On behalf of the Australian NHMRC Centre for Clinical Research Excellence in Aphasia Rehabilitation NHMRC grant # 569935

1. People living with aphasia win! Better pathways and rehabilitation options Linda Worrall Director, CCRE in Aphasia Rehabilitation Co-Director, Communication Disability Centre Postgraduate Coordinator, School of Health and Rehabilitation Sciences The University of Queensland, Brisbane, Australia. On behalf of the Australian NHMRC Centre for Clinical Research Excellence in Aphasia Rehabilitation NHMRC grant #569935

2. My assumptions • People living with aphasia should drive services. • The patient journey is as important as the outcome. • There are evidence-practice gaps along the continuum of care in aphasia rehabilitation. • More cost effective aphasia rehabilitation options are needed. • A united front will give aphasia a louder voice within stroke care.

3. Learning outcomes • Understand what people with aphasia and their family want. • Consider the Knowledge Transfer and Exchange model and Communities of Practiceas a means of closing the evidence-practice gaps. • Evaluate new rehabilitation options such as intensive comprehensive aphasia programs e.g. UQ Aphasia LIFT • Be motivated to support Aphasia United.

4. Outline • Who are we? CCRE in Aphasia Rehabilitation. • Goals in Aphasia Project: What do people with aphasia and their families want = what do SLT’s want for them? • Pathways Project: the Australian Aphasia Rehabilitation Pathway • The LIFT program • Aphasia United.

5. The NHMRC Centre for Clinical Research Excellence (CCRE) in Aphasia Rehabilitation • Includes: • 12 investigators • 9 post docs • 24 research affiliates • 33 doctoral students • ~ 200 clinical affiliates Worrall, Togher, Ferguson, Rose, Copland, Nickels, Douglas, Armstrong, Davidson, Ballard, Simmons-Mackie, Gonzalez-Rothi, Power, Godecke, Rodriguez, O’Halloran, Renvall, Rose, Mok, Barnes, McDonald, Whitworth, Meinzer. This project is funded by NHMRC Grant # 569935 (CCRE in Aphasia Rehabilitation)

6. Bridging the functional-impairment gap in Australia • Listened to what clients wanted (GAP) • Awarded a large national grant (CCRE) • United under a common goal (Pathway) • Worked together with clients (LIFT)

7. Goals in aphasia project (GAP)Worrall, Davidson, Hersh, Ferguson, Howe, Sherratt This project was funded by NHMRC Grant #401532);

8. Research aims • To gain the insider’s perspective into: • what people with aphasia and their family want from aphasia services • how speech pathology assisted with their goals of recovery • To explore and compare the treating speech pathologists’ perception of the clients’needs and services offered and provided (Not presented here -see Worrall et al, 2010. JIRCD)

9. Research methodology • Participants: • People with aphasia (51) at least 2 weeks post-stroke • Family members (49) • Speech pathologists (36) • Separate semi-structured in-depth interviews • Adaptedtechniques for people with aphasia

10. Topic guide for people with aphasia and family members • Experiences of having aphasia/ family member having aphasia • Priorities/goals at different points post-onset • Aphasia rehabilitation and services experiences • Aphasia services would have wanted

11. What are the goals of people with aphasia? Worrall et al, 2010 Aphasiology. 1. Return to pre-stroke life 2. Communication – broad and specific, confidence, connected to real life 3. Information – about aphasia and stroke, about therapy 4. Control and independence 5. Dignity and respect 6. Social, leisure and work 7. Altruistic and contribution to society 8. Physical function and health “No. Needs, yes, but talk… my [points to head], I want to talk is politics and religion.” “She [outpatient speech therapist] never had a plan. …What are your [the therapist’s] goals? Never have any…An hour…This this this this. “Time’s up. You’re finished” … [therapist] may have had goals, but I didn’t see them…Know the goals help you relate to the subjects.” “Once you’ve got a name for something, it’s like you’ve got half the problem sorted. You can chase things and you can do things. You mightn’t be able to cure it and everything else but you can understand it more.” “Upstairs, very smart. Downstairs, crap” [pointing to his head and then his mouth]

12. What do family members of people with aphasia want? (Howe et al., 2012. IJLCD) A. For themselves B. For the person with aphasia

13. 1. Information 2. Support A. What family members’ want for themselves 4. Own space & time 3. Way to communicate with individual 5. To be included in rehab 6. Hope

