The Bipolar Youth Action Project (BYAP)
Erin MichalakAssociate Professor
Department of Psychiatry University of British Columbia
Network Lead, CREST.BD
[email protected]@crest_bd
@erin_michalak
Objectives
1. Review QoL and self-management in youth with BD literature
2. Introduce the BYAP project
3. Share pilot data from the BYAP study, and lessons learned on effective youth engagement
QoL in BD publications Publications referencing QoL as a proportion of publications referencing BD (Scopus database, terms in abstract, title or keywords), past 20 years
Source: Murray G, Michalak EE. Bipolar Disord. 2012;14(8):793-6.
Exponential growth (F (1,18) = 136.76,
p < .001, Adj R2 = .88)
But...
Sheer numbers still smallN for QoL
publications = 140Vs.
N for symptom measure publications = 1576
MethodsSTOP-EM project, UBC Hospital, longitudinal naturalistic study of FEM patients
- N=63, majority FEM, N=3 mixed episodes
- Mean age 22.8 yrs (±4.3)
- N=30 (48%) male
- Duration of illness 3.0 yrs (±3.5)
- N=41 (65%) psychosis in index manic episode
- Comorbid substance/alcohol misuse⁄dependence, N=17 (27%)
Michalak et al., Bipolar Disorders, 2013: 15: 188–198.
QoL in first-episode mania
0 Mths 6 Mths 12 Mths 18 Mths0
102030405060708090
100
Mean Q-LES-Q Score
QoL (mean Q-LES-Q) and HRQOL (SF-36) baseline - 18 months in FEM patients (N=63)
**
Q-LES-Q at 12 and 18 mths sig. improved over baseline
SF-36 PHC and MHC summary scores sig. improved at 6, 12 and 18 mths
*
**** *
Michalak E.E. et al., Bipolar Disord 2013: 15: 188–198.
QoL (mean Q-LES-Q) scores compared to STEP-BD sample and NMI controls
• STEP-BD range 47.7 (±3.0) (depressed) to 61.5 (±4.3) (manic)
• Schechter study 81.8 (±13) no MI normal controls
Zhang H. et al., Compr Psychiatry. 2006: 47(3):161-8.Schechter D, et al., Psychiatry Res. 2007: 30;152(1):45-54.Michalak E.E. et al., Bipolar Disord 2013: 15: 188-198.
Predictors of Q-LES-S scores in FEM sample
Michalak E.E. et al., Bipolar Disord 2013: 15: 188-198.
Baseline – illness duration and depression severity predicted 50% of variance in QoL
# of previous depressive episodes and depression severity predicted QoL at subsequent time points
Self-management in BD (in adults)
Study Aim – To identify self-management strategies used by people living well with BD
Methods - Purposeful sampling used to identify:
~ People with BD Type I/II (N = 32)~ Median Age: 41±13 yrs~ 63% female ~ 78% BD I~ Functioning well
Individual interviews or focus groups, thematic analysis.
Suto et al. (2010) JAD, 124 (1-2):76-84; Murray et al (2011) Clinical Psychology and Psychotherapy, 18:95-109.
.
BD self-management strategies (in adults)
Delphi Project Results:
Maintaining balance:
1. Calming strategies2. Medical management 3. Maintaining hope 4. Physical activity
Stopping progression:
5. Forward Planning6. Early Intervention7. Decreasing stimulants
In press, Journal of Affective Disorders
Sleep, rest, diet and exercise
Regular monitoring and adjustment
Reflective, meditative, spiritual practices
Understanding BD, educating others
Connecting with others
Enacting a plan
Suto et al. (2010) JAD, 124 (1-2):76-84;
Murray et al (2011) Clinical Psychology and Psychotherapy, 18:95-109.
Gaps in the BD QoL/self-management fields
– Little to no research on self-management in youth with BD
– Little to no evidence on how youth can optimally access evidence on self-management once generated
BYAP Project Team • Erin Michalak, CREST.BD & Andrea Paquette, BDSBC, co-leads• Laura Lapadat & Anna Graham, Youth Action Group (YAG) co-
leads • BYAP YAG members • Eugenia Canas, MindYourMind, YAG Mentor, Don Kattler,
clinical support• Drs. Joanna Cheek & Wei-Yi Song, co-investigators
Goals and Objectives
GOAL 1: Identify and share strategies youth with BD living on Vancouver Island use to stay well Objective 1: Document specific strategies youth with BD living on Vancouver Island use to stay well
Objective 2: Identify optimal methods for increasing the uptake/application of this knowledge
Goals and Objectives
GOAL 2: Increase the Vancouver Island youth BD community’s capacity to engage in and undertake mental health research
Objective 1. To engage and train a group of youth from Vancouver Island in CBPR methods
Methods and Milestones
• 2-year project blending Community-based Participatory Based Research (CBPR), qualitative, arts-based and ‘integrated knowledge translation’ (KT) methods
Aug. 2013 – Feb. 2016
• Research training days x2• On-going research and KT training (e.g., 7 YAG
meetings in Year 1)• Forum 1• Focus group analysis • Forum 2• KT design• KT implementation
Forum #1: Demographics
• N=21 • gender: 14 female, 6 male, 1 other• ethnic background: N=14 (67%)
Caucasian• age: mean 21 years (SD±3.1)• diagnosis: N=5 (24%) BD type 1,
N=6 (29%) BD type II, remainder NOS
• Geography: N=16 (77%) from Victoria, N=5 (23%) from North Island
Forum #1: Focus Group Methods
• 5 x60 minute focus groups, adult facilitator and youth co-facilitator
• Audio-recorded, transcribed verbatim
• Thematic analysis performed by youth-adult dyad
Focus Group Questions
1. Are there self management strategies that you have found are helpful for living well with BD?
2. Are there strategies that might are especially useful for younger people with BD?
3. How did you learn about these strategies?
4. What suggestions for effective self-management would you give to a young person who has just been diagnosed with BD? – what would you want them to know?
Healthy lifestyle
Medication, diet, exercise, sleep, avoiding substances
Support networks
Positivity, respect of autonomy
In-the-moment
strategies
Self-awareness, mood-state-specific strategies
Qualitative themes
“I was so relieved when I was diagnosed. Because I was, for the longest time, just thinking, “what’s wrong with me?”
“You’re not alone… there’s many who suffer like you.”
“Just [like my] mom always told me… keep going.”
“Don’t be ashamed of… your illness [or] of taking the steps necessary to keep yourself better.”
In their words…
Lessons learned • youth with BD have valuable knowledge to share
• self-management of BD in youth not dissimilar to that of adults, but…
• preferred KT methods differ
• remarkable proactivity required by youth to find health information
• CBPR projects take considerable effort…
• but the results are worth it
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