Best Practices: Building Consensus Report of the Aphasia United Working Group

2012 Aphasia United Summit Melbourne, Australia A brief review of Best Practices FROM

Best Practices Defined A benchmark or a standard of how things should be done The “best” that we can do to meet needs of people with aphasia, family members or other stakeholders

Terminology Origins Best Practices = From business models; related to what works best based on experience & products Evidence-Based Practices = From scientific community; derived from push for research evidence of what works best Terms are related and are sometimes used interchangeably

Best practice recommendations versus evidence-based reviews Evidence-based reviews usually focus on level of evidence & require the ‘consumer’ (e.g. clinician, policy maker) to decide what intervention is appropriate, necessary or best in what circumstances (based on evidence) Best practices usually provide a template of what should be provided

Examples EBP review “… caregiver education may be associated with improvement in caregiver stress” ( Best Practice Recommendation “Families of persons with aphasia should be engaged in the entire rehabilitation process, including family education and training…” (Canadian Stroke Best Practices)

Both are needed Evidence-based reviews lead to practice recommendations Practice recommendations tend to be more “user friendly” and can influence policy & funding

Best Practice Guidelines Influence what options are available (pressure on policy makers, health care, etc) Influence what therapists do across the continuum of care Influence what care options people with aphasia and family members choose Influence what administrators include in programs (e.g. staffing ratios, resource allocation) Influence what funders (e.g. government, insurance) pay for Influence research priorities & research funding

What is needed to define best practices? Ideally, development of best practice guidelines requires a consensus among: – Researchers – Service Providers (i.e. speech-language therapists) – Consumers (i.e. people with aphasia & families) – Health care administrators (practices have to be “fit” into an existing health care environment or uptake will not occur) – Policy makers & funders (practices have to have demonstrated value)

What is needed to define best practices? Consensus across borders: Universally applicable recommendations – Considerations of regional, national and cultural variations – Flexibility in how recommendations can be implemented

Aphasia United Summit, 2012 Melbourne, AU Decisions Create an international aphasia best practices working group Work towards consensus on minimal international “best practices” – Identify basic best practices that cut across borders – Obtain input from multiple international stakeholders

Since the 2012 AU Summit 1. A ‘Best Practices Working Group’ was created

Best Practices Working Group Tami Howe University of Canterbury, New Zealand Anu Klippi University of Helsinki, Finland Julie Morris Newcastle University, UK Laura Murray Indiana University, USA Ilias Papathanasiou Technological Educational Inst. of Patras, Greece Stacie Raymer Old Dominion University, USA Miranda Rose LaTrobe University, Australia Nina Simmons-Mackie Southeastern Louisiana University, USA

Since the 2012 AU Summit 2. An overall 3 phase plan was identified – Identify basic recommendations for aphasia management (e.g. simple, written for universal appeal) drawing from evidence & existing guidelines – Obtain consensus from key stakeholder groups – Create an action plan to facilitate uptake of basic best practices internationally

Since the 2012 AU Summit: Where are we now?  Identify basic recommendations for aphasia management drawing from evidence & existing guidelines Obtain consensus from key stakeholder groups Create an action plan to facilitate uptake of basic best practices internationally

Identifying Basic Recommendations Review of existing guidelines, reviews, recommendations, etc. Develop a preliminary draft list of best practices

Process Accessed available guidelines or recommendations for stroke and/or aphasia Identified common themes across multiple guidelines Created ‘generalized’ wording to reflect the shared themes Added recommendations that are not widely represented, but considered ‘critical’ needs

Examples of Guidelines Consulted Australian & New Zealand National Stroke Foundation Guidelines for Stroke Rehabilitation and Recovery, 2010 Canadian Best Practices Recommendations for Stroke Care (section on communication), 2013 Royal College of Speech & Language Therapists, Clinical Guidelines, UK, 2005 US Veteran’s Administration & American Heart Association, Clinical Practice Guidelines for Management of Stroke Rehabilitation, 2005 Scottish Intercollegiate Guidelines on Management of Patients with Stroke, 2010

The Australian Aphasia Rehabilitation Pathway (AARP) will soon be available providing evidence based recommendations across the continuum of care – Will be helpful in identifying what works for whom and when – Likely to be a key link to “flesh out” the Aphasia United Best Practices – See

Aphasia United Best Practices Preliminary List Includes: Practices implemented by a speech pathologist or similar qualified professional General practices required of health care providers

1.All stroke patients should be screened for communication deficits 2.People with suspected communication deficits should be assessed by a qualified professional (determined by country)

3.People with aphasia should receive education regarding stroke, aphasia and options for treatment 4.No one with aphasia should be discharged from hospital/rehabilitation without some means of communicating their needs and wishes (e.g. using AAC, supports, trained partners)

5.People with aphasia should receive intensive and individualized aphasia therapy – This might consist of impairment-oriented therapy, compensatory training, conversation therapy, functional/participation oriented therapy, environmental intervention and/or training in communication supports or AAC – Modes of delivery might include individual therapy, group therapy, telerehabilitation and/or computer assisted treatment

6.Communication partner training should be provided to improve communication of the person with aphasia 7.Families or caregivers of people with aphasia should be included in the rehabilitation process – They should receive education regarding stroke and aphasia – They should learn to communicate with the person with aphasia

8.All health care providers working with people with aphasia should be educated about aphasia and trained to support communication in aphasia 9.Information intended for patient use should be available in aphasia-friendly / communicatively accessible formats

2014 Aphasia United Summit What is next?

To Do? Consensus process to refine and/or modify best practice statements Develop a plan of action to achieve consensus Work to introduce best practices internationally Identify what practices are being implemented internationally? Country by country survey? Identify practical considerations for publicizing & implementing guidelines? Identify barriers & facilitators to implementation in different countries, settings, etc? Identify “priority” recommendations…where to begin?

Provide access to resources – Link best practices to sources of evidence and specifics of practices? What works best for whom under what circumstances? What else? To Do:

Discussion !!!