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Optimizing Outcomes in Bipolar Disorder: Measuring and Maximising Quality of Life
1. Optimizing Outcomes in Bipolar Disorder:
Measuring and Maximising Quality of Life
Erin Michalak, Associate Professor,
Department of Psychiatry, University of British Columbia
2. With special thanks to:
Dr. Greg Murray Victoria Maxwell Dr. Sagar Parikh
University of Swinburne, Crazy for Life, Co. University Health Network
Melbourne, Australia Sunshine Coast, BC University of Toronto
In partnership with: With support from:
A
SystemAction
Initiative
Initiative
3. Disclosures (lifetime)
Speaker/advisory board/consulting honoraria:
• CANMAT
• Lundbeck
Grant funding:
• Canadian Institutes of Health Research
• Canadian Psychiatric Association/Healthy Minds
• Michael Smith Foundation for Health Research
• Coast Capital Depression Research Fund
• Vancouver Coastal Health Research Institute
Stockholder: None
4. Learning objectives
• Introduce the concept and value of assessing QoL
in clinical settings;
• Introduce a specific scale to measure QoL in
people with BD and discuss its application in
clinical practice.
5. Outline
Part 1. What is QoL?
Part 2. Why assess QoL in clinical practice?
Part 3. Development of the QoL.BD
Part 4. Using the QoL.BD in clinical practice
Part 5. Next steps
Part 6. Q & A
7. What is quality of life?
“individuals’ perceptions of their position in life
in the context of the
culture and value systems in which they live
and in relation to
their goals, expectations, standards and concerns”
- World Health Organization, 1995
Kuyken W. et al. World Health Organization Quality of Life Assessment (WHOQOL) - Position Paper from the World
Health Organization. Soc Sci and Med 41 (1995), 10; 1403-1409.
8. What is quality of life?
“individuals’ perceptions of their position in life
in the context of the
culture and value systems in which they live
and in relation to
their goals, expectations, standards and concerns”
- where possible, subjectively assessed
9. “Individuals’ Perceptions”
The Schedule for the Evaluation of Individual Quality of
Life (SEIQoL)
• Use of SEIQoL assessment
method to evaluate
‘symptom interference’
with QoL
• Assessing QoL in a single
individual over time
Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999; 17:3603-3611.
10. “Individuals’ Perceptions”
Symptom
bother
50%
• Disk is presented to patients
with equal space given to
QoL and symptom
interference
• Patients rotate colours to
reflect impression of how
QoL much symptoms have
50% interfered with overall QoL in
the previous week
Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999; 17:3603-3611.
11. Nurse's assessment using SEIQoL disk to display nurse’s
perception of patient ‘symptom interference’ with QoL
Symptom
Bother
62%
QoL
38%
Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999; 17:3603-3611.
12. Doctor's assessment using SEIQoL disk to display nurse’s
perception of patient ‘symptom interference’ with QoL
QoL
28%
Symptom
Bother
72%
Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999; 17:3603-3611.
13. Patient’s assessment using SEIQoL disk to display
‘symptom interference’ with QoL
Symptom
Bother
18%
QoL
82%
Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999: 17:3603-
3611.
14. What is quality of life?
“individuals’ perceptions of their position in life
in the context of the
culture and value systems in which they live
and in relation to
their goals, expectations, standards and concerns”
15. Culture and value systems in which they live... QoL in the Michalak household: a
longitudinal analysis of cultural change
2009
2010
2007
2008
2011
16. What is quality of life?
“individuals’ perceptions of their position in life
in the context of the
culture and value systems in which they live
and in relation to
their goals, expectations, standards and concerns”
17. Qualitative study into QoL in BD
Study Aim –
To describe patient’s own experiences of how BD impacts QoL
Methods -
Purposeful sampling used to identify:
People with BD Type I/II (N = 35)
~ Median Age: 43 11 yrs
~ 64% female ~ 63% BD I
~ Range of illness states
Family members (N = 5)
Expert clinicians (N = 12)
Individual interviews,
thematic analysis.
Michalak et al. Qual Life Res. 2006, 15:25-37; Michalak et al. Bipolar Disord. 2007, 9:126-43.
18. Findings from qualitative research into QoL in BD
Social
Stigma Spirituality
Support
Independence Identity
19. What is quality of life?
Take home
messages
• Subjective
• Contextual
• Multidimensional
• Some dimensions of QoL may be of particular
importance to people living with BD
20. Part 2. What’s the rationale
for assessing QoL in clinical
practice?
Research Evidence
21. Rationale for assessing QoL in clinical practice
Research evidence
1. People attend to more than symptoms when
evaluating treatment outcomes
2. Treatments with the same impact on symptoms can
have different impacts on QoL
3. Mismatch between symptom and QoL change
common
4. ‘Because we can’
22. 1. People attend to more than symptoms when evaluating
treatment outcomes
Study:
• Psychiatric outpatients (N = 535) in treatment for MDD
• Surveyed about the most important factors in determining
remission
• Determinants of remission:
Absence of depression
Positive mental health
General well-being
Return to normal self
Others (N=12)
Source: Zimmerman, M. Am J Psychiatry. 2006;163(1):148-50.
