1. Using Client-Centered Practice & Patient-Reported Outcomes Joy Hammel, PhD, OTR/L, FAOTA Professor, University of Illinois at Chicago Copyright © 2014 Rehabilitation Institute of Chicago. All rights reserved.

2. 2 Objectives 1.What are patient-reported outcomes (PROs)? –What is the theory and research behind them? –How are they defined and assessed? 2.What are some examples of PROs you could use? 3.How do they compare to clinician-rated performance measures? –What do we get from PRO as compared to clinician observation? –Are PROs valuable and worth the extra time to do? 4.How can we use PROs across clients and programs to document outcomes and improve treatment effectiveness?

3. 3 I. Patient-Reported Outcomes: A Growing Trend in Outcome Measurement & Research  Self report, subjective vs. objective  Client-centered practice, goal setting & outcomes  Consumer-directed outcomes & programming  Patient-Reported Outcomes (PRO)  Community-Based Participatory Research (CBPR) & Patient-Centered Outcomes Research (PCOR)

4. 4 Client-Centered Philosophy The goal of the [client-]centered philosophy is to create a caring, dignified and empowering environment in which [clients] truly direct the course of their care and call upon their inner resources to speed the healing process Matheis-Kraft, George, Olinger & York, 1990

5. 5 Client-Centered Philosophy The basic assumptions of client-centered practice are that: –Clients/families know themselves best –Clients/families are different and unique –Optimal client functioning occurs within a supportive family and community context Law, Baptiste & Mills, 1995

6. 6 Why a Client-Centered Philosophy? Clients who set goals achieve better outcomes than those who do not, which may be due to: –Setting goals focuses a person’s attention and directs his/her efforts –Establishing challenging, but realistic goals leads to greater effort and persistence –Challenging goals leads to higher performance vs. just encouraging the person to do his or her best –Setting goals prompts the person to apply or develop his/her skills to achieve the goal (=outcome) –Goal achievement/outcome attainment requires on-going feedback that recognizes the person’s progress toward the goal Locke & Latham, 2002

7. 7 Patient-Centered Outcomes Research (PCOR) Helps people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options. This research answers patient-centered questions such as: –“Given my personal characteristics, conditions and preferences, what should I expect will happen to me?” –“What are my options and what are the potential benefits and harms of those options?” –“What can I do to improve the outcomes that are most important to me?” –“How can clinicians and the care delivery systems they work in help me make the best decisions about my health and healthcare?” From PCORI website: http://www.pcori.org/ ; Jan. 2014http://www.pcori.org/

8. 8 Definitions Related to Patient-Reported Outcomes  Patient-Reported Outcome (PRO): Self report of the status of a patient’s health condition that comes directly from the patient (or in some cases a caregiver) –TO ASSESS INDIVIDUAL STATUS & SET GOALS  PRO Measure (PROM): A validated instrument, scale, or single-item measure used to assess the PRO as perceived by the patient –TO DOCUMENT INDIVIDUAL OUTCOMES OVER TIME  PRO-based Performance Measure (PRO-PM): A performance measure or system that is based on PROM data aggregated for a health care entity –TO DOCUMENT SERVICE/PROGRAM OUTCOMES ACROSS PEOPLE –TO DOCUMENT IMPACT & EFFECTIVENESS (Basch et al 2013)

9. 9 II. Examples of PRO to assess Activity & Participation  Canadian Occupational Performance Measure (COPM) (Law M, Baptiste S, Carswell A, McColl M, Polatajko H, Pollock N (2005). Available through: http://www.caot.ca/copm/index.htm) http://www.caot.ca/copm/index.htm  A PRO to identify client issues and goals in three areas of functioning –Self Care –Productivity –Leisure

10. 10 Canadian Occupational Performance Measure: Initial assessment example for John

11. 11 COPM: Going from PRO to PRO-M Canadian Occupational Performance Measure (COPM) has been validated as a PRO-Measure over many years across thousands of clients across Canada –Validated to show changes over time and goal attainment (performance, satisfaction) from client perspective –Could also be used to compare family/significant other’s or clinician’s ratings to client’s  See Canadian Association of Occupational Therapy for links to published research on specific populations).

