Crossroad decisions in deep endometriosis treatment options: a qualitative study among patients

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Authors:

Jeroen Metzemaekers, M.D., Suzanne Slotboom, M.Sc., Jonathan Sampat, M.D., Polo Vermolen, M.D., Mathilde J. G. H. Smeets, M.D., M. Elske van den Akker-van Marle, Ph.D., Jacques Maas, M.D., Ph.D., Esther C. Bakker, Ph.D., Marjan Nijkamp, Ph.D., Stephanie Both, Ph.D., Frank Willem Jansen, M.D., Ph.D.

Abstract:

Objective

To study the experiences, considerations, and motivations of patients with endometriosis in the decision-making process for deep endometriosis (DE) treatment options.


Design

Qualitative study using semi-structured in-depth focus group methodology.


Setting

University medical center.


Patient(s)

A total of 19 Dutch women diagnosed with DE between 27 and 47 years of age.


Intervention(s)

Not applicable.


Main Outcome Measure(s)

Focus group topics were disease impact and motives for treatment, expectations of the treatment process, and important factors in the decision process.


Result(s)

Women reported that pain, fertility, and strong fear of complications are important decisive factors in the treatment process. The goal of conceiving a child is considered important, however, sometimes doctors emphasize this topic too much. It emerged that complication counseling is frequently about surgical complications, whereas side effects of hormonal treatments are neglected. Shared decision making and information about treatment options, complications, and side effects are not always optimal, making it difficult to make a well-considered choice. Despite negative experiences encountered after surgery, the positive effect of surgery ensures that most women do not regret their choice.


Conclusion(s)

In the treatment decision process for patients with DE, pain is almost always the most important decisive factor. The wish to conceive and strong fear of complications can change this choice. Doctors should understand the importance of fertility for the majority of women, but, also, if this is not considered paramount, respect that view. To improve shared decision making, exploration of treatment goals, training of healthcare providers, and better patient information provision are desirable.

Fertility and Sterility

Editorial Office, American Society for Reproductive Medicine

Fertility and Sterility® is an international journal for obstetricians, gynecologists, reproductive endocrinologists, urologists, basic scientists and others who treat and investigate problems of infertility and human reproductive disorders. The journal publishes juried original scientific articles in clinical and laboratory research relevant to reproductive endocrinology, urology, andrology, physiology, immunology, genetics, contraception, and menopause. Fertility and Sterility® encourages and supports meaningful basic and clinical research, and facilitates and promotes excellence in professional education, in the field of reproductive medicine.

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