Liberman JHSPH Symposium presentation

RECOVERY
RECOVERY from
from SCHIZOPHRENIA
SCHIZOPHRENIA
How
How is
is itit Defined
Defined and
and How
How is
is itit Achieved?
Achieved?
Robert Paul Liberman, M.D.
Distinguished Professor of Psychiatry,
UCLA School of Medicine
Director, UCLA Psych REHAB Program
WHAT IS RECOVERY ?
Like all medical and mental disorders, recovery is a
process from disability to a state of relatively normal
functioning in society.
•
•
There are two prevailing concepts of recovery:
–
A personal and subjective experience of recovering
from disability
–
Reaching a sustained stage of recovery
Distinctions between recovering and recovery
RECOVERY from SCHIZOPHRENIA
Functional Recovery
•
•
•
•
•
•
Symptoms not intruding on everyday life
Independent living – managing one’s own meds and money
Work or school at least half time in normative settings
Cordial relations with family
Social outings with one or more friends at least once/ week
Recreational and social activities in normative settings
Personal Experience of Recovery
•
•
•
•
•
•
•
•
Living with dignity
Meaningful and satisfying life
Hope for a better future
Self-responsibility
Empowerment for achieving one’s goals and autonomy
Self-respect and self-efficacy based on strengths
Choices and self-direction in treatment and social services
Collaboration in partnership with mental health providers
DEFINITIONS OF RECOVERY
“Persons have recovered when symptoms of their
illness do not intrude on their functioning in everyday life,
permitting them to work, attend school, participate in social
and recreational activities and live as independently as
possible in normal, community environments without being
segregated in enclaves of the mentally ill.”
(Liberman & Kopelowicz, 2005)
CLINICAL CRITERIA for RECOVERY
The criteria below are sustained for 2 years:
•
Remission from positive and negative psychotic symptoms
as well as associated or co-morbid disorders to the extent
that the symptoms do not intrude on everyday functioning
(e.g., BPRS symptom scales at “moderate” or less)
•
Living independently – managing one’s self-care, money and
medication autonomously
•
•
Working or attending school at least half time
•
•
Recreational activities in normative settings
Social contacts with peers at least once/week in normative
community settings
Cordial relations with family
ATTRIBUTES of the RECOVERING PROCESS
•
•
•
•
•
•
•
•
Hope
Empowerment
Self-direction, self-help, peer support
Self-responsibility, consumer-run enterprises
Resilience in response to adversity
Success in meeting one’s personal goals
Getting on with one’s life
Achieving self-value for a satisfying life with dignity
DEFINITIONS OF RECOVERY
“Mental health recovery is a journey of healing and
transformation enabling a person with a mental disability
to live a meaningful life in the community of his or her
choice while striving to achieve his or her full potential.”
(Consensus Conference of Substance Abuse &
Mental Health Services Administration, 2005)
DEFINITIONS OF RECOVERY
“Recovery is a way of living a satisfying, hopeful and
contributing life even with limitations caused by the illness.
Recovery involves the development of new goals,
aspirations, meaning and purpose in one’s life as one
grows beyond the catastrophic effects of mental illness.”
(Anthony, 1993)
DEFINING RECOVERY SUBJECTIVELY
is FREIGHTED with PERPLEXITY
“In the case of a word like recovery, not only is there no
agreed definition, but the attempt to make one is resisted from
all sides. It is almost universally felt that when we say that a
person is in recovery we are celebrating him. Consequently
the defenders of every kind of psychological ideology claim
that they know what recovery is, and fear that they might have
to stop using the word if it were tied down to any one
meaning. Thus, the term recovery consists largely of
euphemism, question-begging and sheer cloudy vagueness.”
George Orwell
“Politics and the English Language”
HOW
HOW CAN
CAN FUNCTIONAL
FUNCTIONAL RECOVERY
RECOVERY
BE
BE MEASURED?
MEASURED?
