Why? 5/7/2015 OUR SIMPLE OBJECTIVE. Barriers in Access to Care. The Who, What, Where, When, Why, and How of collecting outcomes. using the MPAI-4.

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1 Measuring Post-Acute Brain Injury Outcomes through a Collaborative, Web-based Database Shannon Swick, MA, LLP Vicki Eicher, MSW Diane Gutierrez, MEd OUR SIMPLE OBJECTIVE The Who, What, Where, When, Why, and How of collecting outcomes using the MPAI-4. NASHIA Conference October, 2013 Barriers in Access to Care Why? Why is the collection of Outcomes Data so important? A. Shift from patient-centered to payerdriven health policies B. Detrimental public policy which was primarily acute care focused C. Lack of data-driven standards of care 4 Shift from Patient Centered to Payer Driven Healthcare Shift from health insurance policies, which focused on reimbursement for needed medical services, to managed care policies, which focused on health maintenance and cost containment, resulted in less care for individuals with acquired brain injury, and more family & societal burden. The focus was on short term care with treatment & payment caps There was no investment in long term care since caps limited the investment Outright denial of rehab services for persons with static or progressive conditions (MS, stroke, SCI) Exclusion of cognitive therapy 5 Detrimental Public Policy Public policy changes have also added to the rehabilitation funding barriers: As the Private Sector impacted access to care, the public sector (e.g., CMS) followed suit, by capping benefits, and restricting access. Medicare Guidelines are followed by a large majority of commercial insurers and Tri-Care 6 1

2 Resulting Changes The combination of a shift to managed care and resulting public policy has effectively done the following: 1. Reduced access to care for individuals with brain injury 2. Increased familial burden of care 3. Increased financial burdens for families 4. Increased financial burden in the public sector via shifting costs to the public sector 5. Meanwhile, State Medicaid programs already struggle with funding for people with BI, and with being able to marshal the resources to fund adequate programming to decrease disability 7 Where do we go from here? A way to combat the lack of access to care and reduced funding is to advocate for changes to public policy and challenge cost containment strategies by insurers. To effect this, we need data to support these efforts. However, the lack of data is in fact a significant barrier in the post acute arena. To move forward and erase these significant barriers, we need to collect data that provides information regarding the utility of rehabilitation and sets the stage for development of clear standards of care in post acute brain injury. 8 Collaborative Outcomes Data System 9 Move the post acute rehab community to a standard measurement tool (like TBIMS) Allows us to determine care guidelines Allows providers to benchmark their performance Provides funders with an objective measure of progress with allows them to determine on-going funding Clearly indicates the impact of rehabilitation Gives us the data we need to advocate for access to care and appropriate levels of funding The National Database: First step in a solution OutcomesInfo system was developed as part of a NIH/NIND grant OutcomesInfo Database is a secure, web-based system Organizations can access their information at anytime Organizations can compare their own data with National averages (Collaborative reports) which reflect the deidentified data for similar populations Cost effective Pooled data set will be large enough to have a significant impact for advocacy Why we have chosen the Mayo Portland Adaptability Inventory 4 Effective clinical tool as well as an outcomes measure Easy to use and easy to score Open access, don t have to pay to use (COMBI) Proven Reliable and Valid Allows us to track patients long term 2

3 Why we have chosen the Mayo Portland Adaptability Inventory 4 All Providers collect similar demographic information, using a data dictionary to support consistent interpretation of items. All Providers administer MPAI-4 at standard intervals At Admission At Discharge At Transitions (change of service/program type) At a minimum of every 6 months MPAI-4 scores are converted to T scores to allow for statistical analysis and comparison to national norms. MPAI 4 Demographics Collected at initial, interval, transition and discharge stages: Personal: name, funding, military experience, referral info., coma/injury info. Medical: diagnoses, hospitalizations w/in rating period Services at time of admission: current setting Psychological: psych diagnosis, psych hospitalization Vocational/Educational: education level, employment history Program Registration: assigned program, hours of supervision, therapy hours T Scores above 60 T Scores T Scores T Scores T Scores below 30 MPAI-IV T-SCORE INTERPRETATION = Severe Limitations = Moderate to Severe = Mild to Moderate = Mild = Good Outcomes T Scores between are typical/average for ABI persons in outpatient, community based and/or residential rehabilitation. (Reference: MPAI-4 Manual) Examples of Outcomes for Persons with Brain Injury Improved / maintained function and skills Return to home and community settings Going back to work Participating in enjoyable lifestyle activities Satisfaction with the results they got from us Satisfaction with our staff and our services Improved quality of life Satisfaction with life Continuing to improve after discharge Good health Impairment, Disability, Handicap Reduction MAYO-PORTLAND ADAPTABILITY INVENTORY (MPAI-4) WHAT AND HOW What is the MPAI-4? How do you administer this tool? Focuses on Function 29 items + 6 non-scored items The lower the score, the less severe the consequences of brain injury and the fewer the limitations Statistically Valid & Reliable Normative data based on 2 samples National and Mayo Clinic of individuals w. ABI On COMBI ( Selected as one of TBI Global Outcomes Common Data Elements 3

