RECOVERY from SCHIZOPHRENIA How is it it Defined and How is it it Achieved?

Transcription

1 RECOVERY from SCHIZOPHRENIA How is it it Defined and How is it it Achieved? Robert Paul Liberman, M.D. Distinguished Professor of Psychiatry, UCLA School of Medicine Director, UCLA Psych REHAB Program

2 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

3 RECOVERY from SCHIZOPHRENIA Functional Recovery Symptoms not intruding on everyday life Independent living managing one s 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 s goals and autonomy Self-respect and self-efficacy efficacy based on strengths Choices and self-direction in treatment and social services Collaboration in partnership with mental health providers

4 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)

5 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 s self-care, money and medication autonomously Working or attending school at least half time Social contacts with peers at least once/week in normative community settings Recreational activities in normative settings Cordial relations with family

6 ATTRIBUTES of the RECOVERING PROCESS Hope Empowerment Self-direction, self-help, peer support Self-responsibility, consumer-run run enterprises Resilience in response to adversity Success in meeting one s s personal goals Getting on with one s s life Achieving self-value for a satisfying life with dignity

7 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)

8 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)

9 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

10 HOW CAN FUNCTIONAL RECOVERY BE 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

11 HOW CAN SUBJECTIVELY EXPERIENCED DIMENSIONS OF RECOVERY BE 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

12 HOW ARE PERSON-CENTERED, CLINICAL SERVICES ORGANIZED and DELIVERED to PROMOTE RECOVERY? ENGAGEMENT, GOAL SETTING and MOBILIZING NATURAL SUPPORTS... EXPECTING DIGNITY & RESPECT... COLLABORATIVE RELATIONSHIPS. HOPE for a BETTER FUTURE INFORMED, SHARED DECISION-MAKING. Motivational enhancement Warm greetings at encounters Patient & family as experts & partners Induction of realistic optimism Choosing medications

13 HOW ARE PERSON-CENTERED, CLINICAL SERVICES ORGANIZED and DELIVERED to PROMOTE RECOVERY? (cont d) PERSONAL RESPONSIBILITY... SELF-MANAGEMENT of ILLNESS... What do you need to attend treatment regularly? Developing a relapse prevention plan EMPOWERMENT. PARTICIPATION in COMMUNITY LIFE.. POSITIVE IDENTITY with SELF-ESTEEM Social skills training Registering to vote Giving contingent positive reinforcement

14 HOW MANY RECOVER from SCHIZOPHRENIA? % Recovered USA- Chicago CHRONIC USA- Iowa CHRONIC WHO- International MOSTLY 1 ST EPISODE Switzerland- Berne CHRONIC Germany- Bonn MIXED 57 Switzerland- Zurich CHRONIC

15 HOW MANY RECOVER from SCHIZOPHRENIA? % Recovered Japan- Urban MOSTLY 1 ST EPISODE 68 USA- Vermont CHRONIC USA- Nova Scotia- New York Halifax 1 ST EPISODE Australia- Melbourne 1 ST EPISODE USA- Los Angeles 1 ST EPISODE

16 DIMENSIONS of RECOVERY in EARLY PSYCHOSIS % of clients Positive symptoms Negative symptoms Disorganized % of clients Daily Living Life Line 0 Baseline 6 months 12 months 0 Baseline 6 months 12 months Symptoms Psychosocial Functioning Whitehorn et al., 2002

17 UCLA AFTERCARE PROGRAM Recent-Onset Schizophrenia One Year Outcomes Positive Symptom Remission 83% Negative Symptom Remission 72% Employed or at School 93% Percent of Patients Nuechterlein et al., 2006

18 METHODOLOGICAL DILEMMAS IN THE DEFINITION OF 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.

19 METHODOLOGICAL DILEMMAS IN THE DEFINITION OF RECOVERY (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?

20 FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING Environment Social Role Complexities Opportunities, Encouragement & Rewards for Role Functioning Personal Goals Desired Roles Psychiatric Symptoms, Motivation to Perform Role Medication Effects Stigma Supports Social, Financial, Housing, Medical, Psychiatric Social Stressors Number & Mix of Tasks Sequence & Timing of Behavioral Requirements Motivational Enhancement In Vivo Practice Stressors Expectancies and Social Norms Contextual Factors and Difficulties SOCIAL and VOCATIONAL FUNCTIONING Cognitive Impairments Individual Realistic Goals Disease Management Expertise in Performing Role Role Skills Case Management Supported Education Quality of Instruction Family & Social Skills Training Quality of Curriculum Supported Employment Supported Housing Supportive Services Rehabilitation Services

21 FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING Personal Goals Desired Roles Psychiatric Symptoms, Motivation to Perform Role Medication Effects Motivational Enhancement In Vivo Practice SOCIAL and VOCATIONAL FUNCTIONING Cognitive Impairments Individual Realistic Goals Disease Management Expertise in Performing Role Role Skills Case Management Supported Education Quality of Instruction Family & Social Skills Training Quality of Curriculum Supported Employment Supported Housing Supportive Services Rehabilitation Services

22 FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING Environment Opportunities, Encouragement & Rewards for Role Functioning Stigma Supports Social, Financial, Housing, Medical, Psychiatric Social Stressors SOCIAL and VOCATIONAL FUNCTIONING

23 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

24 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.

