Aura Kagan

Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention

Background: The initial motivation was our inability to capture the important but often elusive outcomes of interventions that focus on making a difference to the everyday experience of individuals with aphasia and their families. In addition, a review of the literature and input from stakeholder focus groups revealed the lack of an integrated approach to outcome evaluation across diverse approaches to aphasia intervention. Input from focus groups also indicated that existing classifications and models offering potential solutions are not always easily accessible and user friendly. This research has been generously funded by a grant from the Ontario Ministry of Health and Long Term Care. The views expressed here do not necessarily reflect those of the Ministry. The authors thank staff at the Aphasia Institute and members of the Ontario Aphasia Centres Interest Group for their participation in the project, Drs Audrey Holland and Roberta Elman for useful feedback on earlier drafts of this article, Laura Dickey for administrative support, and Carmela Simone and Meghan Roberts for development of pictographs. Aims: We aimed to create a user‐friendly conceptual framework for outcome measurement in aphasia that included a focus on real‐life outcomes of intervention and could be easily accessed by clinicians, researchers, policy makers, funders, and those living with aphasia. We wanted to build on existing work, e.g., that of the World Health Organisation, simplify presentation for accessibility, and make specific adaptations relevant to aphasia. By providing a common context for a broad range of outcome tools or measures, we hoped to enable more efficient and effective communication between and among all stakeholders. Main contribution: Living with Aphasia: Framework for Outcome Measurement (A‐FROM) is a conceptual guide to outcome assessment in aphasia that is situated within current thinking about health and disability. This simple platform can be used to frame and broaden thinking concerning outcome measurement for aphasia clinicians and researchers while enhancing the potential for meaningful communication between the clinical community, policy makers, and funders. By integrating Quality of Life and including domains related to environment, participation, and personal identity in the same framework as impairment, the importance of outcomes in all these areas is acknowledged for aphasia in particular and disability in general. A‐FROM has the potential to be used as an advocacy tool. Conclusions: This article is the first presentation of A‐FROM as an alternate guide to outcome measurement in aphasia. Initial ideas regarding applications are discussed. Further development and applications await input from our community of practice.

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.

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.

Functional Is Not Enough: Training Conversation Partners for Aphasic Adults

Visit with us at a local community center program. Nothing particularly dramatic is occurring — just small groups of four or five people sitting around tables, chatting. Most participants are seniors; some are in wheelchairs. One of the group members seems to be doing more of the talking and, at times, there are longer periods of silence than you might expect. Laughter emanates from many of the groups, while others seem involved in serious discussion. You see newspapers on the tables, along with blank cards, paper, pencils, and markers. Photographs, maps, magnetic alphabet boards, and calendars are easily accessible to all.

A Set of Observational Measures for Rating Support and Participation in Conversation Between Adults with Aphasia and Their Conversation Partners

Abstract 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

Abstract 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 Cronbachs 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.

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.

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.

Closing the evidence, research, and practice loop: Examples of knowledge transfer and exchange from the field of aphasia

Background: Knowledge transfer and exchange (KTE) is an emerging area of expertise with potential to foster productive relationships between researchers and users of research in the field of aphasia. Effective KTE can increase the use of research evidence in policy and practice decisions and enable researchers to identify research questions that are relevant to potential users of research. In Canada it is now frequently mandatory for research applications to include a KTE plan. Aims: To provide a background to KTE by reviewing theoretical models and basic principles and elements of a KTE plan, as well as by highlighting potential contributions to the field of clinical aphasiology. Main contribution: Introduction of a new area of expertise to our field with examples of practical applications. Conclusions: The application of KTE principles and methods has positive implications for clinical and policy decision making in the field of clinical aphasiology. The authors thank staff at the Aphasia Institute, and all those involved in the think tank, conference, and community of practice referred to in the article. Thanks also to Ada Mok for administrative support.