•
•
•
•
•
•
•
Client’s Assessment of Strengths, Interests and Goals
UCLA Expanded Brief Psychiatric Rating Scale
Independent Living Skills Survey
WHO-DAS and other social adjustment scales
Social and Occupational Functioning Assessment Scale
Criterion-based ratings from interviews with patients,
family and significant others
Social Integration Scale
HOW
HOW CAN
CAN SUBJECTIVELY
SUBJECTIVELY EXPERIENCED
EXPERIENCED
DIMENSIONS
DIMENSIONS OF
OF RECOVERY
RECOVERY BE
BE MEASURED?
MEASURED?
•
•
•
•
•
•
•
•
Consumer Empowerment Scale
Self-Efficacy Scale
Beck Hopelessness Scale; Hope Scale
Illness Locus of Control Scale
Quality of Life Scale
Recovery Assessment Scale
Self-stigma Scale
Qualitative interviews using criteria for credibility,
transferability, dependability and confirmability
HOW ARE PERSON-CENTERED, CLINICAL
SERVICES ORGANIZED and DELIVERED
to PROMOTE RECOVERY?
ENGAGEMENT, GOAL
SETTING and MOBILIZING
NATURAL SUPPORTS.......... Motivational enhancement
EXPECTING DIGNITY
& RESPECT…………............. Warm greetings at encounters
COLLABORATIVE
RELATIONSHIPS……………. Patient & family as experts & partners
HOPE for a
BETTER FUTURE…………… Induction of realistic optimism
INFORMED, SHARED
DECISION-MAKING…………. Choosing medications
HOW ARE PERSON-CENTERED, CLINICAL
SERVICES ORGANIZED and DELIVERED
to PROMOTE RECOVERY? (cont’d)
PERSONAL
RESPONSIBILITY…............... What do you need to attend treatment
regularly?
SELF-MANAGEMENT of
ILLNESS …………..…………. Developing a relapse prevention plan
EMPOWERMENT…….……… Social skills training
PARTICIPATION in
COMMUNITY LIFE ….………. Registering to vote
POSITIVE IDENTITY with
SELF-ESTEEM ……………… Giving contingent positive reinforcement
HOW MANY RECOVER from SCHIZOPHRENIA?
% Recovered
100
90
80
70
60
50
40
30
20
10
0
45
USAChicago
CHRONIC
46
48
53
53
57
USAWHOSwitzerland- Germany- SwitzerlandIowa
Bonn
International
Berne
Zurich
CHRONIC MOSTLY CHRONIC
MIXED
CHRONIC
1ST EPISODE
HOW MANY RECOVER from SCHIZOPHRENIA?
% Recovered
100
90
80
70
60
50
40
30
20
10
0
89
64
68
91
93
74
JapanUSAUSANova Scotia- AustraliaUSAUrban
Halifax
Melbourne Los Angeles
Vermont
New York
MOSTLY CHRONIC 1ST EPISODE
1ST EPISODE 1ST EPISODE
1ST EPISODE
DIMENSIONS of RECOVERY in EARLY PSYCHOSIS
80
70
70
60
50
% of clients
% of clients
60
50
40
30
Positive symptoms
Negative symptoms
Disorganized
20
10
0
40
30
20
Daily Living
Life Line
10
0
Baseline
6 months
Symptoms
12 months
Baseline
6 months
12 months
Psychosocial Functioning
Whitehorn et al., 2002
UCLA AFTERCARE PROGRAM
Recent-Onset Schizophrenia
One Year Outcomes
Positive Symptom Remission
Negative Symptom Remission
83%
72%
Employed or at School
0
20
40
93%
60
Percent of Patients
80
100
Nuechterlein et al., 2006
METHODOLOGICAL
METHODOLOGICAL DILEMMAS
DILEMMAS
IN
IN THE
THE DEFINITION
DEFINITION OF
OF RECOVERY
RECOVERY
•
•
•
Categorical or dimensional definitions; what are their advantages and
disadvantages?
Social and professional validation of definitions of “normality” – what
dimensions should be included? By whom and how? Cultural and
gender role variations?
