and Preference-Based Stroke Index. All measures were transformed to a scale from 0 to 100. Assessments prior to randomization, after the first session at three months, six months, 12 months, and 15 months. RESULTS: A total of 186 persons were randomized. The between-group analysis showed no disadvantage to waiting and so groups were combined and a within-person analysis was carried out at three time points. There were statistically significant increases in all study outcomes on average over all persons. Over 45% of people met or exceeded the pre-specified target of a three hour per week increase in meaningful activity and this most often took a full year of intervention to achieve. Greatest gains were in satisfaction with community integration (mean 4.78; 95% CI: 2.01 to 7.55) and stroke-specific health-related quality of life (mean 4.14; 95% CI: 2.31 to 5.97). CONCLUSIONS: Community-based programs targeting participation are feasible and effective, but stroke survivors require time to achieve meaningful gains.

Improving communicative access and patient experience in acute stroke care: An implementation journey.

INTRODUCTION: Patient experience for people with aphasia/families in acute care is frequently reported as negative, with communication barriers contributing to adverse events and significant long-term physical and psychosocial sequelae. Although the effectiveness of providing supported communication training and resources for health care providers in the stroke system is well documented, there is less evidence of implementation strategies for sustainable system change. This paper describes an implementation process targeting two specific areas: 1) improving Stroke Team communication with patients with aphasia, and 2) helping the Stroke Team provide support to families. The project aimed for practical sustainable solutions with potential contribution toward the development of an implementation practice model adaptable for other acute stroke contexts. METHODS: The project was designed to create a communicatively accessible acute care hospital unit for people with aphasia. The process involved a collaboration between a Stroke Team covering two units/wards led by nurse managers (19 participants), and a community-based Aphasia Team with expertise in Supported Conversation for Adults with Aphasia (SCA™) - an evidence-based method to reduce language barriers and increase communicative access for people with aphasia. Development was loosely guided by the integrated knowledge translation (iKT) model, and information regarding the implementation process was gathered in developmental fashion over several years. OUTCOMES: Examples of outcomes related to the two target areas include provision of accessible information about aphasia to patients as well as development of two new products - a short virtual SCA™ eLearning module relevant to acute care, and a pamphlet for families on how to keep conversation alive. Potential strategies for sustaining a focus on aphasia and communicative access emerged as part of the implementation process. CONCLUSIONS: This implementation journey allowed for a deeper understanding of the competing demands of the acute care context and highlighted the need for further work on sustainability of communicative access interventions for stroke patients with aphasia and their families.

A-FROM in action at the Aphasia Institute.

Aphasia centers are in an excellent position to contribute to the broad definition of health by the World Health Organization: the ability to live life to its full potential. An expansion of this definition by the World Health Organization International Classification of Functioning, Disability and Health (ICF) forms the basis for a user-friendly and ICF-compatible framework for planning interventions that ensure maximum real-life outcome and impact for people with aphasia and their families. This article describes Living with Aphasia: Framework for Outcome Measurement and its practical application to aphasia centers in the areas of direct service, outcome measurement, and advocacy and awareness. Examples will be drawn from the Aphasia Institute in Toronto. A case will be made for all aphasia centers to use the ICF or an adaptation of it to further the work of this sector and strengthen its credibility.

Development and evaluation of the Basic Outcome Measure Protocol for Aphasia (BOMPA).

PURPOSE: The Basic Outcome Measure Protocol for Aphasia (BOMPA) is a practical tool that allows for a quick self-report on quality of life from the perspective of the person with aphasia, as well as a clinical evaluation of aphasia severity and the ability to participate in conversation. The primary aim of this paper is to describe development of BOMPA and report on results of an inter-rater reliability study involving speech-language pathology raters. METHOD: The inter-rater reliability study utilised a fully crossed design and included independent ratings of 12 videos by 20 speech-language pathologists. RESULT: Results indicate moderate to strong inter-rater reliability among participant speech-language pathology raters (0.65-0.96), as well as when comparing these participant ratings with an expert rater's gold standard (0.59-0.86). CONCLUSION: BOMPA may be a useful outcome measurement tool for time-pressed clinicians in clinical settings.

Incidence and profile of inpatient stroke-induced aphasia in Ontario, Canada.

