Experience of Symptoms and Disease Impact in Patients with Adenomyosis

Linda M. Nelsen (), William R. Lenderking, Robin Pokrzywinski, Zaneta Balantac, Libby Black, Shibani Pokras, Mary Beth Enslin, Melisa Cooper and Andrea S. Lukes
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Linda M. Nelsen: Value Evidence and Outcomes, GSK
William R. Lenderking: Evidera
Robin Pokrzywinski: Evidera
Zaneta Balantac: Evidera
Libby Black: Value Evidence and Outcomes, GSK
Shibani Pokras: Value Evidence and Outcomes, GSK
Mary Beth Enslin: Alternative Discovery and Development, GSK
Melisa Cooper: Alternative Discovery and Development, GSK
Andrea S. Lukes: Carolina Women’s Research and Wellness Center

The Patient: Patient-Centered Outcomes Research, 2018, vol. 11, issue 3, No 6, 319-328

Abstract: Abstract Background Adenomyosis is a poorly understood, benign disease of the uterus. Objective In this study, patient interviews were conducted to characterize the symptoms and impact of adenomyosis. Methods This was a cross-sectional study in which women with adenomyosis were recruited from five US clinics and a health-related social network forum. Participants (aged 18–55 years) were pre-menopausal with a history of regular menstrual cycles. Participants were interviewed about their experiences with adenomyosis, symptoms and impacts on day-to-day activities (concept elicitation), and subsequently about the occurrence, relative severity, and impact of symptoms (card-sorting exercise). Results In total, 31 women were interviewed. Mean duration since onset of first adenomyosis symptom was 5.7 years; 41.9% reported severe/very severe adenomyosis. Over 50 symptoms and 30 impacts of adenomyosis were reported in the concept elicitation; 87% of symptoms were reported after 7 interviews and 78% of impacts after 5 interviews, indicating a condition with a significant symptom burden and a consistent presentation. The most common symptoms were heavy menstrual bleeding (87%), cramps (84%), and blood clots during menstrual bleeding (84%). The most common impacts were burdensome self-care hygiene (71%), and fatigue/low energy (71%). In the card-sorting exercise, the most commonly endorsed symptoms were pain during menstruation/menstrual cramps and heavy menstrual bleeding (both frequently rated as severe). The symptom with the highest impact was heavy menstrual bleeding. Conclusion Initiatives to understand women’s experiences with adenomyosis may improve management of the condition. This study provides a first step in understanding their experience and new information on the symptom profile of adenomyosis.

Date: 2018
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DOI: 10.1007/s40271-017-0284-2

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