Schizophrenia is a heterogeneous, dynamic, stress-related,
neurobiological disorder with countless brain-behavior-environment
interactions that influence phases of relapse, stabilization, stable,
recovery and refractory.
- On what basis can a suitable study population be selected?
- Recruitment into research may yield patients with more refractory
symptoms and greater disability.
- Pitfall of using unrealistically high standards for defining recovery.
METHODOLOGICAL
METHODOLOGICAL DILEMMAS
DILEMMAS
IN
’d)
IN THE
THE DEFINITION
DEFINITION OF
OF RECOVERY
RECOVERY (cont
(cont’d)
•
•
•
Remission vs. functional recovery or both?
Outcome is a research artifact; longitudinal follow through studies
are essential with frequent assessments to capture periodic
variations in clinical, social and experiential status.
Does recovery require that the person regain his/ her pre-morbid
level of functioning? Since individuals have varying levels of premorbid functioning, should recovery be evaluated by having each
person serve as his/ her own control?
FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING
Social Role
Complexities
Environment
Stigma
Supports – Social,
Financial, Housing,
Medical, Psychiatric
Opportunities,
Encouragement
& Rewards for
Role Functioning
Social
Stressors
Personal Goals
Desired Roles
Psychiatric Symptoms,
Motivation to Perform Role
SOCIAL and
VOCATIONAL
FUNCTIONING
In Vivo
Practice
Expertise in
Performing
Role
Disease
Management
Realistic
Goals
Individual
Sequence &
Timing
of Behavioral
Requirements
Stressors
Expectancies and Social Norms
Contextual Factors
and Difficulties
Motivational Enhancement
Medication Effects
Cognitive
Impairments
Number
& Mix
of Tasks
Quality of Instruction
Rehabilitation
Services
Family & Social
Skills Training
Role Skills
Quality of Curriculum
Case Management
Supported Employment
Supportive
Services
Supported Education
Supported Housing
FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING
SOCIAL and
VOCATIONAL
FUNCTIONING
Personal Goals
Desired Roles
Psychiatric Symptoms,
Motivation to Perform Role
Motivational Enhancement
In Vivo
Practice
Medication Effects
Cognitive
Impairments
Expertise in
Performing
Role
Disease
Management
Realistic
Goals
Individual
Quality of Instruction
Rehabilitation
Services
Family & Social
Skills Training
Role Skills
Quality of Curriculum
Case Management
Supported Employment
Supportive
Services
Supported Education
Supported Housing
FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING
Environment
Stigma
Opportunities,
Encouragement
& Rewards for
Role Functioning
Supports – Social,
Financial, Housing,
Medical, Psychiatric
Social
Stressors
SOCIAL and
VOCATIONAL
FUNCTIONING
FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING
Social Role
Complexities
Number and Mix of Tasks
Sequence and Timing
of Behavioral Requirements
Stressors
Expectancies and Social Norms
Contextual Factors and Difficulties
SOCIAL and
VOCATIONAL
FUNCTIONING
WHAT ARE THE PREDICTORS OF RECOVERY
FOR HYPOTHESIS TESTING?
Theory-driven personal strengths, positive prognostic
factors, evidence-based practices and practice-based
evidence may be predictors of recovery as drawn from
the vulnerability-stress-protective factors that
influence course and outcome of schizophrenia.
VULNERABILITY-STRESS-PROTECTIVE FACTORS in RECOVERY
Socioenvironmental
Stressors
Psychobiological
Vulnerability
PROTECTIVE FACTORS
Psychotropic Medications
Cognitive Remediation
Disease Management
Continuity of Services
Skill Building
Family Support & Problem Solving
Supported & Transitional Employment
Supported & Transitional Housing
Assertive Community Treatment
RECOVERY
RECOVERY
STABLE
STABLE
RECURRENT
RECURRENT RELAPSES
RELAPSES
REFRACTORY
REFRACTORY
CLINICAL
CLINICAL PROGRESS
PROGRESS &
& OUTCOMES
OUTCOMES
Symptoms
& Relapse
Cognitive
Impairments
Social
Functioning
Quality
of Life
WHAT are the CANDIDATES for PREDICTORS of RECOVERY ?
