Study: LGBTQ patients recommend improvements for their cancer care


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Little is known about the cancer care experiences of lesbian, gay, bisexual, transgender and queer (LGBTQ) patients. This study looks at recommendations from the LGBTQ community for improving their cancer care. (6/20/19)

Contents

At a glance Questions for your doctor
Findings     Limitations               
Clinical trials Resources and reference


STUDY AT A GLANCE

This study is about:

the experiences of lesbian, gay, bisexual, transgender and queer (LGBTQ) cancer patients.

Why is this study important?

Lesbian, gay, bisexual, transgender and queer (LGBTQ) cancer patients have unique experiences and needs compared to their peers who are heterosexual and cisgendered (those whose sex assigned at birth matches their gender identity). For example, sexual minority women are more likely to delay health care, are less likely to have a usual place of care, and are more likely to exhibit higher risk behaviors associated with increased breast cancer risk such as smoking, obesity, heavy drinking.  However, the experiences of LGBTQ cancer patients in the context of cancer care are not well understood. This study looked at suggestions from LGBTQ cancer patients for improving their cancer care.

Study findings: 

Researchers looked at the words and stories of 273 LGBTQ cancer patients  for underlying themes. Five themes emerged.

LGBTQ cancer patients reported that they:

  • were affected by their health care providers’ LGBTQ-specific knowledge and skills, assumptions about sexual orientation and gender identity, and mistreatment.

A white cisgender lesbian wrote:

"I had been sick for a year prior to diagnosis but my primary care doctor kept trying to get me to take anxiety medication and treating my shortness of breath as panic attacks instead of a result of the large tumor in my chest which would later be found.  I feel a lot of that had to do with pre-conceptions about gay people."

  • decide how or if to tell their healthcare providers about their sexual identity based on how safe they feel in the clinic.

A Latina cisgender lesbian wrote:

"My partner did not come to the hospital because the only good hospital around was a Catholic hospital and I didn’t want my treatment compromised by them finding out about my ‘sinfu lifelstyle.’ An anti-gay surgeon could easily ‘accidentally’ miss one of the many small lesions of the cancer. Being discovered as a lesbian in a Catholic hospital can be lethal when having cancer."

  • had different clinical experiences based on their multiple identities (e.g., older and lesbian).

One woman wrote:

"As an alone, aging senior, I am also dealing with the fear of rejection by being ‘out’ even though I was very ‘out’ when younger and in a partnership."

  • received more effective care when members of their support group were included.

A white cisgender lesbian wrote:

"I needed to talk to other gay women with cancer.  I tried a support group for women with breast cancer. All the women were straight and THEY gave me a hard time for not doing reconstruction."

  • were often self-advocates who underwent significant changes as a result of their cancer diagnosis and treatment.

A cisgender gay man wrote:

"If I had not felt that both me and my partner were fully supported by the medical team I would have immediately gone elsewhere."

Based on their findings, the authors of this study issued guidelines for cancer care providers (see Conclusions below).

What do the experts say?

The Institute of Medicine and The Joint Commission have recommended asking sexual orientation and gender identity questions in clinical settings and including such data in a patient’s Electronic Health Record.  More information can be found here.

What does this mean for me?

If you are a member of the LGBTQ community, you should know that most health care providers have limited knowledge of the unique LGBTQ health and cancer needs. However, as a recent study reported, many health care providers have a high interest in learning more about the unique healthcare needs of this community.

Limitations:

This study was limited by the lack of diversity among the patients: most respondents were white, cisgender gays and lesbians. More research is needed on the experiences in the cancer care setting of bisexual and transgender people as well as LGBTQ people of color. Finally, because participants were recruited from LGBTQ-specific sources, the study sample likely excluded people who are not open about their sexual and/or gender identities.

Conclusions:

Based on the findings of this study, guidelines for cancer care providers were suggested. These include providing access to LGBTQ-specific training on cultural competency, responsiveness and humility; asking about and using patients’ names and pronouns; including support people of the patient’s choosing; and providing support resources that are relevant to the sexual orientation and identities of patients, among others.

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Posted (6/21/19)

Expert Guidelines

Current recommendation for cancer screening in transgender people

In June 2016, the University of California Center for Excellence in Transgender Health published the second edition of Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People, which include the following guidelines for cancer screening and treatment:

  • For transgender women, breast cancer screening beginning 5-10 years after use of feminizing hormones.
  • For transgender men who have not had mastectomy or who had breast reduction rather than mastectomy, routine breast cancer screening based on personal and/or family history.
  • Genetic counseling and/or testing if there is a known mutation in BRCA or other gene that increases breast cancer risk, or if the patient has a personal or family history of cancer that meets national guidelines for genetic counseling and testing.
  • Screening for other cancers (e.g. cervical, endometrial, prostate, etc.) should be based on an individual’s personal and/or family history of cancer.

Both the New York Times article and the guidelines emphasize the need for health care providers to assure that the medical system is treating transgender patients with appropriate care.

Questions To Ask Your Health Care Provider

  • Do you have experience working with LBTGQ patients?
  • What support networks are available to individuals who have my orientation or concerns?

Open Clinical Trials

The following are clinical trial for cancer studies that are specifically recruiting LGBTQ patients:

  • The Clinical trial (NCT02459769) Exercise Intervention for LGBT Cancer Survivors is recruiting lesbian, gay, bisexual, and transgender (LGBT) cancer survivors to evaluate an exercise intervention and its impact on psychological stress for cancer patients and their caregivers.

  • The RESTORE clinical trial (NCT03343093) focuses on improving sexual outcomes of gay and bisexual prostate cancer survivors by increasing the evidence base for rehabilitation.
     
  • The Pride Study is being conducted by doctors and research scientists at Stanford University and the University of California, San Francisco. It is the first large-scale, long-term national health study of people who identify as lesbian, gay, bisexual, transgender, queer (LGBTQ), or another sexual or gender minority. The goal of The PRIDE Study is to improve the health of LGBTQ people.
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