Rekindle Sexuality After Cancer: Development and Testing of a Novel Web-Based Psychoeducational Resource for Both Survivors and Their Partners

Contact Name: 
Catalina Lawsin
Name of Institution, Organization or Community Where the Project Was Implemented: 
The study is being done in Australia in collaboration with the Cancer Council New South Wales.
Description of Project Setting: 

The module is available online.

Category: 
Survivorship
Subcategory: 
Quality of Life
Target Population: 
Adult
Cancer Site: 
Non-Specific
Breast
Cervical
Colorectal
Endometrial
Kidney
Leukemia (All Types)
Liver
Lung
Melanoma
Non-Hodgkin Lymphoma
Other
Ovarian
Pancreatic
Prostate
Thyroid
Project Description: 

Sexual concerns after cancer are common, for both patients and their partners. Rekindle is a research-driven, self-led, private web-based educational resource that addresses sexual concerns related to cancer survivorship, across all cancer-types. There are 12 different versions of the intervention that vary with respect to user characteristics, such as side effects experienced, women vs. men, and patients vs. partners. “Ambassadors” representing different user populations provide patient testimonials and are matched to each intervention. Rekindle’s teaching modules are tailored to users’ specific area of sexual concern or unmet need. Additional modules are available at the end of the intervention for users who would like extra support. Rekindle supports cancer survivors and their partners, while also aiming to change the culture surrounding how we talk about sexual concerns related to survivorship.
Rekindle is currently being evaluated in a three-armed randomized control trial. The first group uses the intervention on its own. The second group uses the intervention plus telephone support. The third group doesn’t have any support beyond resources found on the Internet. Approximately 350 Australians have enrolled in the trial, from rural and urban areas. This demand speaks to the prevalence of sexual concerns and how much users want support. It also highlights the lack of existing support mechanisms to address sexual concerns. Results will be forthcoming.

Problem or Issue the Project Was Designed to Address or Improve: 

Rekindle is a research-driven, self-led, private web-based educational resource that addresses sexual concerns related to cancer survivorship, across all cancer-types.

Project Significance: 
Existing research documents what helps survivors address sexual concerns. This research responds to a gap in understanding the best way of getting support to survivors: how best to teach these strategies using a self-management model, so that patients can do this on their own. Many patients don’t know whom to talk to or where to get support for psychosocial concerns. They learn about things in many different ways, not just through their clinic. The majority of study recruitment has come from media, in particular the radio, internet and social media. This demonstrates the importance of providing patient information about supportive care through a variety of pathways.
Lessons Learned for Patients, Caregivers and/or Communities: 
Initial results suggest the feasibility and appropriateness of using web-based resources to provide people with support in the privacy of their own home, as well as the plausibility of breaking down barriers to addressing sexual concerns after cancer.
Lessons Learned for Clinicians or Health Care Professionals: 
Providers should ask patients about cancer-related sexual concerns, and be prepared to refer patients to resources to address them. One of the biggest barriers to patients not getting the support they need regarding sexual concerns is that providers don’t ask them about it.
Lessons Learned for Researchers or Additional Research Needed: 
Future research can determine the need and appropriateness of adapting interventions based on social and cultural factors when addressing cancer-related sexual concerns among specific populations--for example Latina cancer survivors. Research should identify ways to tailor interventions. Research should also address how to help providers ask survivors about cancer-related sexual concern. Studies can determine how to best train clinicians to provide comprehensive sexual health assessments among cancer survivors, including but not limited to routine check-ups. More research is also needed to determine how to increase cancer-related sexual competency among OB/GYNs, gynecologist oncologists and primary care providers to heighten competency in this area.
Additional Information: 
The study uses a multipronged approach for recruitment, drawing heavily on public relations efforts of the Cancer Council including in-person and social media, radio and television interviews, conference presentations and outreach in about 32 Australian cancer clinics. Several cancer survivors serve on the study’s community advisory board. They gave input from the patient’s perspective throughout the development and design of Rekindle, and on study implementation including recruitment strategies.