LGBT Best and Promising Practices Throughout the Cancer Continuum

Explore the best and promising practices, understand cross-cutting issues, and filter the strategies throughout the stages of the cancer continuum.

Cancer has indelibly left a disproportionate mark on the Lesbian, Gay, Bisexual, and Transgender (LGBT) communities. We understand more than ever how the stress and stigma experienced by sexual and gender minority communities interacts with cancer, one of the most devastating of health challenges.

For these reasons and more, LGBT HealthLink, the National LGBT Cancer Network, and our LGBT BPP Cancer Committee undertook the important task to identify best practices in this arena with the hope that many will take this information and create better systems, policies, and practices out of these best and promising practices found in this report.

How To Use This Report

Prevention/Health Promotion Info

  • Best and Promising Practices
    Cross-Cutting Issues
  • Include SOGI questions on population-based surveillance instruments supported through government funds.

    • For example, BRFSS, NHANES, NHIS, YRBSS
    • Data
  • Involve culturally competent and trained community health workers to augment and/or deliver prevention and health promotion messages.

    • For example, health educators such as promotoras, navigators, popular opinion leaders, LGBT peer leaders
    • Workforce
  • Ensure that disclosure of SOGI and sexual behavior is safe (confidential, private, affirming, accepted without judgment) during all individual intake and clinical/community encounters.

    • Workforce
    • Systems
  • Recognize that disclosure of layered and intersectional identities is complicated for LGBT individuals seeking health prevention services. They must negotiate whether and how to come out to multiple providers about being LGBT.

    • Workforce
    • Systems
    • Diversity
  • Cultural competence to conduct LGBT health promotion activities should involve measurable competencies, including but not limited to a measure of engagement with the local LGBT communities.

    • Workforce
    • Information
  • Provide ongoing education on LGBT cultural competence to the entire health care work force, especially those that interact with LGBT patients, their family, and their chosen support person(s).

    • Workforce
    • Diversity
  • Create a welcoming and safe environment for LGBT patients (including but not limited to gender-neutral restrooms, physical and virtual environments, forms, health literature, and in-person communications occurring in the health setting).

    • Systems
  • Acknowledge and prioritize health promotion programs in consultation and collaboration with the LGBT communities within your service area to ensure that messages are targeting the communities’ perceived needs.

    • Systems
    • Information
  • Develop and implement effective guidelines, interventions, and programs aimed at decreasing the cancer burden for LGBT populations, with intentional and careful adaptation for all segments of the LGBT communities.

    • Systems
    • Information
    • Diversity
  • Develop and/or implement LGBT-specific health education and prevention messages, materials (print and online), and resources, developed in consultation with community advisory boards and other consumer groups.

    • Information
    • Diversity
  • Public Health Department Recommendation:

    Include SOGI data in risk and behavioral surveillance tools, Behavioral Risk Factor Surveillance System (BRFSS), Youth Behavioral Risk Factor Surveillance System (YRBSS), Adult Tobacco Survey (ATS), etc.

    • Data
  • Public Health Department Recommendation:

    Identify LGBT liaison(s) (point person) to provide cross-cutting subject matter expertise on LGBT issues.

    • Workforce
  • Public Health Department Recommendation:

    Collaborate with community partners on LGBT-tailored prevention and health promotion activities.

    • Workforce
    • Diversity
  • Public Health Department Recommendation:

    Seek and fund programs and campaigns that address LGBT cancer prevention and health promotion.

    • Systems
  • Public Health Department Recommendation:

    Enhance patient navigation projects (where available) to provide culturally relevant services for LGBT cancer survivors.

    • Systems
  • Public Health Department Recommendation:

    Implement and support LGBT-tailored programs, messages, and policies that improve access to physical activity, nutrition, obesity prevention, smoking cessation, cancer awareness, cancer related vaccines (i.e., human papillomavirus (HPV) immunizations), and chronic disease programs.

    • Systems
    • Information
  • Public Health Department Recommendation:

    Include LGBT communities in state cancer plans.

    • Systems
    • Information
    • Diversity
  • Public Health Department Recommendation:

    Include LGBT community-based organizations in state cancer coalitions.

    • Systems
    • Diversity
  • Public Health Department Recommendation:

    Integrate lessons learned from established Department of Health programs that have existing relationships with the communities (i.e., HIV/AIDS, tobacco).

    • Information

Screening Info

  • Best and Promising Practices
    Cross-Cutting Issues
  • Identify LGBT individuals who are at higher risk for cancer and revise screening guidelines to incorporate LGBT-inclusive risk assessment.

