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Optimizing Outcomes in Bipolar Disorder: Measuring and Maximising Quality of Life

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  • 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 ParikhUniversity 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• LundbeckGrant 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 InstituteStockholder: 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. OutlinePart 1. What is QoL?Part 2. Why assess QoL in clinical practice?Part 3. Development of the QoL.BDPart 4. Using the QoL.BD in clinical practicePart 5. Next stepsPart 6. Q & A
  • 6. Part 1. What is quality of life?
  • 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, 1995Kuyken W. et al. World Health Organization Quality of Life Assessment (WHOQOL) - Position Paper from the WorldHealth 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 weekWaldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999; 17:3603-3611.
  • 11. Nurses assessment using SEIQoL disk to display nurse’s perception of patient ‘symptom interference’ with QoL Symptom Bother 62%QoL38% Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999; 17:3603-3611.
  • 12. Doctors assessment using SEIQoL disk to display nurse’sperception 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 liveand in relation totheir goals, expectations, standards and concerns”
  • 15. Culture and value systems in which they live... QoL in the Michalak household: alongitudinal 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 liveand in relation totheir 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 rationalefor assessing QoL in clinical practice? Research Evidence
  • 21. Rationale for assessing QoL in clinical practiceResearch evidence1. People attend to more than symptoms when evaluating treatment outcomes2. Treatments with the same impact on symptoms can have different impacts on QoL3. Mismatch between symptom and QoL change common4. ‘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 QoLShi 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 commonPercentage of Patients With First-Episode Psychotic Affective Disorders Who ReachedSyndromal (N=199) and Functional (N=181) Recovery Within 6 and 24 Months After FirstLifetime 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.
  • 28. Part 3. Development of the QoL in Bipolar Disorder (QoL.BD) Scale
  • 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.BDA 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 Qualitativeinterviews (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 domainsFinal weighting exercise Full 56-item, via CREST.BD (N = 40) 14 domain QoL.BD
  • 34. Full QoL.BD Version 56-item 14 Domain QoL.BD Scale
  • 35. QoL.BD Scale PHYSICAL SPIRITUALITY SLEEP FINANCES MOOD HOUSEHOLD12 Basic Scales COGNITION SELF-ESTEEM LEISURE INDEPENDENCE SOCIAL IDENTITY WORK 2 Optional Scales (Included in Full QoL.BD STUDY version only)
  • 36. Brief QoL.BD Version 12-item 12 Domain QoL.BD ScaleSingle item from each of the 12 basic scales
  • 37. Part 4. Using the QoL.BD in clinical practice- some common questions
  • 38. Using the QoL.BD in clinicalpractice, 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?
  • 39. www.crestbd.ca/dt_portfolio/quality-of-life/ Access long and briefQoL.BD Scales in 3 languagesAccess online training videoswww.youtube.com/CRESTBD
  • 40. Additional ResourcesQoL.BD www.crestbd.ca/dt_portfolio/quality-of-life/ Access to downloadable scales | Peer-reviewed papers | Videos | FAQsNEW 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• Whats the rationale for assessing QoL in clinical practice? http://youtu.be/rCexI7yhOZYTRAINING 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
  • 41. 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
  • 42. Part 5. Next steps
  • 43. “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

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