Most Predictive Factors are Malleable through Treatment
1.
2.
3.
4.
5.
6.
Supportive family or caregivers
Absence of substance abuse
Shorter duration of untreated psychosis
Good initial response to neuroleptics
Adherence to treatment
Supportive therapy with a collaborative
therapeutic alliance
7. Good neurocognitive functioning
8. Absence of the deficit syndrome
9. Good premorbid history
10. Access to comprehensive, coordinated
and continuous treatment
NORMAL NEUROCOGNITION is ASSOCIATED
WITH RECOVERY
Recovered
Non-Recovered
Normal Control
35
30
50
4
45
3.5
40
25
35
3
30
2.5
25
2
15
20
1.5
10
15
20
10
5
0
Visuo-Perceptual
1
5
0.5
0
0
Verbal Working Memory
Executive Functioning
Kopelowicz et al., 2005
NORMAL NEUROCOGNITION is ASSOCIATED
WITH RECOVERY
Recovered
Non-Recovered
Normal Control
60
25
50
20
40
15
30
10
20
5
10
0
0
Verbal Fluency
Verbal Learning
Kopelowicz et al., 2005
ENDURING TRAIT-LIKE
NEUROCOGNITIVE DEFICIT
52
Recovered
Non-Recovered
Normal Control
51
50
49
48
47
46
45
Early Visual Processing
Kopelowicz et al., 2005
PATHWAY
PATHWAY to
to RECOVERY
RECOVERY
1.
2.
3.
4.
Care is based on continuous, effective, healing partnerships and relationships based on dignity and
respect. The mental healthcare system should provide flexible access and be responsive at all times.
Individualized care is based on the unique needs and values including cultural sensitivity of the person
served and family.
The person and family served are provided meaningful choices, are fully informed of treatment options and
understand that they are the source of control in their treatment.
Decision-making is guided by the values, preferences, needs and desires of the person as well as
current best evidence.
Access
5.
6.
7.
8.
Engagement
Assessment
Collaborative
Decisionmaking on
Goals &
Services
Personalized
Planning for
Treatment &
Supports
Implementation
and Evaluation
of Services &
Supports
Strengthening
Self-reliance &
Community
Integration
The mental health system plans for individual, family and community needs.
There is a continuous effort to provide effective care and link treatment with ongoing assessment.
There should be cooperation across systems and among mental health providers to ensure the
appropriate and timely exchange of information and coordination of effective care.
Correcting current disparities in the mental health system will assure administrative mandates and
problem-solving, timely access, availability of evidence-based practices and quality of care.
WHAT is EMPOWERMENT ?
SOCIAL & INDEPENDENT LIVING SKILLS
for SUCCESSFUL LIVING
SELF-EFFICACY & SELF-ACCEPTANCE
CONTENTMENT & HOPEFULNESS
Functional behavior, self-confidence and emotional state
are reciprocally reinforcing but the most effective portal
of intervention is through behavior change.
PERSONAL EFFECTIVENESS for SUCCESSFUL LIVING
THE PATHWAY of PERSONAL EFFECTIVENESS
to SUCCESSFUL LIVING
Identify your personal GOAL….. How do you want your life to be
different and better than now?
Select a situation involving........
another person that will be a
SMALL STEP toward reaching
your personal goal.
Choose WHAT you want to attain,
WITH WHOM you need to
communicate, WHERE and WHEN
you will be trying to take this step.
Watch a DEMONSTRATION....... Learn by WATCHING the skills
of the situation with another
being used in the role-play.
person taking your role.
PERSONAL EFFECTIVENESS for SUCCESSFUL LIVING
THE PATHWAY of PERSONAL EFFECTIVENESS
to SUCCESSFUL LIVING (cont’d)
Practice the skills for………........ Learn by DOING the skills in
Achieving your needs in a role- behavioral rehearsal with coaching
play, using good VERBAL &
and positive feedback.
