Background: Being a girl or woman living with attention-deficit/hyperactivity disorder (ADHD) is associated with significant impairment, including higher risk for suicide attempts, self-harm, unplanned pregnancies, and mood disorders. Yet, the vast majority of ADHD research has used all male or predominantly male samples. How ADHD presents and impacts females over the lifespan remains understudied and, thus, misunderstood by researchers, clinicians, educators, society, and affected females and their families. Meeting the unique needs of girls and women with ADHD is not possible without patient-centered outcomes research (PCOR) to understand their lived experiences.
Proposed Solution to the Problem: This project will convene listening and learning sessions with females with ADHD across the lifespan and other key PCOR partners to:
- Ask girls and women and their loved ones about their experiences and needs and the outcomes that matter to them
- Learn about needs of professionals who teach, evaluate, and treat this population
- Hear from females with ADHD how they want to be engaged in PCOR
Objectives: This project’s objective is to enhance engagement of girls and women living with ADHD in PCOR to improve health equity and reduce gender-based disparities in diagnosis, treatment, and outcomes for this at-risk population.
Activities: Seven listening and learning sessions with patient partners, family members, healthcare professionals, and educators will be held to: (1) explore the most pressing PCOR needs for girls and women with ADHD and (2) develop tools and techniques to foster meaningful PCOR engagement. Following the convenings, participants and the broader community will have the opportunity to prioritize the PCOR agenda and serve on a community advisory council (CAC) to provide ongoing PCOR engagement.
Projected Outcomes and Outputs:
- Short-term outcomes during the project period: The project team will have developed a stakeholder-driven PCOR agenda and solutions to having authentic engagement with the female ADHD community in PCOR, co-built a multi-stakeholder CAC to plan for PCOR sustainability, and fostered bidirectional support for PCOR.
- Medium-term outcomes (zero-two years post-project period): The project team will disseminate the prioritized research agenda through its robust social media, community, and professional networks to stimulate PCOR for and by females with ADHD.
- Long-term outcomes (three or more years post-project period): This project will provide guidance for engaging the female ADHD community and further integrate the findings of this project by securing funding for trials focused on the PCOR priorities identified through this project.
Patient and Stakeholder Engagement Plan: The patients are girls and women with ADHD. Stakeholders include families and caregivers, health professionals, and educators. Engagement and consultation with patients and stakeholders will continue throughout the project. Patient self-advocates will provide ongoing consultation as members of the steering committee and community co-facilitators will be trained to co-lead the convenings. Patients and stakeholders will engage in prioritization of the PCOR agenda and will be recruited to join the CAC to provide ongoing counsel to project leaders.
Project Collaborators: Faculty and staff within the Duke Center for Girls and Women with ADHD and the Duke ADHD Program will support this project through recruiting and promoting the convenings and dissemination of the prioritized research agenda and preferences for engagement in PCOR.