OBJECTIVES: To determine the incidence rate of inpatient stroke-induced aphasia in Ontario, Canada, and to examine the demographic and clinical characteristics for stroke patients with and without aphasia. DESIGN: Age- and sex-specific incidence rates for aphasia in Ontario were calculated using the Ontario Stroke Audit. In addition, data collected from the Registry of the Canadian Stroke Network (RCSN) were used to determine the demographic and clinical characteristics for stroke patients with and without aphasia. SETTING: All hospitals and regional stroke centers in Ontario, Canada. PARTICIPANTS: The Ontario Stroke Audit is a representative weighted sample of more than 3000 stroke inpatients admitted to emergency departments in all hospitals in Ontario within the 2004/2005 fiscal year. RCSN data included a cohort of more than 15,000 consecutive patients presenting with stroke at 12 regional stroke centers in Ontario from 2003 to 2007. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Presence of aphasic symptoms on admission to hospital and at discharge, age and sex, stroke type and severity, severity of disability, services received in hospital, length of stay, and discharge destination. RESULTS: Thirty-five percent (1131/3207) of adult patients admitted with a diagnosis of stroke in the province of Ontario during the 2004 to 2005 Ontario Stroke Audit had symptoms of aphasia at the time of discharge. This amounts to an incidence rate of 60 per 100,000 persons per year. Risk of aphasia increased significantly with age. In comparison with nonaphasic stroke patients, patients with aphasia were older, presented with more severe strokes on admission, had more severe disability, and were more frequently discharged to long-term care and/or rehabilitation (unadjusted results). Adjusting for stroke severity, age, sex, comorbidity, and stroke subtype, the presence of aphasia was found to be an independent predictor of longer hospital stays, increased use of rehabilitation services, and higher rates of thrombolytic therapy. CONCLUSIONS: A significant number of people with stroke experience aphasia, with advancing age associated with a higher risk. The profile and patterns for stroke patients with aphasia differed significantly from those who did not experience aphasia as a residual disability after stroke, particularly in relation to service usage. Given the personal and system cost associated with aphasia, best practices in the area of stroke should include recommendations on how to best serve this population throughout the clinical pathway.

Exploring the feasibility of videoconference delivery of a self-management program to rural participants with stroke.

Moving On after STroke (MOST(R)) is a multimodal, psycho-educational, and exercise self-management program for people with stroke and their caregivers. The objective of this study was to explore the feasibility of videoconference delivery to rural communities. Seven participants, their caregivers, and two facilitators formed one group, located in an urban center. Five participants and their caregivers from two remote locations were connected by videoconference. Feasibility was assessed by examining recruitment and attendance rates; program adaptations; and participant, facilitator, and staff perceptions. Data sources included logs, surveys, focus groups, and interviews. To examine preliminary outcomes, goal attainment, balance, mood, participation, and walking endurance were measured pre-, post-, and 3 months following intervention. Twelve participants were recruited in 3 weeks. Attendance rates were 89.8% for the local group and 70.4% for the remote group. Program adaptations, facilitation strategies, and involvement of onsite support promoted the success of the videoconference delivery. Participants reported that the program provided people with stroke as well as caregivers with greater awareness of stroke, increased social support, and improved ability to cope. They reported a decrease in loneliness by sharing with others in a similar situation, even if they were in a different community. Pre-post improvements were seen in goal setting, mood, balance, balance confidence, and walking endurance. Videoconferencing is a feasible method for the dissemination of the MOST program to rural areas. This form of delivery is associated with improvements in goal achievement, mood, balance, and endurance, and is well received by all participants.

The Impact of Exposure With No Training: Implications for Future Partner Training Research.

Purpose: This research note reports on an unexpected negative finding related to behavior change in a controlled trial designed to test whether partner training improves the conversational skills of volunteers. Method: The clinical trial involving training in "Supported Conversation for Adults with Aphasia" utilized a single-blind, randomized, controlled, pre-post design. Eighty participants making up 40 dyads of a volunteer conversation partner and an adult with aphasia were randomly allocated to either an experimental or control group of 20 dyads each. Descriptive statistics including exact 95% confidence intervals were calculated for the percentage of control group participants who got worse after exposure to individuals with aphasia. Results: Positive outcomes of training in Supported Conversation for Adults with Aphasia for both the trained volunteers and their partners with aphasia were reported by Kagan, Black, Felson Duchan, Simmons-Mackie, and Square in 2001. However, post hoc data analysis revealed that almost one third of untrained control participants had a negative outcome rather than the anticipated neutral or slightly positive outcome. Conclusions: If the results of this small study are in any way representative of what happens in real life, communication partner training in aphasia becomes even more important than indicated from the positive results of training studies. That is, it is possible that mere exposure to a communication disability such as aphasia could have negative impacts on communication and social interaction. This may be akin to what is known as a "nocebo" effect-something for partner training studies in aphasia to take into account.

Developing Accessible, Pictorial Versions of Health-Related Quality-of-Life Instruments Suitable for Economic Evaluation: A Report of Preliminary Studies Conducted in Canada and the United Kingdom.

A key component of the current framework for economic evaluation is the measurement and valuation of health outcomes using generic preference-based health-related quality-of-life (HRQoL) instruments. In 2015, a research synthesis reported the absence of conceptual and empirical research regarding the appropriateness of current preference-based instruments for people with aphasia-a disorder affecting the use and understanding of language-and suggested the development and validation of an accessible, pictorial variant could be an appropriate direction for further research. This paper describes the respective rationale and development process for each of three preliminary studies that have been undertaken to develop pictorial variants of two widely used preference-based HRQoL instruments (EQ-5D-3L and EQ-5D-5L). The paper also proposes next steps for this program of research, drawing on the lessons learned from the preliminary work and the demand for a pictorial preference-based instrument in the research community. Guidance for the use of the preliminary, pictorial instruments is also provided.

Outcome assessment in aphasia: a survey.

