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Clinically Talking: Speaking to Sufferers About Uterine Fibroids

This item was developed in collaboration with The White Dress Project.

Medically assessed by Dr. Kristen A. Matteson

Uterine fibroids are the most common gynecological disease in women of childbearing age. By the age of 50, up to 80% of all women will have developed fibroids, with 20% of these women having symptoms that can range from bothersome to debilitating.

Even if women continue to have fibroid symptoms, awareness of uterine fibroids remains low. Lack of access, education and resources, as well as negative experiences in the health care system in the past, play a significant role in the number of women who go undiagnosed. Even when women are diagnosed, many say they were not informed about the range of treatment options that are available to them.

This guide can help healthcare providers (HCPs) better communicate with their patients about uterine fibroids so that patients can empower themselves to make informed decisions about their treatment. Patients should see their HCPs as partners who help them treat their fibroids so that they receive the best quality treatment possible.

  1. Use terms and language that the patient understands. It is important to explain complex medical terms so that the patient fully understands their condition. For example, instead of just using the medical term to describe the type of fibroid in a patient, use a chart to show the location of a fibroid.
  2. Speak slowly and clearly, and pause if you have questions to make sure the message is clear. Consider a patient’s health literacy when discussing their diagnosis and explain why they have certain symptoms. Active listening and time to ask questions can help a patient understand their diagnosis and what to do next.
  3. Avoid triggering language or gestures. Be very sensitive to the concerns expressed by the patient about their fibroids and how the fibroids affect their daily life. Some women may be aware that they are giving the impression of being pregnant when they are not; Comparing her bloated appearance to pregnancy can be especially stimulating for women who are having difficulty getting pregnant or are unable to get pregnant.
  4. Remind women that while fibroids are common, women do not experience compromised quality of life. Heavy bleeding and other symptoms can affect everyday life and the social, emotional, physical or material quality of life. In this case, it’s important to think about treatments that might help with these symptoms.
  5. Cultural competence and sensitivity are important. Educate yourself about the population you care for and be sensitive to issues such as eye contact, language barriers, diet restrictions, religious affiliation, if this has implications for healthcare and family member participation in decision making and gender identity. It’s important to remember that not everyone who has a uterus identifies as a woman. It is also important to pay attention to the tone. A negative tone can act as a lack of empathy or doubt about what the patient is reporting. A patient will be much more comfortable with a treatment plan for their fibroids if their cultural practices and needs are respected rather than dismissed or ignored.
  6. Use an interpreter service if necessary. It is important that the patient understand the nature of their diagnosis and some terms are not translated directly from English. The presence of an interpreter who can discern nuances in the translation can help the patient better discuss their symptoms and a possible treatment plan. This includes reaching out to a sign language interpreter if the patient is hearing impaired to ensure that the correct message is being conveyed through signing. Do not rely on family members / friends who may be with the patient as they may misinterpret medical terminology.
  7. Better consider the risk when addressing a health issue and creating a care plan. Some groups are at greater risk of developing symptomatic fibroids, such as African American women, and may develop larger and faster growing fibroids in earlier years. If your patient is a Black woman in her twenties and has abdominal pain and heavy menstrual periods, for example, make sure your exam includes testing for fibroids and also asks the patient about their family history of fibroids. Early diagnosis and treatment can improve your quality of life and prevent years of unnecessary pain. If it is a problem for your patient, it should be considered and taken seriously.
  8. Consider access and affordability when referring patients to other specialists / practices. Many patients do not live near a specialist, nor do they have transport to their practice or are insured for their visits. Reach out to community health workers to coordinate care and act as a liaison to ensure that access and affordability are not barriers to quality care.
  9. Make sure you provide everything to patients their possibilities. Some HCPs may skip certain treatment options due to cost and socioeconomic factors, especially in areas with insufficient resources such as rural communities with small hospitals or underfunded urban clinics, but every patient deserves to be aware of all of the treatment options that could help. In addition, black women are twice as likely to have a hysterectomy as white women, many of them of childbearing age. HCPs should point out any options that exist and indicate that asymptomatic fibroids may not require medical treatment at all. Doctors should be aware of the latest procedures, drug approvals, and holistic measures to keep their patients well informed.
  10. Assure patients of provider-patient confidentiality so they can be confident that their health concerns, diagnoses and questions will be treated confidentially. Social stigma and privacy concerns are major obstacles in rural areas where there is little anonymity. Developing trust and ensuring privacy help patients feel more comfortable discussing their fibroid symptoms and diagnosis.
  11. Whenever possible, offer telemedicine services to remove barriers such as transportation and location. While patients must be seen in person for ultrasounds and procedures, discussions about fibroid symptoms and post-treatment follow-up can be online or over the phone, depending on your insurance plan. Virtual visits can improve access for patients who would otherwise be left untreated. Mobile clinics should also be made available in communities that do not have access to technological resources. When doctors go to the patient, this not only increases comfort, but also creates better accessibility.

    This resource was produced with the assistance of Myovant Sciences.

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