14. 1. Survival 2. Communication B. What family members want for person with aphasia 3. Being independent/ Handling emergencies 4. Social 5. Stimulation/ Meaningfulness

15. People living with aphasia told us… • They had good and bad experiences of aphasia rehabilitation (Tomkins et al., 2013, Aphasiology,) • Their experiences of the health system after the stroke were very important to them. The journey was important. • There was variability in aphasia services • There was no “road map” or pathway for what would happen to them

16. Better pathways for people living with aphasia This project is funded by NHMRC Grant # 569935 (CCRE in Aphasia Rehabilitation)

17. Australian Aphasia Rehabilitation Pathway Aim of the Australian Aphasia Rehabilitation Pathway To improve the overall journey for people living with aphasia by developing a rehabilitation pathway within a knowledge transfer framework

18. What is a pathway? • A pathway is a tool that promotes organised and efficient patient care based on the best available evidence and guidelines. • A pathway aims to deliver the recommended care to the right person at the right time. • Other terms: • Integrated care pathways • Clinical pathways • Patient journeys • Care maps (Kwan et al., 2004)

19. Terminology • Knowledge Translation (KT) is the process of improving the uptake of knowledge, or evidence, into practice - with the ultimate aim of improving clinical outcomes.

20. Knowledge Inquiry Knowledge Synthesis Products Tools Knowledge synthesis • To enhance knowledge uptake, the evidence needs to be: • Synthesized • User-friendly The knowledge creation triangle of the Knowledge-to-Action process (Graham et al., 2006)

21. Has aphasia evidence been synthesized? Systematic review (Rohde et al, 2013) to determine if there were any existing quality clinical guidelines available for stroke and aphasia. • AGREE II tool • 19 multidisciplinary stroke and speech pathology specific clinical practice • ADAPTE Collaboration tool

22. Systematic Review Results

23. Systematic review results Highest in both AGREEII and ADAPTE evaluations • The Australian Clinical Guidelines for Stroke Management (2010) • New Zealand Clinical Guidelines for Stroke Management (2010) Most comprehensive • The Royal College of Speech and Language Therapists (2005) aphasia guideline • ASHA Aphasia Maps Therapy focused • Evidence-Based Review of Stroke Rehabilitation (Salter et al., 2008) • ANCDS evidence reviews (Beeson & Robey, 2006)

24. Conclusions from systematic review • No high quality aphasia clinical guidelines across the continuum of care exist • High quality stroke clinical guidelines contain relevant recommendations for aphasia rehabilitation. • Collated recommendations from the Australian/NZ stroke clinical guidelines form the basis of our pathway

25. The tool - The Australian Aphasia Rehabilitation Pathway

26. How are we developing the pathway? • A community of practice (CoP) approach to Knowledge Transfer & Exchange • CCRE Aphasia Community of Practice: • 12 investigators • 24 research affiliates • 33 doctoral students • 200 clinical affiliates • Consumer reps from AAA • Reps from NSF • Three initial face to face meetings + emailed versions of the AARP for comment using Google documents

27. SWOT analysis

28. Overview of the Australian Aphasia Rehabilitation Pathway (AARP)

29. Within each section RECEIVING THE RIGHT REFERRALS

30. Within each section – Summary

31. Within each section – Recommendations and ideal practice

32. It includes resources

33. Current status of pathway • Further consensus will use the RAND/UCLA Appropriateness Method (RAM) • Go live date - end of 2013 • More systematic reviews are needed in specific topic areas • The perspectives of consumers and expert clinicians will be collected through the Community of Practice

34. Benefits of KTE via community of practice • Buy in - increases the chances of uptake • Relevance to the workplace – regular use will improve sustainability • Creates dialogue between researchers and stakeholders that flows both ways – identifies evidence gaps and priority research questions

35. Challenges • The Community of Practice is a new way of working – not fast. • Synthesis of evidence is hard. • Making evidence into useable and meaningful tools is challenging. • Some practice areas have very little research published. • Levels of evidence are not always high. • The creation of a pathway does not mean that it will be implemented - whole new area of research into what works.