UNLABELLED: There has been a marked increase in attention to the measurement of "outcomes" after speech-language intervention for adult aphasia. Consumers, speech-language pathologists (SLPs), and funding sources desire evidence of therapy outcomes that improve communication and enhance the quality of life for people with aphasia. While many assessment tools are available to measure outcomes after aphasia therapy, there is little information regarding the use of these tools in everyday practice by SLPs. Therefore, the current investigation was undertaken to identify and describe the practices of SLPs relative to outcome assessment in aphasia. An online survey of outcome assessment practices was distributed. Results revealed that 85% of the 94 respondents reportedly perform outcome assessment. A majority of respondents reported barriers to assessment such as time and funding limitations. Considerable variability existed in the types of assessments and the actual tools reported. The impact of the results on clinical practice is discussed. LEARNING OUTCOMES: As a result of this activity the reader will be able to (1) define outcome assessment in aphasia, (2) describe patterns of outcome assessment in aphasia as reported by survey respondents, and (3) describe a conceptual framework for situating outcome assessment in aphasia.

A set of observational measures for rating support and participation in conversation between adults with aphasia and their conversation partners.

Conversation partners of individuals with aphasia, including health care professionals, families, and others, play a role that is as important for communication as the language disorder suffered by individuals with aphasia. Two complementary measures designed to capture elements of conversation between adults with aphasia and their speaking conversation partners have been developed. The first measure provides an index of the conversation partner's skill in providing conversational support. The second provides an index of the level of participation in conversation by the person with aphasia. This article describes the development of the measures, including preliminary psychometric data, and discusses applications.

Motivating for infrastructure change: toward a communicatively accessible, participation-based stroke care system for all those affected by aphasia.

UNLABELLED: This paper provides a rationale for changing the base upon which healthcare services for individuals with stroke and aphasia can be provided. It is a nuts-and-bolts summary of the interactions between the Aphasia Institute and the West Greater Toronto Stroke Network who worked together to effect meaningful change. Further, the article provides a practical set of guidelines for others to use, should they wish to effect such change. LEARNING OUTCOMES: As a result of reading this article, the participant will be able to (1) develop a strong rationale changing the infrastructure related to healthcare services for individuals and families who have incurred stroke and aphasia; (2) describe the activities undertaken at the Aphasia Institute for accomplishing these changes; (3) refer to a practical set of guidelines for effecting infrastructural change.

The assessment for living with aphasia: reliability and construct validity.

The Assessment for Living with Aphasia (ALA) is a pictographic, self-report measure of aphasia-related quality-of-life. Research was undertaken to assess test-re-test reliability, construct validity, and the ability to discriminate aphasia severity. The ALA was administered to 101 participants with aphasia on two occasions. Test-re-test reliability was evaluated using intra-class correlations and internal consistency using Cronbach's alpha. Three reference measures were administered to assess construct validity. A focus group reported on ease of administration and face validity. Analysis identified 15 out of 52 rated items for elimination. For the remaining items, test-re-test reliability was excellent for the total score (ICC = .86) and moderate-to-strong for a priori domains adapted from the WHO ICF (.68-.83). Internal consistency was acceptable-to-high. Significant correlations were observed between the ALA and reference tests (SAQOL-39, .72; p < .001; VASES, .62, p = .03; BOSS CAPD, -.69; p = .008). The language impairment domain discriminated between all aphasia severity groups, while mild aphasia was different from moderate and severe aphasia in participation and total scores. The ALA was reportedly easy to administer and captured key aspects of the experience of living with aphasia. Results suggest acceptable test-re-test reliability, internal consistency and construct validity of the ALA.

Application of the ICF in aphasia.

The aim of this article is to describe aphasia using the framework provided by the World Health Organization's International Classification of Functioning, Disability and Health (ICF). The key constructs of ICF are described in relation to the ultimate goal of intervention in aphasia-maximizing quality of life. Aphasic impairments as well as activity limitations and participation restrictions are discussed. In addition, the impact of contextual factors on the experience of aphasia and participation in life are addressed. Finally, a case example is presented to depict the use of the ICF as an organizational framework for approaching management of impairments and consequences of aphasia.

Revealing the competence of aphasic adults through conversation: A challenge to health professionals.

The idea that aphasia masks competence normally revealed through conversation forms the basis for a conceptual model thatextends the traditional definition and scope of practice in this field. The model focuses on the long-term, psychosocial consequences of reduced communicative access to social and community life, including reduced access to the service of health professionals. Intervention focuses on training conversation partners (including health professionals) to acqu i re ski I Is that enable the com petence of aphasic adults to be acknowledged and revealed.

Family perspectives from three aphasia centers in Ontario, Canada.

Speech-language pathologists and social workers at the three Aphasia Centres in Ontario, Canada, work in partnership with aphasic adults and their families to increase communicative access to participation in various aspects of social and community life. The delivery of optimal service in this context requires an expansion of the traditional role played by speech-language pathologists in the field of aphasia. Illustrative ideas, activities, and programs developed by the three centers are described with emphasis on the benefits of a professional partnership between the professions of speech-language pathology and social work.