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Measuring the Impact of Early Intervention
Programs for First Episode Psychosis:
Experiences and Lessons Learned from
Oregon and Maryland
December 16, 2014
Oregon Early Assessment
and Support Alliance
Tamara G. Sale, MA
Oregon Early Assessment and
Support Alliance
• Introduction to EASA
• How we have approached data and evaluation
• Uses
• Data categories and elements
• Considerations in data collection & evaluation
• National & international collaboration opportunities
Oregon Early Assessment and
Support Alliance
• Created 2001 by five-county mental health authority (MidValley Behavioral Care Network or MVBCN)
• Data system created 2002
• Statewide implementation began 2007
• 23 counties with over 90% of population;
• 9 rural counties implementing; 4 remaining
• Portland State University EASA Center for Excellence in
2013- reconstructing data infrastructure
• New state data system (Measures & Outcome Tracking
System or MOTS)
• Goal to replace and enhance data items
Early psychosis intervention
concepts and goals
• Engaging individuals in early stages of psychosis
• Reducing delays in treatment
• Preventing unnecessary hospitalization & disability
• Evidence-supported treatment
• Improved individual functioning and symptoms
• “Triple Aim”: Better quality, better population health,
better use of dollars (Institute for Health Care Improvement,
http://www.ihi.org/Engage/Initiatives/TripleAim/Pages/default.aspx)
EASA Eligibility
• Goal: change trajectory for all teens and young
adults who begin to develop schizophrenia or
schizoaffective disorder in Oregon
• Schizophreniform and bipolar spectrum first episode
psychosis going back to 12 months
• Core age range 15-25; some below and some over
• Added psychosis risk syndrome 2010
• All payors
EASA Services
• Community education
• Outreach and proactive engagement, rapid access
• Assessment and consultation
• Diagnostic, holistic strengths & needs/developmental goals,
comprehensive risk & safety planning
• Transdisciplinary team (credentialing process)
• Individualized planning, intensity
• Vocational support (IPS model)- work & school
• Family education and support (multi-family groups and single
family)
• Occupational therapy- cognitive, sensory, functional needs
• Medical- prescribing, psychoeducation, nursing, wellness
• Counseling & psychoeducation including alcohol & drug
treatment (motivational interviewing, cbt)
• Participatory decision making & transition
How EASA Data is Used
• Accountability:
• Transparency around community education efforts , referrals, utilization,
fidelity
• Quality improvement:
• Cross-county and intracounty comparisons of referral patterns, intakes,
fidelity, outcomes, discharge info over time
• Benchmarking of key indicators for improvement efforts
• Convene routinely by phone and periodically in conference where data is
shared and goals are discussed
• Review of data by program participants and graduates to help design
improved interventions and policies (Young Adult Leadership Council)
•
Sustainability efforts & program development
• Changes in insurance and utilization; costs vs. resources, testing
assumptions around financial modeling; recognizing variability
in resources based on population
• State, Association of County Mental Health Programs, program directors
How Data Is Used
• Legislative communication
• Hospitalizations, school/work
• Utilization by community
• Narrative stories through direct testimony & anecdotes
• Department of Justice Olmstead
• Number served
• Informing research/improvement questions & design
• Data pulls focused on specific questions
• Examples: relationship between substance abuse, legal involvement and
hospitalizations; impact of clinician turnover on outcomes; profiles of who
disengages early
• Informing articles and networking with other sites
(learning health care)
Example of Data Uses (legislative
reports)
Percent in School or Working, Individuals Discharged
from EASA at 12 months or Longer (n=522)
60
Discharge, 56
50
Admit,
44
40
Admit, 33
30
Discharge,
24
Discharge, 23
20
Admit, 8
10
Discharge, 9
Admit,
2
0
School only
work only
School & work School or work
EASA Measurement Methods
• Staff credentialing database- training, supervision, review of
documents
• Program fidelity review process measuring consistency with
practice guidelines: direct interviews, chart reviews, focus groups
• Clinician-completed forms:
• Entered remotely; able to access historical data; repeated data fields fill in
automatically (i.e. admit date)
• Community education
• Referrals (source, demographics, eligibility criteria)
• Intakes (demographic, functional data)
• Quarterly outcome reviews (diagnosis, service, demographic & functional
data; reason for discharge)
• State data system: specific services
• Periodic surveys, focus groups, targeted research
• Administrative data (hospital databases, MOTS,
agency billing, etc.)