36. Our current research • Identify the top evidence gaps in aphasia rehabilitation • Identify the top evidence practice gaps in aphasia rehabilitation in Australia • Identify barriers to implementation of the AARP • Develop evidence-based tailored strategies to overcome barriers • Evaluate the uptake and effectiveness of the AARP • Measure the overall impact on aphasia rehabilitation in Australia via a pre-post national clinician’s survey (See Rose et al (in press, IJSLP) for pre- pathway survey results)

37. Aphasia LIFT This project is funded by NHMRC Grant # 569935 (CCRE in Aphasia Rehabilitation)

38. Background • Worrall & Copland - UQ Aphasia LIFT = Language Impairment and Functioning Therapy • Cherney – RIC Intensive Aphasia Program • ICAP = Intensive (5 days a week) Comprehensive (includes all recommendations) Aphasia Program (time limited cohort)

39. International survey of Intensive Comprehensive Aphasia Programs (ICAPs)(Rose, Cherney & Worrall, in press. Topics in Stroke Rehabilitation) • How many and where? • 12 programs met definition – USA 8, Canada 2, Australia 1, UK 1. • University 8, Health care facilities 3, Independent 1. • How many years in existence? • 1 to 20 years (Mean: 4.6 years) • How many ICAPs per year? • 1-12 ICAPs annually (Mean: 3.13)

40. ICAP Survey How many people with aphasia? • On average 6 people with aphasia attend each ICAP (range= 3-10) Intensity and dosage? • Average 4.75 hours of ICAP service per day and this ranged from 3 to 7 hours • 3 to 6 days per week (Mean: 4.5) -12-33 days in total (Mean: 21) • Over an entire ICAP program, a person with aphasia received from 48-150 hours of service (Mean: 101)

41. Intensive Comprehensive Aphasia Program (ICAP) Common Core Values • Aim to enhance life participation • Compassion, respect, positive outlook • Involvement of family/friends • Individualised treatment goals • Evidence-based interventions • Neuroplasticity principles Service Delivery • Minimum of 3 hrs/day, 5 days/wk, 2 wks • Completed by a cohort • Targets impairment and activity/participation • Individual therapy • Group therapy • Patient/family education

42. Therapeutic effect of an intensive comprehensive aphasia program: Aphasia LIFT Amy Rodriguez, Linda Worrall, Eril McKinnon, Brooke Grohn, Kyla Brown, Sophia Van Hees, Jade Dignam, David Copland (in press) Aphasiology This project is funded by NHMRC Grant # 569935 (CCRE in Aphasia Rehabilitation)

43. Background to LIFT • Current driving forces in aphasia rehabilitation in Australia • Principles of neuroplasticity - use or lose it, use it and improve it, intensity matters, saliency matters, repetition matters, specificity matters (JSHR, 2008) • Stroke clinical guidelines recommend tailored information, collaborative goal setting, comprehensive assessment, intensive treatment, family involvement, counseling, discharge planning • Strong demand for services in the chronic phase

44. Design • AIM: To determine the therapeutic effect of Aphasia LIFT on language impairment, functional communication, and communication-related quality of life • Pre-post group design • Three LIFT cohorts combined to establish a single data set LIFT 1 LIFT 3 LIFT 2 20 hrs/wk 2 wks 17 hrs/wk 3 wks 25 hrs/wk 4 wks

45. Participants • Eligibility Criteria • At least 6 months post onset LCVA with aphasia • No additional neurological disorders • No uncorrected sensory deficits • English speaking

46. Aphasia LIFT (Rodriguez et al., Aphasiology) A positive approach Partnership with family and friends Neuroplasticity-based individual treatment • Collaborative goal-setting • Training, support, and education • Intensity Matters • Salience Matters • Repetition Matters • Supportive, aphasia friendly environment • Challenge task

47. Treatment Goals Daily Impairment hour • skill-based: word retrieval, AOS • context-based: conversation, role-playing, supported communication Daily Functional hour Challenge goal Daily Group hour • aphasia education, information exchange, living with aphasia, topic talk, “next steps” Last day Challenge Task Daily Computer hour • word retrieval, conversational scripting • Work skill, cooking demonstration, TV interview

48. Outcome Measures • Functional • Communication • CETI Communication- related QOL ALA (Assessment for Living with Aphasia) • Language Impairment • BNT • Discourse Assessment at pre-treatment, post-treatment and 4-8 weeks follow-up

49. Results • 95% program completion rate • 97% hours completed

50. Results • Impairment level • Great deal of individual variability (Code et al., 2010; Brindley et al., 1989; Mackenzie, 1991) • Small but significant change in naming • Severity was an important factor • Small but significant change in discourse efficiency