Outcome Measurement based on the Life Participation Approach to Aphasia: Vol. 1

The MossRehab Aphasia Center was founded on the principles of the Life Participation Approach to Aphasia (LPAA, Chapey et al., 2000).  These principles include:

  • Explicit goal is enhancement of life participation
  • Services are available to all affected by aphasia
  • Assessment and intervention targets personal and environmental factors
  • Success is measured by documented life changes

The importance of adherence to these principles is brought into sharp relief by recent evidence:

  • 20% of persons with aphasia report having no friends at 6-months post-stroke (Aphasia Access White Paper, Simmons-Mackie, 2018)
  • Best Practice Recommendations (Shrubsole et al., 2017; Simmons-Mackie et al., 2017)
    • Access for all persons with aphasia
      • Assessment and treatment
    • Meaningful impact on quality of life
    • Goals people with aphasia have for themselves (e.g., Worrall et al., 2011)
    • Greater control and independence
    • More social opportunities

The question is, how can we make measurement of life changes feasible and practical when confronted with the reality of clinical practice?  Is it possible to measure objectively what is in many ways a subjective experience? 

We propose that the answer is, yes!  In the weeks to come, we will be posting a series on suggestions for strategic outcome measurement based on the principles of the LPAA.  Each of these will be based on the following, fictitious, case example.

Donna is a 67 y/o woman, 14-months s/p ischemic L MCA affecting fronto- parietal and superior temporal cortex, sparing Wernicke’s area.  She is right-handed and is a native English speaker.  She worked as an outpatient coordinator for a local children’s specialized hospital for 25 years, having retired 6 months prior to her stroke.  She has 5 adult children and 15 grandchildren ranging in age from 15 years to 3 months.  A month prior to her stroke, she and her husband rescued a 7 year-old American Staffordshire Terrier from a local shelter.

Per WAB-R, Donna presents with conduction aphasia, but her language production may be better characterized as borderline fluent with mild apraxia of speech.  Word retrieval difficulty is characterized by use of non-specific words (thing/stuff, pronouns without antecedents), empty circumlocution, frequent pauses lasting longer than 2 seconds, and comments indicating difficulty.  Agraphia without alexia is also present.  She and her husband both report that she spends most of her days watching TV, which was not her habit prior to her stroke. 

In today’s post, we’ll demonstrate one tool, Key Life Inventories (Simmons-Mackie & Damico, 2001), which can be used to proceed from initial assessment to an outcome that reflects this client and her co-survivor’s goals for themselves.

Key Life Inventories can serve as practical method to organize your conversation and support clients in reflecting on their lives, what has changed since their stroke, and what is going to important to them moving forward. People with aphasia may need multimodality assistance to comprehend what information is being asked of them and to express that information.  Visual aids, such as the LIV cards (Haley et al., 2010) and the Assessment for Living with Aphasia (Kagan et al., 2010) are two examples of clinical tools that can provide that support.

The first step will be to help your client think about what activities were important to them before the stroke, whether those activities are still important to them, and any new things that have become important to them since the stroke.  Below is an example Key Life Inventory for Donna.

The next step will be to help the client think about the, “What now?“. How will this exercise be used to move toward goals they have for themselves?  In doing so, it can be important to help clients communicate about what strengths they have and how those strengths can be harnessed in the pursuit of priorities, whether they are the same those before the stroke or are new. 

Help clients think about not only activities in which they want to engage, but also how engaging in those activities will move them toward fulfillment of the responsibilities they feel in the relationships and roles they have in their lives.  Below are some examples from Donna’s case.

Just as clients don’t tend to come to us with goals like, “I want to increase my auditory comprehension to 80% accuracy”, we cannot work toward a goal to “host a pot luck family dinner with 80% accuracy”.  We must apply clinical expertise to translate Donna’s desired outcomes into cognitive-linguistic skills and tasks and communicative competencies, and to determine any internal or external barriers that need to be addressed. 

In Donna’s elaborated Key Life Inventory below, we now position the newly established goals as the starting point that informs the choice of clinical tools to:

  • Determine the skills required and how to train/support/facilitate progress
  • Identify any internal (e.g., lack of confidence) and external barriers to progress
  • Confirm plan with the client, implement plan, assess/measure progress

In the next post in our series, we’ll examine how we might engage Donna and her co-survivor in ongoing conversation about progress toward her cognitive-linguistic goals, as well as positive change in Donna’s communication confidence, and how we might assess the degree to which the treatment strategies we’ve chosen are facilitating progress toward these goals.

Portions of this post were originally presented at the 2018 ASHA Convention in a talk entitled, Strategic outcome measurement using the life participation approach to aphasia, presented by the Aphasia Access Research Working Group (Antonucci, Cherney, Kagan, Haley, Holland, Schwartz, Simmons-Mackie, & Kiran).