EASA Core Measures
• Engaging individuals
• Number referred and intakes by county
• Penetration: Number entering with demographics
• Accuracy: Diagnosis
• Reason for discharge (drop-outs)
• Would like to look at people who don’t get referred
• Preventing delays
• Source of referral (non-crisis/outside mh)
• Timing of referral to intake
• Difficulty finding: Pathway to care (qualitative)
• Delay in care: Duration of untreated psychosis
Core Measures
• Evidence-supported treatment methods
• Fidelity review and credentialing process
• Continuity of care (clinician turnover, hospitalization
outreach, transition planning)
• Sustained or improved short-term and long-term
functioning
• School, work, living situation, substance use, legal
involvement, hospitalizations, insurance, disability
status
• “Triple Aim”: Better quality, better population
health, better use of dollars
• Reduced hospitalizations
• Cost/utilization study
International Consensus Measures
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Acceptability
Accessibility
Appropriateness
Continuity
Effectiveness
Competence
Efficiency
Safety
Addington et al. (2005). Performance measures for early
psychosis treatment services. Psychiatric Services, vol 56 no
12, p. 1570-1582.
International Consensus Measures
• Acceptability- satisfaction, complaints,
involvement in decision making
• Accessibility- waits, reach, access by
homeless, psychiatry, primary care, open
referral, reducing barriers, perceptions of
access, duration of untreated psychosis, point of
first contact; (EASA- insurance status)
Addington et al. Performance Measures for Early Psychosis
Treatment Services. Psychiatric Services, December 2005,
vol 56 no 12, p. 1570=1582.
International Consensus Measures
• Appropriateness
• Family & individual psychoeducation
• Gatekeeper education
• Acute care: average length, readmissions (EASA- %
involuntary)
• Medication measures
• Clinical: Assertive treatment, vocational &
psychological
Addington et al. Performance Measures for Early Psychosis
Treatment Services. Psychiatric Services, December 2005,
vol 56 no 12, p. 1570=1582.
International Consensus Measures
• Continuity
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Case management
Change of therapist
Post-hospital follow-up
Drop-out rates
ER visits
Addington et al. Performance Measures for Early Psychosis
Treatment Services. Psychiatric Services, December 2005,
vol 56 no 12, p. 1570=1582.
International Consensus Measures
• Effectiveness
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Global functioning
Positive, negative, depressive symptoms & symptom remission
Work & occupational functioning
Educational functioning
Community tenure
Improvement in quality of life
Improvement in family burden
Housing support
Financial status disability)
Assessment of substance abuse
Perception of recovery
Mortality rates
(EASA): arrests & legal involvement
Addington et al.
International Consensus Measures
• Competence
• Knowledge & application of evidence-based practice
• Formal and continuing education
• Efficiency
• Spending per capita on early psychosis services
• Administration costs
• Cost per patient
Addington et al.
International Consensus Measures
• Safety
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Side effects
Suicide rate & attempts
Homicides & attempts
Medication errors
Addington et al.
Considerations in Evaluation StartUp
• State or region-level coordination functions needed
• Data management, follow-up for accuracy & completeness, analysis
• Administrative data can be difficult to access
• Disconnect between academic and community environments
• HIPAA sharing arrangements & capacity- where does research end
and quality improvement begin?
• Clinician buy-in & concerns (workload, duplication & relevance),
accuracy
• Logistical ability to access & recruit participants directly
• Engagement vs. consent requirements
• Forums for sharing and use
• Early stages- “selling” or justifying investment; may create
disincentive for acknowledging lower performance areas or multiple
interpretations
Learning Healthcare System
• National conversation among early psychosis network
with NIMH leadership
• Based on Institute of Medicine recommendations
• Shared data and analysis to identify and target
improvements
• Individual characteristics/ demographics
• Services
• Outcomes
Conversations with Dr. Robert Heinssen;
Institute of Medicine Committee on the Learning Health Care System in
America. (2013). Best care at lower cost: the path to continuously learning
health care in America. Washington DC: National Academies Press.