25 VULNERABILITY-STRESS-PROTECTIVE FACTORS in RECOVERY Psychobiological Vulnerability Socioenvironmental Stressors 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 STABLE RECURRENT RELAPSES REFRACTORY CLINICAL PROGRESS & OUTCOMES Symptoms & Relapse Cognitive Impairments Social Functioning Quality of Life

26 WHAT are the CANDIDATES for PREDICTORS of RECOVERY? Most Predictive Factors are Malleable through Treatment 1. Supportive family or caregivers 2. Absence of substance abuse 3. Shorter duration of untreated psychosis 4. Good initial response to neuroleptics 5. Adherence to treatment 6. 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

27 NORMAL NEUROCOGNITION is ASSOCIATED WITH RECOVERY Recovered Non-Recovered Normal Control Visuo-Perceptual Verbal Working Memory Executive Functioning Kopelowicz et al., 2005

28 NORMAL NEUROCOGNITION is ASSOCIATED WITH RECOVERY Recovered Non-Recovered Normal Control Verbal Fluency Verbal Learning Kopelowicz et al., 2005

29 ENDURING TRAIT-LIKE NEUROCOGNITIVE DEFICIT Recovered Non-Recovered Normal Control Early Visual Processing Kopelowicz et al., 2005

30 PATHWAY to RECOVERY 1. Care is based on continuous, effective, healing partnerships and relationships based on dignity and respect. The mental healthcare system should provide flexible access a and be responsive at all times. 2. Individualized care is based on the unique needs and values including cultural sensitivity of the person served and family. 3. The person and family served are provided meaningful choices, are fully informed of treatment t options and understand that they are the source of control in their treatment. t. 4. Decision-making is guided by the values, preferences, needs and desires of the person as well as current best evidence. Access Engagement Assessment Collaborative Decision- making on Goals & Services Personalized Planning for Treatment & Supports Implementation and Evaluation of Services & Supports Strengthening Self-reliance & Community Integration 5. The mental health system plans for individual, family and community needs. 6. There is a continuous effort to provide effective care and link treatment with ongoing assessment. sment. 7. 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. 8. 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.

31 WHAT is EMPOWERMENT? SOCIAL & INDEPENDENT LIVING SKILLS for SUCCESSFUL LIVING SELF-EFFICACY 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.

32 PERSONAL EFFECTIVENESS for SUCCESSFUL LIVING THE PATHWAY of PERSONAL EFFECTIVENESS to SUCCESSFUL LIVING Identify your personal GOAL.. Select a situation involving... another person that will be a SMALL STEP toward reaching your personal goal. Watch a DEMONSTRATION... of the situation with another person taking your role. How do you want your life to be different and better than now? Choose WHAT you want to attain, WITH WHOM you need to communicate, WHERE and WHEN you will be trying to take this step. Learn by WATCHING the skills being used in the role-play.

33 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 know- done 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.

34 Stepwise Goal Attainment Gives Introduces positive self to new feedback to group others member FROM DISABILITY TO RECOVERY PERSONAL GOAL ATTAINMENT THROUGH GROUP SOCIAL SKILLS TRAINING Participates in Role-Play Able to remain 50% of Time in Group for Entire Session Introduces Asks open- self to store ended manager questions in art class Volunteers at a preschool Participates in Basic Conversation Skills Module Participates in Friendship & Intimacy Module Has dinner with tennis partner Posts Profile on Computer Dating Service Has practice date Calls for info Speed dating - on tennis conversations lessons Becomes Steadily Engaged Dating for 8 Months Has conversation with partner at concert Solves who pays for date 1/00 3/00 6/00 9/00 7/01 10/01 10/02 4/03 6/ /03 7/04 12/04 4/05 11/05 1/06 DATE

35 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 esteem Achieving mastery and confidence Success with small steps Participating in society Taking control of one s 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

36 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

37 WARNING SIGNS RATING SHEET People on on the street seem to to be be looking at at me with dislike. Severe Moderate Mild Absent

38 KILLS TRAINING MUST START with ASSESSMENT

39 CASIG Personal goals & roles Quality of life Unacceptable community behaviors Medication practices Functional living skills Symptoms Cognitive functioning Quality of treatment Spiritual & religious Patient rights Individually elicited in all functional areas of living Satisfaction with 11 areas such as finances, friends, leisure/ recreation, family, safety, residence and overall 10 behaviors such as suicidality, drug and alcohol abuse, verbal or physical assault, stealing, and sexual abuse Adherence, side effects, attitudes and beliefs, knowledge of benefits, self-administration 10 areas including food preparation, work, leisure, friends, personal self-care, health and mental health attendance and money management 6 symptoms including delusions, hallucinations, thought disorder, mania, anxiety and depression Memory, decisions, problem-solving, initiative and concentration Courtesy, accessibility, information, warmth and empathy Beliefs, support, hope and selfacceptance Informed consent, confidentiality, involvement in setting goals and deciding on treatment

40

41 What are my goals? What functioning will be required of me to achieve my goals? What areas of functioning do I already possess? What skills and supports do I already have to meet the requirements of this goal? What skills and supports do I need to learn and acquire? How will I be able to accomplish this? Questions Yield Answers that Guide the Development of the Treatment Plan Information from CASIG Who will assist me in obtaining and coordinating services, ensure that they are provided and have the desired effects? Social supports and services available for remediating deficits? Is skills training available for remediating deficits or do we have to advocate for it?

42

43 RECOVERY IS THE VISION REHABILITATION IS THE 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 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

44 FROM DISABILITY to RECOVERY DISABILITY PHASE of DISORDER Acute Stabilizing Stable Recovery Refractory RECOVERING ATTRIBUTES Hope Dignity Empowerment Self-value Resilience Self-help Self-Responsibility RECOVERY TREATMENT & REHABILITATION Comprehensive Collaborative Continuous Consumer-Oriented Coordinated Coherent Consistent Commitment Competent Compassionate 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

45 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

46 PROMOTING RECOVERY with PERSONALLY RELEVANT GOALS SUPPORTED by EVIDENCE- BASED 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

47 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