NONVERBAL COMMUNICATION.
Give and get POSITIVE……........ Positive REINFORCEMENT
FEEDBACK for what you have strengthens your skills and knowdone effectively.
how.
Complete a HOMEWORK…........ Using your PERSONAL
assignment that enables you to EFFECTIVENESS to make your life
use your skills in everyday life. more successful and satisfying is
where the rubber hits the road.
FROM DISABILITY TO RECOVERY
PERSONAL GOAL ATTAINMENT THROUGH
GROUP SOCIAL SKILLS TRAINING
Stepwise
Goal
Attainment
Introduces
self to store
manager
Asks openopenended
questions in
art class
Volunteers
at a preschool
Introduces
self to new
group
member
Gives
positive
feedback to
others
Participates
in Basic
Conversation
Skills Module
Participates
in Role-Play
Able to remain 50% of Time
in Group for
Entire Session
1/00
Participates
in Friendship
& Intimacy
Module
Calls for info
on tennis
lessons
3/00 6/00 9/00 7/01 10/01 10/02
Steadily
Dating for
8 Months
Posts
Profile on
Computer
Dating
Service
Has dinner with
tennis partner
Becomes
Engaged
Has
practice
date
Has
conversation
with partner
at concert
Solves who
pays for date
Speed dating conversations
4/03 6/03 10/03 7/04 12/04 4/05 11/05 1/06
DATE
EMPOWERMENT THROUGH TRAINING in
PERSONAL EFFECTIVENESS
•
•
•
•
•
•
•
•
Making choices and decisions
Becoming involved in treatment
Active and informed participation
in services
Knowing what it takes
Gaining self-esteem
Achieving mastery and confidence
Success with small steps
Participating in society
•
Taking control of one’s life
= Setting goals
= Motivational enhancement
= Role playing with coaching
= Social modeling by peers
= Positive reinforcement
= Repetition
= Shaping
= Applying skills in the
real world
= Expanding skills and
problem-solving
EMPOWERMENT is PERSONAL EFFECTIVENESS
for SUCCESSFUL and SATISFYING LIVING
•
Disease self-management: informed use of medication,
symptom management, relapse prevention, coping with
stressors, substance abuse management, active and
collaborative partnership with mental health team
•
•
•
Independence in money and time management
•
Developing satisfying relationships with family and friends
Achieving personal identity through meaningful work,
school or volunteering in normative community locales
Personal responsibility through advocacy, education and
stigma busting
WARNING
WARNING SIGNS
SIGNS RATING
RATING SHEET
SHEET
““People
People on
”
onthe
thestreet
street seem
seemto
tobe
belooking
lookingat
at me
mewith
withdislike.
dislike.”
Severe
Moderate
Mild
Absent
SKILLS TRAINING MUST START with ASSESSMENT
CASIG
Personal
goals &
roles
Individually
elicited in all
functional
areas of
living
Quality
of life
Unacceptable
community
behaviors
10 behaviors such
as suicidality, drug
and alcohol abuse,
verbal or physical
assault, stealing,
and sexual abuse
Satisfaction with 11 areas
such as finances, friends,
leisure/ recreation, family,
safety, residence and
overall
Medication
practices
Functional
living skills
Symptoms
10 areas including
food preparation,
work, leisure, friends,
personal self-care,
health and mental
health attendance and
money management
Adherence, side effects,
attitudes and beliefs,
knowledge of benefits,
self-administration
Cognitive
functioning
Quality of
treatment
Memory,
decisions,
problem-solving,
initiative and
concentration
6 symptoms including
delusions, hallucinations,
thought disorder, mania,
anxiety and depression
Courtesy,
accessibility,
information, warmth
and empathy
Spiritual
&
religious
Patient
rights
Beliefs,
support, hope
and selfacceptance
Informed consent,
confidentiality,
involvement in
setting goals and
deciding on
treatment
What are
my goals?