Continuously Learning Health Care
System
• Access to best practice knowledge
• Data from care experience
• Patient and caregiver inclusion
• Incentive alignment & transparency
• Leadership and competency development around
continuous learning culture
Institute of Medicine Committee on the Learning Health Care System in
America. (2013). Best care at lower cost: the path to continuously learning
health care in America. Washington DC: National Academies Press.
National Dialogue: PEPPNET
• Prodrome and Early Psychosis Program Network
• Forum for national collaboration and coordination
• Workgroups
International Resource
• International Early Psychosis
Association
• Biennial conference (next one in Milan, Italy)
University of Maryland
RA1SE Connection Program
Ann Hackman, M.D.
Baltimore’s RA1SE Connection
Program
• Began in 2010
• Part of RA1SE research
• Fully developed program utilizing evidence
based practices
• Research ended in 2013. Program continued
through the University of Maryland’s Division
of Community Psychiatry.
• Part of a larger early intervention initiative
Admission criteria
• Age: 15-35
• Diagnosis: Schizophrenia, schizoaffective disorder,
schizophreniform disorder, brief psychotic disorder,
psychosis not otherwise specified, or delusional
disorder
• Psychopathology: At least one symptom of psychosis
at any time during the current episode (or the recent
episode if the individual is seen as he/she is
recovering)
• Duration of Illness: ≤ 2 years since the first onset of
psychotic symptoms
• Exclusion criteria including intellectual disability
Team staffing
• Team Leader: overall coordination of services
individual therapy, case management, crisis
intervention, information gathering, safety planning
• Recovery Coach: Social skills training, weekly
participant group, monthly family group, school
coordination
• Employment/Education specialist – job development,
addressing work and school related goals and
problems
• Psychiatrist: prescribing, shared decision making
• Administrative support and occasional nursing
available from clinic where program is embedded
Some components of service
• Regular prescribed meetings with participant and
team (e.g. weekly with psychiatrist in the 1st four
weeks)
• Family involvement whenever possible
• Safety planning
• Shared decision making
• Psychoeducation
• Recovery focus
• Flexibility
• 24-hour on call availability
• Participant recovery and social skills group
More components
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Family psychoeducation group
Individual sessions
Facilitating interface between participants
Preferred antipsychotic list (LAIs, aripiprazole,
risperidone, perphenazine, loxapine)
Discipline specific expert consultation
Shared meetings with the New York team
Access to unique materials (e.g. from the National
Empowerment Center)
Regular evaluations including with standardized
instruments
Transition beyond research
• Research ended in June 2013
• Now funded through SAMHSA/State of Maryland and
part of a larger plan to proliferate evidence based
early intervention programs in the state
• Program continues as part of a still developing
Maryland Early Intervention Program (MEIP) (a
collaborative program including University of
Maryland (UM) School of Medicine, UM Medical
System UM Baltimore County and the Maryland
Division of Health and Mental Hygiene). MEIP
Includes:
• Outreach and Education Services
• Clinical Services
• Consultation Services
• Training and Implementation Support Services
Data
• Initially most of the data collected was
directed by the research (most collected by
the team, some by research staff) with a
small portion required by the UMD Division
of Community Psychiatry
• Currently most standardized measures are in
the public domain (except for violence
assessments) and are collected in
conjunction with clinical sessions
Data
• Data are reviewed quarterly by
treatment team and by Maryland Early
Intervention Program
Data Collected