    • Data
    • Systems
  • Train all staff (all levels) in providing culturally competent service to LGBT patients, their family, and their chosen support person(s) throughout the screening process.

    • Workforce
  • Identify, use, and refer to screening facilities known to be culturally competent in delivering health services to LGBT individuals.

    • Workforce
  • Develop and/or use LGBT-tailored cancer screening guidelines for LGBT communities.

    • Workforce
    • Information
    • Diversity
  • Engage culturally competent patient navigators for LGBT patients from the time of screening through the cancer care continuum.

    • Workforce
    • Information
    • Diversity
  • Eliminate discriminatory and arbitrary exclusion from screening procedures due to discordance between gender markers and anatomy.

    • Systems
  • Work with the local LGBT communities to identify and reduce regional and specific barriers to timely cancer screening.

    • Systems
  • Ensure that LGBT patients receive prompt follow up after abnormal screening results, as well as timely and culturally competent coordination of transition to cancer care in order to mitigate attrition and delays.

    • Systems
    • Information
  • Include LGBT individuals’ support networks (i.e., family of choice) whenever possible during screening process and procedures.

    • Systems
    • Diversity
  • Tailor screening messages and utilize effective media with particular attention to diverse sub-groups within LGBT communities.

    • For example, involve screening messengers, ambassadors, and witnesses known as credible in their respective communities
    • Information
    • Diversity
  • Educate the LGBT communities about the importance of cancer screening, with emphasis on malignancies that disproportionately affect LGBT individuals, using a variety of media and campaigns shown to be effective or promising with LGBT communities in general and/or with specific sub-groups.

    • Information
    • Diversity
  • Public Health Department Recommendation:

    Include LGBT as a designated special population in cancer screening programs funded by Health Departments to ensure there is adequate tailored outreach, tailored services, and program monitoring.

    • Data
  • Public Health Department Recommendation:

    Provide management, leadership, and coordination for LGBT-centered screening promotions.

    • Workforce
    • Systems
    • Information
  • Public Health Department Recommendation:

    Adopt federal model of requiring LGBT non-discrimination policy statements for all Health Department-funded entities.

    • Systems
  • Public Health Department Recommendation:

    Establish partnerships with multiple (3 minimum, local or national) LGBT organizations to vet and provide technical assistance in the development and implementation of screening campaigns/materials.

    • Systems
    • Information
  • Public Health Department Recommendation:

    Support culturally competent delivery of services that increase access to and utilization of cancer screening.

    • Systems
    • Diversity
  • Public Health Department Recommendation:

    Support recruitment and utilization of patient navigators that are culturally competent and sensitive to the disparities and needs of the LGBT population.

    • Systems
    • Diversity

Diagnosis Info

  • Best and Promising Practices
    Cross-Cutting Issues
  • Collect relevant diagnostic SOGI data in SEER, NPCR, and other population-based registries and databases.

    • Data
  • Collect and include SOGI data in patient intake and registration forms, medical records, patient satisfaction surveys, and health outcome measures. Then ensure SOGI data are collected in cancer registries, other population-based registries, and databases.

    • Data
    • Systems
  • Include LGBT individuals in research trials of diagnostic tests.

    • Data
    • Systems
  • Ensure health care providers are knowledgeable of unique health care needs of LGBT individuals.

    • Workforce
  • Develop guidelines for culturally competent LGBT patient navigation programs including training for all patient navigators.

    • Workforce
    • Systems
  • Train all staff who interact with patients/caregivers (including clerical, technicians, patient navigator, pharmacy, housekeeping, food service, etc.) in LGBT cultural competence.

    • Workforce
    • Diversity
  • Mitigate delays and attrition between screening and diagnosis, and between diagnosis and treatment in compliance with established guidelines by ensuring timely and culturally competent coordination of care.

    • Systems
  • Provide gender-neutral diagnostic facilities and programs – particularly in relation to gendered cancers (e.g., breast or gynecological cancers) that may take place in gender-specific facilities.

    • Systems
  • Eliminate discriminatory and arbitrary exclusion from diagnostic testing, (e.g., due to discordance between gender markers and anatomy).

    • Systems
    • Information
    • Diversity
  • Anticipate, identify, and eliminate barriers to diagnostic procedures for LGBT individuals and communities.

    • Systems
    • Diversity
  • Include patients’ support networks (i.e., family of choice) during diagnosis and decision making.

    • Systems
    • Diversity
  • Develop and distribute culturally appropriate information materials at time of diagnosis, procedures, and at follow-up appointments.

