Ella Jeffries
Pronouns: She Her
Research Mentor(s): Crystal Patil
Research Mentor School/College/Department: Health Behavior and Biological Sciences / Nursing
Program:
Authors: Ella Jeffries, Latoya Brown, Crystal Patil
Session: Session 4: 1:40 pm – 2:30 pm
Poster: 19
Abstract
Sickle cell disease (SCD) is an inherited and life-threatening blood disorder. Lysis of red blood cells and the characteristic sickled shape are caused by a genetic mutation that results in severe pain, organ damage, and early, death. Pain crises are the hallmark feature of SCD and the leading cause of emergency department visits and hospitalizations for people living with SCD. While the aging process is accelerated by SCD, the knowledge base around the aging process is limited. Our multidisciplinary team (anthropology, biochemistry, biopsychology, and nursing) is conducting formative research to identify specific research gaps and engage with community stakeholders so that we can co-design a study exploring aging among people living with SCD. To begin to fill this gap, we conducted a review of the literature and found four articles related to SCD and perimenopause/menopause, one cross-sectional survey, and three qualitative. Clearly, perimenopause/menopause is and understudied aging topic affecting cisgender women living with SCD. From the qualitative studies, it was noted that clinicians are aware of symptoms associated with perimenopause such as hot flashes, fatigue, sleep disturbances, and mood swings/changes occurring in midlife, however little information and best practices for supporting women with SCD through this natural aging process lacks clarity. Further, a commonly used medication that helps to prevent pain crises, hydroxyurea, may affect reproductive hormones and fertility, but its relationship to perimenopause/menopause is not known. To fill this knowledge gap, our goal is use a community-engaged approach to co-design a mixed methods study to characterize and explore the perimenopausal/menopausal experience with women over the age of thirty living with SCD.