4 MAYO-PORTLAND ADAPTABILITY INVENTORY (MPAI-4) Clinical staff group consensus is recommended/preferred Can be administered by individual clinician, person w brain injury, or significant other Case manager can facilitate the meeting and collect the clinical staff members/group consensus information MAYO-PORTLAND ADAPTABILITY INVENTORY (MPAI-4) 81 page manual to ensure consistency Detailed descriptions of items and scoring procedures can be found in the manual. See specific page numbers below. Three Subscales Ability Index (pg 7 19) Adjustment Index (pg 20 28) Participation Index (pg 29 38) MPAI-4 SUBSCALE ABILITY INDEX MPAI-4 SUBSCALE ADJUSTMENT INDEX Mobility Use of Hands Vision Audition Dizziness Motor Speech Verbal Communication Nonverbal Communication Attention /Concentration Memory Fund of Information Novel Problem Solving Visuospatial abilities Anxiety Depression Irritability, anger, aggression Pain and headache Fatigue Sensitivity to mild symptoms Inappropriate social interaction Impaired Self Awareness Family/Significant relationships Initiation Leisure and Recreational Activities Self Care Residence MPAI-4 SUBSCALE PARTICIPATION INDEX Transportation Paid Employment Other Employment Managing Money and Finances Social contact with friends, work associates and other people who are not family, significant others or professionals MPAI-4 PRE-EXISTING & ASSOCIATED CONDITIONS (PRE & POST INJURY) Alcohol Use Drug Use Psychotic Symptoms Law Violations Other Condition Causing Physical Impairment Other Condition Causing Cognitive Impairment 4

5 MPAI-4 PRE-EXISTING & ASSOCIATED CONDITIONS Evaluation for pre-existing conditions should be completed upon admission: If additional information is gathered after admission that indicates a pre-existing condition, this section should be updated. Reference the MPAI-4 manual for a breakdown of scoring requirements (pg ). 0= None GENERAL GUILDLINES FOR SCORING ITEMS ON THE MPAI-4 1= Mild problem but does not interfere with activities; may use assistive device or medication (less than 5%) 2= Mild problem; interferes with activities 5-24% of the time 3= Moderate problem; interferes with activities 25-75% of the time 4= Severe problem; interferes with activities more than 75% of the time *It is appropriate to reference the manual while scoring. SPECIAL CONSIDERATIONS WHEN SCORING MPAI-4 Indicate the greatest level of performance that is appropriate Scores should represent the client s current level of functioning whether or not you believe it is a direct result of brain injury WHO WHEN If clients achieve normalcy as a result of medication or assistive device, they receive a score of 1 Who will be assessed? How often? Building a collaborative among provider groups. THE PARF PROJECT (PA Association of Rehab Facilities) In 2004, PARF began a collaborative data collection and outcomes measurement project with PA & NJ providers designed to: Enhance clinical evaluation Verify the treatment provided produces the desired outcomes Allow providers to make better decisions regarding program/service components Provide aggregate data to States to assist with evaluation of needs and services COLLABORATIVE PROCESS All Providers collected similar demographic information, using a data dictionary to support consistent interpretation of items All Providers administered MPAI-4 at standard intervals - At Admission (3-4 wks post admit) - At Discharge - Every 6 months for long term participants Using MPAI-4, progress was compared on 2 consecutive assessments MPAI-4 scores were converted to T scores Data entered into OutcomeInfo, a secure, webbased database 5