12. 12 Another PRO: Example of Self Report Items in Activity Card Sort (ACS) (Baum et al, 2008)

13. 13 Community Participation Indicators (CPI): Self Report on Participation

14. 14 CPI -2 (participation enfranchisement)

15. 15 III. Comparing PROs to Clinician Rated Measures Two tests chosen to determine fall risk: Berg Balance Scale:  Clinician Rated  14 item static and dynamic balance measure  Items include sitting to standing, standing balance, turning, stepping onto a stool, reaching to the floor, etc.  Score < 45 indicates fall risk Activities Specific Balance Confidence (ABC) Scale:  Patient Reported  16 questions that determine a patient’s confidence in his or her balance during specific activities  "How confident are you that you can maintain your balance and remain steady when you....” –Walk inside –Walk outside –Pick things up –Etc.  Scores < 67% indicates a risk for falling

16. 16 Case Example: Comparing Patient- Report to Clinician Rated Measures Activity-Specific Balance Confidence Scale (PRO) results:  Example answers are below: "How confident are you that you can maintain your balance and remain steady when you....” –bend over and pick up a slipper from the front of a closet floor? 90% –walk up or down stairs? 100% –are bumped into by people as you walk through the mall? 80% –stand on a chair and reach for something? 30% –walk outside on icy sidewalks? 30%  Score of 74% from John indicates the patient rates himself as NOT at risk of falls

17. 17 Case Example: Comparing Patient- Report to Clinician Rated Measures Berg Balance Scale results:  Score of 41/56  Indicates at risk for falls  Sample Item: Reaching to Floor 4) Able to pick up slipper safely and easily 3) Able to pick up slipper but needs supervision 2) Unable to pick up but reaches 2-5 cm (1-2 inches) from slipper and keeps balance independently 1) Unable to pick up and needs supervision while trying 0) Unable to try/needs assist to keep from losing balance or falling http://youtu.be/pCkTXaVGlP4

18. 18 Comparing Patient-Report to Clinician Rated Measures  Mismatch between patient’s confidence in his/her balance and actual abilities –Berg Item, reaching to the floor: received a 0, unable to try/needs assist to keep from losing balance or falling –ABC Scale response: bend over and pick up a slipper from the front of a closet floor? 90% confidence he could do it without losing balance  Yet, patient has some self awareness of particularly threatening activities: –Stand on a chair and reach for something? 30% confidence –Walk outside on icy sidewalks? 30% confidence  Clinical Implications?

19. 19 Another Falling PRO example… FALLS EFFICACY SCALE-INTERNATIONAL (FES-I) “How concerned are you that you might fall if you did this activity…” Not at all Concerned 1 Somewhat Concerned 2 Fairly Concerned 3 Very Concerned 4 1.Cleaning the house (e.g. sweep, vacuum, dust) 1234 2. Getting dressed or undressed 1234 3. Preparing simple meals 1234 4. Taking a bath or shower 1234 5. Going to the shop 1234 6. Getting in or out of a chair 1234 7. Going up or down stairs 1234 8. Walking around the neighborhood 1234 9. Reaching for something above your head or on the ground 1234 10. Going to answer the telephone before it stops ringing 1234 11. Walking on a slippery surface (i.e. wet or icy) 1234 12. Visiting a friend/relative 1234 13. Walking in a place with crowds 1234 14. Walking on an uneven surface (e.g. rocky ground, poorly maintained pavement) 1234 15. Walking up or down a slope 1234 16. Going out to a social event (e.g. religious service, family gathering or club meeting) 1234

20. 20 Case Example 2: Comparing PROs to Clinician Rated Measures Test chosen to determine cognitive executive functioning impact on performance: Executive Functioning Performance Test (EFPT) http://youtu.be/G9VLLmKAAv8

21. 21 EFPT data-1 (self report items)

22. 22 EFPT data-2 (actual task clinician rating)

23. 23 EFPT data-3 (summary & clinical implications)

24. 24 Comparing Patient-Report to Clinician Rated Measures: The Need for Both “Patient reported and clinician rated measures may only be weakly correlated. Therefore, the two types of measures may reflect different attributes of the construct. It is important to administer BOTH when possible to make an accurate determination of the patient’s ability and recommendations for care.” (Robinson et al, 2011)

25. 25 Comparing Patient-Report to Clinician Rated Measures: The Need for Both What’s the added value of PROs?  Assess self-awareness (and/or caregiver & family awareness)  Assess confidence/self-efficacy which is predictive of and can lead to improved behavior or performance (Bandura Self-Efficacy Theory)  Can easily translate into client-centered goals so you can measure changes in PROs over time as another outcome indicator

26. 26 Added value of PROs (cont.) Assess “readiness to change” or “patient activation” so you can better tailor interventions to fit client needs & motivations  Example: Patient Activation Measure (PAM) (Hibbard JH, Stockard J, Mahoney ER, & Tusler M (2004). Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers. Health Serv Res., 39(4 Pt 1): 1005–1026.