Online resources

References and published resources

  • Babbitt, E., Heinemann, A., Semik, P., & Cherney, L. R. (2011).  Psychometric properties of the communication confidence rating scale for aphasia (CCRSA): Phase 2.  Aphasiology, 25(6-7), 727-735.
  • Chapey et al., 2000. Life Participation Approach to Aphasia: A Statement of Values for the Future.  ASHA Leader 5(3):4-6
  • Cherney, L. R., Babbitt, E. M., Semik, P., & Heinemann, A. W. (2011). Psychometric properties of the communication confidence rating scale for aphasia (CCRSA): Phase 1.  Topics in Stroke Rehabilitation, 18(4).  352-360.
  • Elman, R. (Ed.). (2006). Group Treatment of Neurogenic Communication Disorders: An Expert Clinician’s Approach, (2nd ed.), San Diego, CA: Plural publishing.
  • Garrett, K. & Pimentel (2007). Measuring outcomes of group therapy. In R. Elman (Ed.). Group treatment for neurogenic communication disorders: The expert clinician’s approach. (2nd ed. ) San Diego, CA: Plural Publishing.
  • Goodwin, Charles (1995). Co-Constructing Meaning in Conversations with an Aphasic Man. Research on Language and Social Interaction , 28 (3), 233-260.
  • Haley KL, Womack JL, Helm-Estabrooks N, Caignon D, & McCulloch KL, (2010). The Life Interest and Values Cards. Chapel Hill, NC: University of North Carolina Department of Allied Health Sciences.
  • Haley KL, Womack JL, *Harmon TG, McCulloch M, & Faldowski R. (2018). Life activity choices by people with aphasia: Repeated interviews and proxy agreement. Aphasiology. doi:10.1080/02687038.2018.1506087
  • Hilari, K., Byng, S., Lamping, D. L., & Smith, S. C. (2003). Stroke and Aphasia Quality of Life Scale­39 (SAQOL­39): Evaluation of Acceptability, Reliability, and Validity. Stroke, 34(8), 1944-­1950.
  • Hopper, T., Holland, A., & Rowega, M. (2002). Conversational coaching: Treatment outcomes and future directions. Aphasiology, 16(7), 745­-761.
  • Hula, W., Doyle, P., Stone, C.A., Austermann­-Hula, S. N., Kellough, S., Wambaugh, J., Ross, K. B., Schumacher, J. G., & St. Jacque, A. (2015). The Aphasia Communication Outcome Measure (ACOM): Dimensionality, Item Bank Calibration, and Initial Validation. Journal of Speech, Language, and Hearing Research, 58, 906–919.
  • Kagan, A. et al., (2008). Counting what counts: A framework for capturing real­life outcomes of aphasia intervention, Aphasiology 22(3), 258-­280.
  • Kagan, A. et al., (2008). Counting what counts: A framework for capturing real­life outcomes of aphasia intervention, Aphasiology 22(3), 258-­280.
  • Kagan, A., Simmons­-Mackie, N., Victor, J. C., Carling­Rowland, A., Hoch, J., Huijbregts, M., Streiner, D., & Mok, A. (2010). Assessment for Living with Aphasia (ALA). Toronto: Aphasia Institute.
  • Kagan, A., Winckel, J., Black, S., Duchan, J. F., Simmons-Mackie, N., & Square, P. (2004). A set of observational measures for rating support and participation in conversation between adults with aphasia and their conversation partners. Topics in Stroke Rehabilitation, 11(1), 67-83.
  • Kertesz, A. (2006). The Western Aphasia Battery–Revised. San Antonio, TX: The Psychological Corporation.
  • Kiran, S. et al., (2018). Survey of aphasia assessment measures implemented in clinical and research settings. Poster presented at the 2018 Clinical Aphasiology Conference, Austin: TX.
  • Lomas, J., Pickard, L., Bester, S., Elbard, H., Finlayson, A., & Zoghaib, C. (1989). The Communicative Effectiveness Index: development and psychometric evaluation of a functional communication measure for adult aphasia. Journal of Speech and Hearing Disorders, 54(1), 113-­124.
  • MacWhinney, B., Fromm, D., Forbes, M. & Holland, A. (2011). AphasiaBank: Methods for studying discourse. Aphasiology, 25, 1286-­1307.
  • Mayer, J.F., & Murray, L.L. (2003). Functional measures of naming in aphasia: Word retrieval in confrontation naming versus connected speech. Aphasiology, 17, 481­-497.
  • Nicholas, L.E. & Brookshire, R. H. (1993). A system for quantifying the informativeness and efficiency of the connected speech of adults with aphasia. Journal of Speech and Hearing Research, 36(2), 338-3­50.
  • Schlosser, R. W. (2004). Goal attainment scaling as a clinical measurement technique in communication disorders: A critical review.  Journal of Communication Disorders, 37(3), 217-239.
  • Shurbsole, K., Worrall, L., Power, E. & O’Connor, D. E. (2017). Recommendations for post­-stroke aphasia rehabilitation: an updated systematic review and evaluation of clinical practice guidelines. Aphasiology, 31(1), 1­-24.
  • Simmons-­Mackie, N. et al., (2017). The top ten: Best practice recommendations for aphasia. Aphasiology, 31(2), 131­-151.
  • Simmons-­Mackie, N. N. & Damico, J. S. (2001). Intervention outcomes: A clinical application of qualitative methods. Topics in Language Disorders, 22(1), 21-­36.
  • Simmons-­Mackie, N.N. (2018). Aphasia in North America. Aphasia Access
  • Swinburn, K., Porter G., & Howard, D. (2004). Comprehensive Aphasia Test. Psychology Press.
  • Wallace, S. J. et al. (2016). Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disability and Rehabilitation, 1­-16.
  • Whiteneck, G. G., Harrison-Felix, C. L. et al., (2004).  Quantifying environmental factors: a measure of physical, attitudinal, service, productivity, and policy barriers.  Archives of Physical Medicine & Rehabilitation, 85(8), 1324-1335
  • Whitworth, A. (2003). The Application of Conversation Analysis (CA) to the Management of Aphasia. Publié dans Revue Tranel (Travaux neuchâtelois de linguistique), 38/39, 63­-76.
  • Wilkinson, R. (2006). Applying conversation analysis to aphasic talk: From investigation to intervention. Revue Française de Linguistique Appliquée, 11(2), 99­-110.
  • Worrall, L., Sherratt, S., Rogers, P., Howe, T., Hersh, D., Ferguson, A., & Davidson, B. (2011). What people with aphasia want: Their goals according to the ICF. Aphasiology, 25(3), 309–322.

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