• All outreach educational efforts to community
• Referrals: when received, when contacted by team,
disposition
• Recording of all client/family contacts, attention to
frequency and location of visits, use of on- call
service
• Client hospitalizations
• Client arrests
• Individuals who leave treatment or are lost to followup
Data collected
• Height, weight, waist circumference
(quarterly)
• Labs CBC, Comprehensive metabilic panel,
glucose, lipids, liver function test, HgbA1C,
TSH, insulin level (semi-annual)
• Other labs as indicated (e.g. lithium level
during titration and every six months)
• Consumer satisfaction questionnaire
Scales and measures
• On Intake
• UCLA-PTSD Index (ages 12-18) or
PTSD Checklist (PCL-C) (over 18)
• Historical Clinical Risk Assessment-20 (HCR20)
• Structured Assessment of Violence Risk in
Youth (SAVRY)
• Suicide Risk Assessment (currently a clinic
instrument; may be repeated as needed)
Scales and measures
• On intake then annually
• Cornblatt Social/Role Functioning Scale
• Abnormal Involuntary Movement Scale
(AIMS)
• On intake then semi-annually
• Individualized safety plan
• Maryland Assessment of Recovery in People
with Serious Mental Illness (MARS)
Scales and measures
• On intake and then quarterly
• Four Item Positive Symptom Rating Scale
(quarterly)
• Four Item Negative Symptom Rating Scale
(quarterly)
• Four Item Depressive Symptom Scale
(quarterly)
Data collection discontinued
following research
• Quarterly Symptom Side Effect Checklist
• Quarterly Psychiatric Medication side effect
checklist
• Simpson Angus EPS rating scale
• Wellness plan
• Psychiatric visit log
• Current experience with and preferences with
medications form
• Serious Adverse Event form
• Check off of Connection program handout for meds
Lessons learned
• Participants in the program were
generally cooperative with data
collection
• Importance of collecting information,
using standardized instruments which
can be incorporated into regular
clinical care
• With relative ease
• With a minimum of redundancy
Thoughts for the future
• More computer based data
standardized assessment instruments
(including for self report)
Some web sites
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Four Item positive, negative and depression checklists (quarterly)
http://www.sccp.sc.edu/sites/default/files/45107%20padforproofing.pdf
• Cornblatt
http://schizophreniabulletin.oxfordjournals.org/content/33/3/688.full.pdf+html
• UCLA-PTSD Index http://www.ptsd.va.gov
• PCL-C
http://www.mirecc.va.gov/docs/visn6/3_PTSD_CheckList_and_Scoring.pdf
• HCR-20 http://hcr-20.com/
• SAVRY http://www4.parinc.com/Products/Product.aspx?ProductID=SAVRY
(available for purchase)
• AIMS http://www.atlantapsychiatry.com/forms/AIMS.pdf
• MARS http://www.nyc.gov/html/doh/downloads/pdf/mh/measuring-recoverytoolkit.pdf
Maryland Early Intervention Program
http://marylandeip.com
Some references
•
Borum, R., Bartel, P., & Forth, A. (2008). Structured assessment of violence risk in youth
(SAVRY). In B. Cutler (Ed.), Encyclopedia of psychology and law. (pp. 771-773).
•
Douglas, K. S., Hart, S. D., Webster, C. D., & Belfrage, H. (2013). HCR-20V3: Assessing risk
of violence – User guide. Burnaby, Canada: Mental Health, Law, and Policy Institute, Simon
Fraser University.
•
Steinberg AM, Brymer MJ, Kim S, Ghosh C, Ostrowski SA, Gulley K, , Briggs, EC, Pynoos,
RS (2013). Psychometric properties of the UCLA PTSD Reaction Index: Part 1, Journal of
Traumatic Stress, 26, 1-9.
•
Steinberg, A. M., Brymer, M., Decker, K., & Pynoos, R. S. (2004). The UCLA PTSD Reaction
Index. Current Psychiatry Reports, 6, 96-100.
•
Weathers, F.W., Litz, B.T., Keane, T.M., Palmieri, P.A., Marx, B.P., & Schnurr, P.P. (2013).The
PTSD Checklist for DSM-5 (PCL-5). Scale available from the National Center for PTSD at
www.ptsd.va.gov.
•
Also New York Connections Program
http://nyspi.org/nyspi/patients-and-families/ontrack-ny-connections-program
http://www.nyc.gov/html/doh/downloads/pdf/mh/measuring-recovery-toolkit.pdf