All of Me: Prioritizing Sexual Health for Iowans Impacted by Cancer
By: Erin Sullivan Wagner, Cancer Survivor
In 2016, After Cancer, Solutions for Sexual Health, received a grant for a project called “All of Me: Prioritizing Sexual Health in Iowans Impacted by Cancer,” funded through the Iowa Cancer Consortium and Iowa Department of Public Health. In short, the project’s goal is to develop and implement self-sustaining education programs, along with a public awareness campaign for oncology care providers. We aim to improve quality of life, sexual health agency, and sexual health for Iowans impacted by cancer. Thus, the primary target audience includes advance practice professionals, oncology nurses, social workers, and physical and mental health therapists.
Phase 1: 2016-2019
The first phase of this project took place between 2016 and 2019:
- Conducted focus groups with 50 participants, created a public awareness video
- Developed project website, www.AllOfMeIowa.org
- Delivered on-site provider workshops at nine Iowa oncology clinics
- Developed educational materials, including: detailed implementation framework, provider-patient role play scenarios, and evidence-based presentations
- Hosted two conferences that generated content for the project website
Target group requested we add new content to www.AllofMeIowa.org. As a result, one of the tools we added was a patient brochure about sexual health and cancer available in English and Spanish, which can be downloaded from the project website.
Here’s some feedback from our initial phase:
- Great to involve audience. Great to discuss issues with gender. I really admire your phrasing and will try to incorporate it. Enjoyed the idea of what is important to bring up and consent to do it.
- Invite PCPs (primary care providers) who don’t know how to deal with past oncology sex issues
- Always appreciate Erin’s openness and honesty about her experience – she inspires us all to have those difficult conversations.
Phase 2: 2019-2020
Project goals for FY2020 include hosting a statewide conference on topics related to Sexual Health and Cancer. Due to the COVID-19 pandemic, we could not hold the conference on May 8, 2020, as originally planned. We are rescheduling the conference as a live-streamed event.
The May 8th conference agenda is attached here. The live-stream event, ideally, will follow the same schedule. The original agenda was approved for 7.5 nursing contact hour credits through the University of Iowa School of Nursing. So, we are working with the UI School of Nursing to offer the same number of nursing credits. Additionally, the new conference will be free to attend and its new date announced by end of June 2020.
A Pilot Study
Fortunately, patients impacted by cancer are living longer. As a result, post-treatment quality of life, including sexual health, is becoming increasingly important. For example, evidence-based national guidance for sexual health care in oncology was first published by the National Comprehensive Cancer Network (NCCN) in 2013 and updated in 2017.
The American Society of Clinical Oncology (ASCO) published its guidelines in 2018. ASCO recommends a team member initiate the conversation about sexual health and cancer as soon as possible after diagnosis. Following this recommendation, anticipated sexual health side effects of various treatment options are more likely to then be considered when treatment decisions are made. It also empowers the patient to maintain agency over their sexual health. Particularly when sexual side effects of cancer or its treatment are likely or may be long-lasting.
The study is the culmination of four years of educational activity seeking to prioritize sexual health for Iowan’s impacted by cancer.
Its goal is to learn as much as we can about how to implement sexual health care for Iowan’s impacted by cancer. Because cancer care is provided in a range of settings across the state, three diverse sites will participate: University of Iowa Urology Clinic, University of Iowa Gynecology Oncology Clinic, and St. Anthony’s Regional Hospital in Carroll, Iowa. Next, we will design a statewide roll out for implementation of sexual health care using study results. Specifically, we will be testing the acceptability and effectiveness (in terms of confidence in providing various aspects of sexual health care) of an implementation plan, tracking and responding to all team member questions, problems, and suggestions.
In clinics or centers with Advanced Practice Professionals (APPs, including ARNPs and PAs), APPs usually provide sexual health care. However, in other clinics or centers, this care may be provided by MDs or DOs. The All of Me project has focused on educational materials, conferences, workshops, and a website for oncology nurses, APPs, social workers, physical therapist, radiation therapists, and Mental Health Therapists. Therefore, we encourage all team members – including Medical Assistants, MDs, and DOs – to access the All of Me resources during the study.
Making Sexual Health Care in Oncology a Standard
We began this project with the aim of providing a training tool for our target audience of health care professionals. Further, we wanted to normalize the sexual health conversation. We also wanted to set appropriate patient expectations regarding their cancer or its treatment on their sexual health. Finally, we wanted timely referring of patients out to other health care professional when necessary.
FY2020 objectives aim to change oncology practice in Iowa through a statewide implementation plan and adoption of sexual health care in oncology as a standard of care. This will eventually allow roll out of a statewide Implementation Plan based on the best Iowa-specific provider and patient information and translational methodology.
Adoption of the plan will be incentivized through our continued efforts, which include:
- Sharing the All of Me vision through the statewide conference
- Providing ongoing leadership and implementation troubleshooting through quarterly conference calls
- Growing nursing and physician leadership support through direct outreach and inclusion
Please visit www.AllofMeIowa.org for additional information on this project.