    • Information
  • Public Health Department Recommendation:

    Educate about the need for NAACR standards to include SOGI.

    • Data
  • Public Health Department Recommendation:

    Collaborate with NPCR, SEER, ACS, and others on the reporting of SOGI data as part of cancer incidence and mortality publications.

    • Data
  • Public Health Department Recommendation:

    Support policies and programs that address LGBT compliance with established clinical time intervals from screening to diagnosis.

    • Systems

Treatment Info

  • Best and Promising Practices
    Cross-Cutting Issues
  • Collect relevant diagnostic SOGI data in SEER, NPCR, and other population-based registries and databases. Then ensure SOGI data are collected in cancer registries, other population-based registries, and databases.

    • Data
  • Include SOGI categories as part of core demographic data in clinical studies/trials and a requirement for human subject research.

    • Data
    • Systems
  • Collect SOGI data in patient intake forms, clinical encounters, patient satisfaction surveys, and health outcome measures. Then ensure SOGI data are collected in cancer registries, other population-based registries, and databases.

    • Data
    • Systems
  • Maintain appropriate hormone regimens and transition-related services for transgender and gender variant patients during cancer treatment as a standard of care, in the absence of compelling data to the contrary.

    • Workforce
  • Ensure compliance with treatment guidelines regardless of SOGI or gender transition care.

    • Workforce
    • Systems
  • Ensure nondiscrimination on the basis of SOGI in hospital visitation, surrogate medical decision making, etc. for Centers for Medicare & Medicaid Services and Joint Commission Accrediting Standards.

    • Workforce
    • Systems
  • Include LGBT topics in all cultural competence training across the health care treatment workforce (including clerical, technicians, patient navigator, pharmacy, housekeeping, food service, etc.).

    • Workforce
    • Diversity
  • Ensure the inclusion of LGBT individuals in all private and public human subjects cancer research.

    • Systems
  • In the absence of LGBT-specific treatment guidelines, follow standard of care/current treatment data to meet the standard of care.

    • Systems
  • Ensure timely and culturally competent coordination of care in order to mitigate delays and attrition between screening and diagnosis and between diagnosis and treatment to comply with established guidelines.

    • Systems
  • Provide gender neutral diagnostic facilities and programs for all cancers, including cancers traditionally treated in gender-specific facilities.

    • Systems
  • Address sexual intimacy and other quality of life (e.g., fertility, gender reassignment surgery) concerns as they relate to treatment options.

    • Systems
    • Information
  • Be aware of and responsive to barriers based on SOGI in symptom management.

    • Systems
    • Information
  • Public Health Department Recommendation:

    Educate appropriate bodies about the importance of LGBT cultural competence training as part of provider licensing.

    • Workforce
  • Public Health Department Recommendation:

    Provide LGBT-focused CME trainings for health care providers.

    • Workforce
  • Public Health Department Recommendation:

    Establish and support incentive programs that address LGBT health care provider shortages

    • Workforce
  • Public Health Department Recommendation:

    Support policies that address and encourage LGBT culturally competent treatment.

    • Workforce
    • Systems
  • Public Health Department Recommendation:

    Support policies and programs to improve LGBT compliance with established clinical time intervals from screening to treatment.

    • Systems
  • Public Health Department Recommendation:

    Collaborate with hospitals and other health care systems to include LGBT issues in Patient Bill of Rights.

    • Systems
    • Information
  • Public Health Department Recommendation:

    Create and/or expand culturally competent LGBT provider listings/registries.

    • Systems
    • Information
    • Diversity

Survivorship Info

  • Best and Promising Practices
    Cross-Cutting Issues
  • Fund and conduct research on the effectiveness of multiple intervention strategies with LGBT cancer patients/survivors.

    • Data
  • Offer LGBT cancer survivors access to culturally competent support services either through the creation of LGBT-specific support groups, referrals to community groups, or at a minimum training support service staff to provide LGBT culturally competent care.

    • Workforce
    • Systems
  • Offer LGBT families of choice access to culturally competent support services either through the creation of LGBT-specific groups, referrals to community groups, or at a minimum training support service staff to provide LGBT culturally competent care.

    • Workforce
    • Systems
  • Avoid gendered assumptions (e.g., breast reconstruction always being desired), including battle metaphors (e.g., fighting cancer) when providing services to LGBT cancer survivors.

    • Workforce
    • Information
  • Train all staff who interact with LGBT patients/caregivers (including clerical, technicians, patient navigator, social work, pharmacy, housekeeping, food service, etc.) in culturally competent language and LGBT survivorship issues.