27. 27 Added value of PROs (cont.) Assess global and specific changes in overall quality of life (QOL) or life satisfaction as yet another outcome indicator  Example: WHO-QOL (Brief): http://www.who.int/mental_health/media/en/76.pdf http://www.who.int/mental_health/media/en/76.pdf 1. How would you rate your quality of life? 1 2345 1 Very dissatisfied 2 Dissatisfied 3 Neither satisfied nor dissatisfied 4Satisfied 5Very satisfied 2. How satisfied are you with your health? 1 2345 Followed by specific items related to QOL on physical health, psychological health, social relationships & environment (finances, safety, housing, info access, etc.) ­Note: Choose QOL assessments with items specific to what you are trying to impact (e.g., health, community living, social participation, etc.); otherwise difficult to see change

28. 28 Common Misperceptions about PROs versus Clinician Ratings (CR) Common misconceptions about clinician-rated (CR) performance assessments: They are not… –more valid than self report (SR) PRO measures –more reliable than SR PRO measures –objective, and patient-report is not only subjective but instead they measure different things  e.g., actual performance versus confidence/self-efficacy/belief in self = Want to select PROs that have been validated for use with your target population

29. 29 Finding Validated PRO Resources  The Rehabilitation Measures Database (RMD): http://www.rehabmeasures.org/default.aspx http://www.rehabmeasures.org/default.aspx  The Stanford Patient Education Research Center: http://patienteducation.stanford.edu/research/ http://patienteducation.stanford.edu/research/ –Chronic Disease, Arthritis, Diabetes –Self management, self efficacy-assessment tools, and links to many PRO assessments related to managing chronic conditions

30. 30 A PRO Resource & Measurement System PROMIS: Patient Reported Outcomes Measurement Information System: http://www.nihpromis.org/http://www.nihpromis.org/

31. 31 PROMIS & Assessment Center Resource Assessment Center: http://www.assessmentcenter.net/http://www.assessmentcenter.net/

32. 32 What’s going on now and in the future with PROs and PRO-PMs?  PROMIS links to several other PROs specific to different target populations –NeuroQOLNeuroQOL –NIH Toolbox (some self-report) –Mood & Anxiety Symptom Questionnaire (MASQ), SF-36, Brief Pain Inventory, CES-D, FACIT-Fatigue  PROsetta Stone –Links PROMIS with other related instruments to expand the range of PRO assessment options within a common, standardized metric and provide equivalent scores for different scales that measure the same health outcome.PROMIS

33. 33 Future Patient-Centered Outcomes Research & Initiatives Patient-Centered Outcomes Research Institute (PCORI): http://www.pcori.org/http://www.pcori.org/ –Mission: PCORI helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community –Vision: Patients and the public have the information they need to make decisions that reflect their desired health outcomes PCORI does this by supporting studies that seek to answer questions important to patients and meaningfully involve patients and others across the healthcare community at all stages of the research process

34. 34 Summary: Integrating PROs into Outcome Planning INDIVIDUAL: To show client status at specific points in time (intake, weekly, discharge) –To predict client recovery or to plan interventions –To assess client readiness to change –To document client outcomes and change over time –To proactively do discharge planning from time of intake forward, and to ensure effective services across the continuum of care –To proactively order needed assistive technologies or equipment, or to plan ahead on environmental modifications to transition home –To make referrals to other professionals and services or for long term supports and community resources

35. 35 Summary: Integrating PROs into Outcome Planning PROGRAM/POPULATION: To show outcomes ACROSS clients –Predict recovery and plan treatment (prediction)  E.g., which course of therapy would work best for this type of client given what we know? What kind of supports might this type of client need to benefit most? –Measure change in outcomes over time (impact evaluation)  E.g., how effective is therapy/ies in showing improved outcomes that can be sustained post rehab? How satisfied are consumers with rehabilitation & its long term impact on their participation & QOL? –Measure cost effectiveness and benefit of services to justify delivery & show consumers what works so they can make informed choices  Benchmark your program outcomes with others with similar clients –To identify population level disparities in health care to inform policy and systems changes and improve access for people with disabilities as a social group