6 OVERVIEW OF STUDY 2009 aggregate PARF Outcomes data Represents 604 clients from 7 post-acute brain injury providers in PA and NJ Objective of Study was to compare progress in 4 types of BI post acute rehabilitation programs Providers agreed to have the group s de-identified data submitted to Dr. Malec, Rehab Hsp of Indiana (RIH) for analysis Study was reviewed and approved by Indiana University s IRB DESCRIPTIVE STATISTICS Average age on program admission was years (SD = 12.78; range yrs) Average years post injury on admission was over 7 years (SD = 8.4; range <1 yr 47 yrs) The majority (69%) of the sample were male and 31% female Disease (e.g. Stroke, Tumor, Inf ection, CVA, etc.) 13% DESCRITPTIVE STATISTICS 2009 PARF Participants Type of Injury Open 6% Anoxia 6% (N=604) Other 2% CAUSE OF INJURY STATISTICS Sports 1% Toxic/Chem 1% OD 1% GSW 2% Assault 4% Other 9% Closed 73% MVC 51% Fall 15% Disease 16% 2009 PARF PARTICIPANTS TYPE OF FUNDING (N= 604) PROGRAM TYPES DOD/VA 1% Workers Comp 17% Public (PA & NJ) 51% Auto 18% Health Insurance 5% Other 4% Private Pay 4% Participants classified by Type of Program: Intensive Rehabilitation Residential = IRR Supported Living Residential = SLR Intensive Rehabilitation Outpatient/Community-based = IRC Supported Living Community-based = SLC 6

7 DESCRIPTIVE STATISTICS PROGRAM SPECIFIC DEMOGRAPHICS The majority of the sample were enrolled in: Supported Living Residential (N = 246) 40.7% Other participants were enrolled in: Intensive Rehabilitation Community-based (N = 235) 38.9% Intensive Rehabilitation Residential (N = 78) 12.9% Supported Living Community-based (N = 45) 7.5% Intensive Rehabilitation Residential Supported Living Residential Intensive Rehabilitation Community-based Supported Living Community-based Sex-Female Age on Admission Chronicity Yrs. Post Injury 21% years 5.1 years 25% years 9.1 years 42% years 6.0 years 27% years 6.8 years 2011 Special Tree Rehabilitation System The Science of Caring 2011 Special Tree Rehabilitation System The Science of Caring FINDINGS COMMENTARY IRR: more severely disabled overall, notably worse on the Adjustment index IRR: although started with a worse adjustment rating, by second rating, had improved to level equivalent with supported living clients IRR & IRC: showed significant improvement from first to second MPAI-4 on all indices Supported Living clients did not change significantly from first to second MPAI-4 Even though early intervention results in good improvements, this study highlights that even in a more chronic group, significant improvements are evident Supported living clients demonstrated no change or remained stable, which is the goal for this population Participants in supported living are thought to be more at risk of decline without services, but this is difficult to study. Further study within the supported living group is recommended to determine impact of service intensity and aging/medical variables on functional status. 7

8 ACKNOWLEDGMENTS Study was supported by Phase I & Phase II of STTR grant from the Nat l. Inst. Health/Nat l. Inst. For Neurologic Diseases The following organization members of the PARF Outcomes Collaborative contributed data to this study: Acadia, Bancroft NeuroRehab, Beechwood, Community Skills, Rehab Specialists, ReMed and Success Rehabilitation WHERE Where is all of this information entered? ver. 12 ver. 12 ver. 12 ver. 12 8

9 ver. 12 ver. 12 MPAI Rating Item Detail for Current Ratings vs. First MPAI Rating Item Scores with Rating Explanation Slide #: 51 Slide #: 52 MPAI Rating Chart of MPAI Sub-scale T- Scores Current Outcome Measures in OutcomeInfo System MPAI-4 Mayo-Portland Adaptability Index -4 ABS/BIAF CRS DRS SRS SWLS WHO-QOL Brief Agitated Behavior Scale/Behavior Identification Assessment Score JFK Coma Recovery Scale Disability Rating Scale Supervision Rating Scale Satisfaction With Life Scale World Health Organization Quality of Life Slide #: 53 Slide #: 54 9

