1. February 27, 2019
An Integrated Self-Management Intervention for Adolescents with Polycystic Ovary Syndrome
Cara C. Young, PhD, RN, FNP-C
Assistant Professor

2. Mission of the School of Nursing (SON)
Research at the SON is designed to improve the health of underserved, vulnerable, and under-studied populations.
This approach supports the idea that nursing research underpins graduate education and advances the science of health promotion and disease prevention.

3. Background & Rationale
PCOS affects 7-18% of reproductive-age women (manifests during adolescence)
Associated with multiple morbidities
Often distressing physical manifestations
Adverse impact on mental health, which in turn may impact self-management

4. Study Design & Population
Phase 1: Series of focus groups to explore self-management and develop a mindfulness-based healthy lifestyle intervention
Phase 2: Pilot RCT testing Project WOW vs Enhanced Usual Care Control
Population
Phase 1: Adolescents (14-18 years) with PCOS and parents of adolescents with PCOS
Phase 2: Adolescents (14-18 years) with PCOS, OR (obesity AND secondary amenorrhea), OR (excessive and frequent menstruation)

5. Lessons Learned
Focus groups provided important insights to both individual and family self-management of PCOS & significant contribution to final intervention
Focus on health promotion vs. weight loss (Project Working to Optimize Wellness: Project WOW)
Inclusion of sleep as a primary intervention target
Design change necessary due to focus group participants requesting to be in the intervention
Using mindfulness as a foundation of paying attention to their thoughts and current health behaviors with non-judgment and self-compassion has been highly acceptable to participants (and contributed to health behavior change and improved psychological well-being).

6. Challenges
Need for bilingual staff and materials from the early stages
Clinic-based recruitment inefficient for group-based interventions
Scheduling of group interventions challenging
Recruitment methods missing many vulnerable adolescents (e.g., undiagnosed, lack of access)

7. Ways of Addressing Challenges
Request necessary resources up front
Be creative and plan for as varied of recruitment methods as possible
Alternate intervention delivery mechanisms
Utilizing technology platforms for delivery may not be ideal, but…

8. Don’t let the perfect be the enemy of the good
Voltaire: “The best is the enemy of the good.
Confucius: “Better a diamond with a flaw than a pebble without.”
Shakespeare: “Striving to better, oft we mar what’s well.”
Don’t let the perfect be the enemy of the good

9. THANK YOU