The Bipolar Youth Action Project (BYAP)

Erin MichalakAssociate Professor

Department of Psychiatry University of British Columbia

Network Lead, CREST.BD

erin.michalak@ubc.ca@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