    • Workforce
    • Diversity
  • Provide cultural and age appropriate cancer services to LGBT youth survivors.

    • Workforce
    • Diversity
  • Recognize the complexity of disclosure for LGBT survivors who must negotiate whether and how to come out to multiple providers about being SOGI and to potential sexual partners about their cancer status. Respect that sometimes withholding is safer.

    • Workforce
    • Diversity
  • Address directly (or via referral) the legal and financial impact of cancer on LGBT individuals and their families of choice.

    • Systems
    • Information
  • Develop protocols for protecting the fertility options of LGBT cancer patients prior to treatment and include survivors in decision making about fertility.

    • Systems
    • Information
  • Offer LGBT survivors and their family of choice culturally competent information about the impact of cancer treatment on their sexual health, intimacy, and reproductive health.

    • Information
  • Public Health Department Recommendation:

    Eliminate barriers to access.

    • Systems
  • Public Health Department Recommendation:

    Collaborate with hospitals and other health care systems to include LGBT issues in Treatment Summaries and Cancer After Care Plans/Survivorship Care Plans.

    • Systems
  • Public Health Department Recommendation:

    Develop and maintain a list of LGBT culturally competent support groups, programs, and resources.

    • Systems
    • Information
  • Public Health Department Recommendation:

    Support policies, systems change, research, and programs that enhance survivorship for LGBT patients and their families (legal, psychosocial, employment, primary care, nutrition support, access to care, etc.).

    • Information

Palliative Care & End Of Life Info

  • Best and Promising Practices
    Cross-Cutting Issues
  • Create open-access registries with ratings of hospices' and health care organization's cultural competence in caring for LGBT patients.

    • Data
  • Include SOGI variables in quality of care metrics and professional organizations, and consumer surveys.

    • Data
  • Collect SOGI data for all patients at initial encounters, and create individualized plans in regard to disclosure or nondisclosure of SOGI to others.

    • Data
    • Systems
  • Conduct research on the end-of-life/chronic illness experiences of LGBT patients and their caregivers, including the development of LGBT-specific psychosocial, spirituality, and existential distress measures.

    • Data
    • Diversity
  • Provide in-person and/ or virtual access to culturally competent and/or LGBT-specific bereavement programs for LGBT support networks (i.e., family of choice), recognizing the increased risk for disenfranchised grief.

    • Workforce
    • Systems
  • Address the increased risk of mental health problems and unique psychosocial barriers that exist for some LGBT cancer patients, and ensure that existing quality standards for pain and symptom management are met.

    • Workforce
    • Systems
  • Provide ongoing training to all hospice/palliative care providers and staff to ensure culturally competent care to LGBT patients and families of choice in all care settings (including hospice, long-term care, and skilled nursing facilities).

    • Workforce
    • Information
  • Address the complex spiritual needs of LGBT patients and families of choice with awareness of the fear and distrust of faith-based communities experienced by many LGBT communities. This includes respecting the choice of not wanting spiritual/pastoral care.

    • Workforce
    • Diversity
  • Ensure timely care coordination for LGBT patients including prompt referral to culturally competent palliative care providers soon after diagnosis to reduce distress, improve symptom management, and increase retention in treatment.

    • Systems
  • At the end-of-life, dignified death is a priority for LGBT patients. Unique topics such as continuation of hormone therapy for transgender patients as well as respect for patient choice of burial and death rituals need to be addressed.

    • Systems
    • Information
    • Diversity
  • Include psychosocial distress, suicide risk, financial planning, relationship with family of origin, and current families of choice when performing screening and intake of LGBT cancer patients.

    • Systems
    • Diversity
  • Discuss and formalize surrogate decision-making during initial patient encounter, including medical proxy documentation, formalization of custody of dependent children, and hospital visitation forms. Recognize that it is a patient’s legal right to include family of choice. These discussions must reflect rapidly changing laws, regulations, and accrediting standards at the national, state, and institutional levels. Advance directives and Physician Orders for Life Sustaining Treatment (POLST) should follow patients across multiple care settings.

    • Systems
    • Diversity
  • Public Health Department Recommendation:

    Support training for palliative care and hospice providers on LGBT cultural competence.

    • Workforce
    • Diversity
  • Public Health Department Recommendation:

    Eliminate barriers to access.

    • Systems
  • Public Health Department Recommendation:

    Support policies, systems change, research, and programs that increase the availability of culturally competent end-of-life and palliative care for the LGBT community.

    • Systems
    • Information
  • Public Health Department Recommendation:

    Support LGBT-tailored interventions and health promotion.

    • Information
    • Diversity

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