23. 1. People attend to more than symptoms when evaluating
treatment outcomes
CREST.BD Study:
Aim
~ To explore self-management
strategies in people living well
with BD
Methods
~Purposeful sampling of
high- functioning individuals
w/ BDr
~Qualitative Focus Groups
People with BD Type I/II (N = 39)
~ Median Age: 43 13 yrs
~ 78% female ~ 78% BD I
~ Range of illness states
Michalak et al. Qual Life Res. 2006, 15:25-37; Michalak et al. Bipolar Disord. 2007, 9:126-43.
24. 1. People attend to more than symptoms when evaluating
treatment outcomes
Definitions of ‘WELLNESS’
Feeling Balanced
Maintaining Self-Confidence
Having Fun
Healthy Social Life
Meeting Goals
Maintaining Creativity
Michalak et al. Qual Life Res. 2006, 15:25-37; Michalak et al. Bipolar Disord. 2007, 9:126-43.
25. 2. Treatments with the same impact on symptoms can
have different impacts on QoL
Shi et al., (2002)
• Randomised BD type I (n = 453 ) patients with acute
mania to olanzapine or haloperidol
• Findings: Remission rates similar at 6 and 12
weeks, but…
– Olanzapine showed superior health functioning at
both time points
– Olanzapine showed greater impact on work
functioning at 12 weeks
26. 3. Mismatch between symptom and QoL change common
Percentage of Patients With First-Episode Psychotic Affective Disorders Who Reached
Syndromal (N=199) and Functional (N=181) Recovery Within 6 and 24 Months After First
Lifetime Hospitalization
Opportunity to
identify residual
problems that require
intervention ...
Source: Tohen et al. Am J Psychiatry. 2000;157(2):220-228
27. 4. ‘Because We Can’
Publications referencing QoL as a proportion of publications referencing BD
(Scopus database, terms in abstract, title or keywords), past 20 years
Exponential growth
(F (1,18) = 136.76,
p < .001, Adj R2 = .88)
But...
Sheer numbers still small
N for QoL
publications = 140
Vs.
N for symptom measure
publications = 1576
Source: Murray G, Michalak EE. Bipolar Disord. 2012;14(8):793-6.
29. Development of the QoL.BD
• Five year, mixed-method research program
• Aim - develop a self-report measure for use in:
1. Treatment and naturalistic studies
2. Routine clinical care
3. Self-management
30. Development of the QoL.BD
A priori criteria:
1. Valid across the spectrum of BD
diagnoses
2. Valid across mood states
3. Minimises cognitive demand, while
retaining strong psychometric properties
4. Sensitive to change
31. Development of the QoL.BD
• Two phases of scale development across
four sequential studies
Phase 1: Item Generation Phase
Phase 2: Item Reduction Phase
32. Phase 1: Item Generation
Qualitative
interviews (N=52) Initial item pool
(210 items)
Literature review
33. Phase 2: Item Reduction
Weighting exercise
Pilot questionnaire
(N = 25):
clarity, frequency and (139 items,
importance 13 domains)
Psychometric evaluation 91 items,
(N = 225, once, N = 93
7±2 days later) 14 domains
Final weighting exercise Full 56-item,
via CREST.BD (N = 40) 14 domain QoL.BD
35. QoL.BD Scale
PHYSICAL SPIRITUALITY
SLEEP FINANCES
MOOD HOUSEHOLD
12 Basic
Scales COGNITION SELF-ESTEEM
LEISURE INDEPENDENCE
SOCIAL IDENTITY
WORK
2 Optional Scales
(Included in Full QoL.BD STUDY
version only)
36.
37. Brief QoL.BD Version
12-item
12 Domain
QoL.BD Scale
Single item from
each of the 12
basic scales
38. Part 4. Using the QoL.BD in
clinical practice
- some common questions
39. Using the QoL.BD in clinical
practice, some common questions
1. How long does it take to complete?
2. Do I use the short or the full version?
3. In what mood phases should I apply it?
4. Is there anything else I should assess at the
same time?
5. What timeframe should I assess QoL over?
6. How do I detect meaningful change?
7. How do I go about incorporating the QoL.BD
in routine practice?
41. Additional Resources
QoL.BD www.crestbd.ca/dt_portfolio/quality-of-life/
Access to downloadable scales | Peer-reviewed papers | Videos | FAQs
NEW VIDEO SERIES:
QoL.BD TRAINING: QoL concepts, QoL.BD development and application
• What is Quality of Life?: http://youtu.be/7ZHKQi_FoRs
• Development of the QoL.BD: http://youtu.be/0_LrrT9W8gM
• What's the rationale for assessing QoL in clinical practice? http://youtu.be/rCexI7yhOZY
TRAINING VIDEOS: Applying the Quality of Life in Bipolar Disorder QoL.BD Assessment
Scale - clinical practice vignettes
• “Patient Vignette 1”: http://youtu.be/S85gqLDf30A
• “Patient Vignette 2”: http://youtu.be/KyVgxpAktbk
42. QoL.BD scale publications
• Michalak et al. Qual Life Res. 2006, 15:25-37
• Michalak & Murray. Bipolar Disord.
2010, 12(7):727-40.
• Murray & Michalak.
Bipolar Disord.
2012, 14(8):793-6
44. “QoL in people with BD: An e-health innovation project”
• One-year CIHR-funded Patient-Centred e-Health research
project
• Purpose:
– Further develop a web-based QoL.BD resource centre to support on-
line use via healthcare providers and people living with BD
• Outcomes:
– Development of on-line version (French and English) designed for
completion by people with BD
– Visual feedback
– Dovetailing into specific self-management resource recommendations
– Additional training videos and support tools