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

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.

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

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)

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).

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)

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…

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

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