At Dama, we continue to conduct research to close the women's health data gap, and build tools that help clinicians make more personalized, evidence-based decisions from the start.
Most of the conversation online pushes the same narrative: hormones are unsafe and associated with more negative side effects than benefits.
Clinically and anecdotally, we've known for a long time that there's a huge variability in how patients respond to hormonal treatments such as contraceptives and MHT. However, there has not been much published reflecting true patients experiences with exogenous hormone use, particularly without the influence of outrage dynamics. Moreover, Biobanks often don't collect the nuances in side effect experiences with exogenous hormone use, and even the EMR data is often not consistently granular enough to answer these questions.
At Dama Health, we continue to prioritize doing the groundwork research. Our team just published some of the findings from the Dama Health Genetics and Contraception Study - a UK-based case-control study of 1,133 hormonal contraceptive users, which we conducted during the Illumina Accelerator Programme. We set out to identify which medical, lifestyle, and genetic factors are associated with experiencing severe side effects leading to discontinuation.
Introduction:
While many women worldwide use contraception, there is a paucity of research on individual experiences of side effects. To address this gap, we investigated individual’s contraception experiences.
Study Design:
Women aged 18 to 35, living in the UK were invited to participate in an online survey on contraception. Free text responses were collected. Through a directed content analysis approach, we developed a coding framework (based on existing literature and initial response review) including six themes; method(s) of contraception, side effect(s) experienced, impact of side effect(s), timing of side effect(s), interactions with healthcare practitioners, and trial-and-error.
Results:
Overall, 337 participants provided free-text responses. Side effect experiences and impacts varied greatly between individuals and contraceptives. Most participants described negative effects, including mental health issues and bleeding problems. However, some shared positive experiences mainly related to bleeding management or the absence of side effects. Participants described how side effects often varied or appeared over time. Some participants felt unheard by healthcare practitioners.
Conclusion:
This study highlights how specific contraceptive experience is to the individual. We advocate for a patient-centred approach to contraceptive counselling. Practitioners should play an active role in improving contraception prescription, acknowledging the diverse experiences and preferences of patients.
This evidence gives clinicians context to consider today:
This evidence validates what some clinicians have seen in their clinic rooms daily: the individual nature of contraceptive experiences and how side effects are often overlooked, emphasising the need for patient-centred contraceptive counselling that considers the impacts on physical and mental health.
Read the full paper here: Stewart C, Stevens R, Kennedy F, Cecula P, Rueda Carrasco E, Hall J. Experiences and impacts of side effects among contraceptive users in the UK: exploring individual narratives of contraceptive side effects. European journal of Conception & Reproductive Health Care [Internet]. 2023 Autumn;323:115125. Available from: https://www.tandfonline.com/doi/10.1080/
Enormous thanks to the team who made this happen: Rose Stevens, Jérôme Wojcik, Taichi Ochi, Elena Rueda, Paulina Cecula, Aaron Lazorwitz, MD, PhD