10 BENEFITS OF OUTCOMEINFO DATABASE System translates raw scores into T scores to allow for export into Excel and data analysis w SPSS, thus eliminating scoring errors Multiple Reports are available, and can filter results based on variables selected, e.g. age at injury, time post injury, funding type, etc. Larger data set will allow for improved analysis of outcomes, including durability and effectiveness Aggregate data set allows for Benchmarking & Research possibilities Growing The Base How to train new Providers/Clinicians? Slide #: 55 Recommended Training Process for MPAI-4 The following guidelines represent the minimum standards required to ensure all personnel and organizations using the MPAI are doing so in a consistent manner that protects the validity and reliability of the data. It is understood that individual organizations will need and want to develop their own systems for training and implementation. Clinical Training All staff, including direct care staff, who will be part of the ratings process need to be included in a mandatory training. Power Point developed to provide overview and basics of the ratings process. Organizations may chose to add additional slides specific to their client demographic or outcomes information. Organizations are able to run reports and see their own data at any time. Any pooled data reports only have de-identified aggregate data. No organization can see another organization s data. Case Vignettes Training vignettes developed for the therapists and clinical staff responsible for completing the ratings to represent different types of clients; done as a group training. Ratings Manual should be available to the team. Stress the need to reference the manual for full definition of each variable as the key words do not encompass all the details helpful in determining the actual rating. Divide group in half for review of same vignette and completion of accompanying score sheet. Recommended that the group be interdisciplinary. Consensus with an 80% proficiency rating is recommended. Demographics Training Provided to all staff identified who will collect the demographics data. Review the information to be collected on each person served: Admission, Interval, and Discharge Demographic Forms. Data Dictionary needs to be used when completing items on the Demographics form to ensure consistent interpretation of items. It is recommended that all rating staff participate in annual refresher. 10

11 Data Dictionary Funding Type Provides definition for each choice Process for Ratings Implementation Auto Non-Capitated Auto Capitated Worker Compensation Private Pay Health Insurance Veteran s Administration (VA) Department of Defense (DOD) Medicare Other Public: - State Voc Rehab - State Medicaid BI Waiver - MA/Medical Assistance - School - State BI Funds/Non- Waiver - Public/Other MPAI ratings and demographics information should be completed on a consistent schedule within each organization. Organizations can do the ratings scale more frequently, but not less frequently than the identified time frames. Process for Ratings Implementation Admission for post-acute programs, typically 3-4 weeks after admission to ensure all therapy evaluations are completed and accurate evaluation information is obtained. Discharge should be done within 14 days of discharge Interval Ratings for long-term clients, every 6 months Two (2) data points per year are needed to assess stability/change Process for Ratings Implementation Continuum Transfers whenever a client moves from one program type to another within a facility s continuum of service. The Transfer Rating serves as the Discharge score from the one program and the Admit score of the next program. Follow-Up it is recommended that the Participation sub-scale of the MPAI be completed during follow up contacts. Additional Guidelines Some organizations with clients in active rehabilitation with an expected LOS of greater than 3 months, complete MPAI ratings on a quarterly basis to capture change during the rehab process and prior to discharge. If a client is out longer than 30 days, this will be treated as a Discharge, and if the client returns, needs to be re-admitted with a new rating. Clients must receive services for a minimum of 30 days in order to have ratings completed. Recommended Personnel Clinical Oversight/Project Coordinator responsible to train staff, answer questions; ensures data guidelines are followed; develops system to track rating time frames; collaborates with Admissions; generates reports. Operational Person sets up schedule for notifying team members when ratings are due. Data Entry Person enters data elements; collaborates with Project Coordinator to ensure data elements are valid and complete. Raters individuals trained on the tools; ensures consistent interpretation of items during the ratings process. Treatment Team those who are familiar with client and can select the appropriate data elements based on their treatment expertise. 11

12 Outcomes Data Critical to: Demonstrate that Rehab Works!! Identify characteristics of persons served, and services provided Establish industry benchmarks Develop standards of care Allow for Research to further field of BI Rehab Advocate for needed services Impact Public Policy 12