Report

A community perspective: on Human Papillomavirus (HPV)-related cancer among women and trans and gender diverse people

Publisher
Bowel cancer Breast cancer Cervical cancer Human Papillomavirus HIV infections LGBTI Australia
Description

In 2016, Positive Life NSW conducted an anonymous online anal cancer awareness survey targeting women and trans and gender diverse PLHIV, and other HIV-negative women and, trans and gender diverse people across Australia. The survey received 355 responses from women and, trans and gender diverse people who were assigned female gender at birth. It aimed to assess whether these populations were equipped with enough information and strategies to prevent HPV-related cancer, detect HPV-related cancer early, and stay cancer free post-treatment and/or recovery.

Positive Life NSW also sought to understand and assess the experiences of respondents when accessing services to prevent, treat, and recover from HPV-related cancers, and to identify any potential health care access barriers.

Findings:

  1. The results from this survey highlighted a lack of awareness of risk, prevention, symptoms, and early detection of HPV-related vaginal, vulvar, and anal cancers.
  2. Approximately 28% of HIV-positive respondents were unaware that a vaccination against HPV exists and 71% of HIV-positive respondents had not been vaccinated against HPV.
  3. Over half (60%) of HIV-positive respondents believe their risk of anal cancer was either ‘about the same’, ‘lower’, or ‘much lower’ than the general female population’s risk.
  4. While all HIV-positive respondents had screened for cervical cancer at some point in their lives, 91.7% had never had an anal examination for anal cancer.
  5. Among HIV-positive and HIV-negative but immunocompromised respondents who had undergone staging or treatment for either cervical, vaginal, or vulvar cancer, none had ever screened for anal cancer.
  6. Of the HIV-positive respondents who do not receive screening reminder notifications, none were aware of the new 3 yearly National Cervical Screening Guidelines and changes.
  7. Qualitative responses indicated that respondents generally preferred having clinician-initiated conversations with female doctors or nurses who were non-judgemental,  non-dismissive, clear, and made them feel comfortable.
  8. In an open-ended short-answer question, more than 25% of qualitative respondents felt that more awareness and normalising talking about HPV in the public realm would help increase their chance of detecting HPV-related cancer early.

Implications:

The results of this survey have identified 7 key areas that warrant action:

  1. Raising awareness of HPV-related cancer risk and symptoms (cervical, vaginal, vulvar, and anal) among women and, trans and gender diverse people living with HIV, and immunocompromised women and, trans and gender diverse people;
  2. Increasing screening for anogenital HPV-related cancers and particularly anal cancer among women and, trans and gender diverse people living with HIV, and immunocompromised women and, trans and gender diverse people;
  3. Increasing vaccination rates among HIV-positive and immunocompromised women and, trans and gender diverse people;
  4. Increasing awareness of the new National Cervical Screening Guidelines;
  5. Increasing clinician awareness of the need for entire lower anogenital tract examinations among women and, trans and gender diverse people living with HIV, and immunocompromised women and, trans and gender diverse people;
  6. Increasing clinician-initiated discussion of HPV-related cancers; among women and, trans and gender diverse people living with HIV, and immunocompromised women and, trans and gender diverse people; and
  7. Increasing awareness of HPV-related cancers in the general public and sexual health for women (cis and trans), trans men and gender diverse people.
Publication Details
Access Rights Type:
open