What
What functioning
functioning will
will
be
be required
required of
of me
me to
to
achieve
achieve my
my goals?
goals?
What
What areas
areas of
of functioning
functioning
do
do II already
already possess?
possess?
What
What skills
skills and
and supports
supports
do
do II already
already have
have to
to meet
meet
the
the requirements
requirements of
of this
this
goal?
goal?
What
What skills
skills and
and
supports
supports do
do II need
need to
to
learn
learn and
and acquire?
acquire?
How
How will
will II be
be able
able to
to
accomplish
accomplish this?
this?
Questions Yield Answers that Guide the Development of the Treatment Plan
Information
from CASIG
Who
Who will
will assist
assist me
me in
in
obtaining
obtaining and
and
coordinating
coordinating services,
services,
ensure
ensure that
that they
they are
are
provided
provided and
and have
have the
the
desired
desired effects?
effects?
Social
Social supports
supports and
and
services
services available
available for
for
remediating
remediating deficits?
deficits?
Is
Is skills
skills training
training available
available
for
for remediating
remediating deficits
deficits or
or
do
do we
we have
have to
to advocate
advocate
for
for it?
it?
RECOVERY
RECOVERY IS
IS THE
THE VISION
VISION
REHABILITATION
REHABILITATION IS
IS THE
THE MISSION
MISSION
AS WITH RECOVERY FROM ANY DISEASE, TREATMENT AND REHABILITATION
EVIDENCE-BASED SERVICES YIELD OPTIMAL OUTCOMES WHEN THEY ARE
PRACTICE-BASED BY BEING INDIVIDUALIZED AND PROVIDED:
•
•
•
•
•
•
•
•
•
•
Competently
Collaboratively with patients and families
Consistently over time
In coordination with other treatments
In the comprehensive array of treatments
Connected to the phase of the person’s illness, behavioral
and functional strengths and personally relevant goals
Continuously, flexibly and indefinitely over time
Cooperatively with community resources and agencies
Compassionately and with respect for the consumer and
With commitment by clinicians
FROM DISABILITY to RECOVERY
PHASE of
DISORDER
DISABILITY
Acute
Stabilizing
Stable
Recovery
Refractory
TREATMENT & REHABILITATION
Comprehensive
Continuous
Coordinated
Consistent
Competent
Collaborative
Consumer-Oriented
Coherent
Commitment
Compassionate
RECOVERING
ATTRIBUTES
Hope
Dignity
Empowerment Self-value
Resilience
Self-help
Self-Responsibility
RECOVERY
PREDICTORS & CORRELATES
of RECOVERY
Supportive family
Mutually respectful therapeutic alliance
Good premorbid social competence
No substance abuse
Good initial response to antipsychotics
Adherence to treatment
No primary negative symptoms
Early identification & intervention for psychosis
Normal neurocognition
“It is much more important to know what
sort of patient has a disease than what
sort of disease a patient has.”
Sir William Osler
Professor of Medicine
Johns Hopkins School of Medicine
Oxford University School of Medicine
1920
PROMOTING RECOVERY with PERSONALLY
RELEVANT GOALS SUPPORTED by EVIDENCEBASED SERVICES and REALISTIC OPTIMISM for
EACH PATIENT REACHING OPTIMUM NORMALITY
in THEIR LIVES
“Philosophy is right in saying that life must be
understood backward, but one must not forget
that life must be lived forward.”
- Soren Kierkegaard
RECOVERY FROM DISABIITY
Manual of Psychiatric Rehabilitation
by
Robert Paul Liberman, M.D.
Soon to be published textbook
Flyer available on back table
Contents:
Overcoming Disability, Reaching Recovery
Principles of Psychiatric Rehabilitation
Disease Management
Functional Assessment
Training Social and Independent Living Skills
Involving Families in Services for Recovery
Vocational Rehabilitation: Working for Recovery
Vehicles for Delivering Services
Special Services for Special People
New Developments in Psychiatric Rehabilitation