With continued advances in strategies to detect cancer early and treat it effectively the number of individuals living years beyond a cancer diagnosis is expected to continue to rise. In recent years, there has been a shift in how cancer survivorship is defined. The GCI, consistent with the Canadian Cancer Society, broadly defines survivorship as strategies to improve care and support from the time a woman receives her gynecologic cancer diagnosis until the time of her death or entry into end-of-life care.
The new and evolving paradigm of cancer survivorship research is one that comprehensively explores women’s survivorship experiences. Hence, our research priorities will be guided by the following principles:
This paradigm looks beyond treatment, representing a shift away from a medical deficit-dysfunction toward a multi-disciplinary and biopsychosocial approach which stresses the importance of understanding women’s experiences and listening to their voices to make more informed decisions
Cancer survivorship involves not only the cancer patient; caregivers and family are considered secondary survivors. Three phases of survival have been identified and these phases of survival are important vis-à-vis; an optimal transition into and management of survivorship. They are:
A large and growing community of cancer survivors is one of the major achievements of cancer research over the past three decades, and in part has been catalyzed by active involvement of survivor groups working alongside researchers. Both length and quality of survival are important end points. Many cancer survivors are at risk for and develop physiologic and psychosocial late and long-term effects of cancer treatment that may lead to a reduced quality of life or premature mortality. Unfortunately, to-date, there has been very little research on the issues they face and there is a dire need for strategies to help cancer survivors deal with the challenges. Interventions, both therapeutic and lifestyle changes, carry the potential to treat or ameliorate these effects and must be developed, examined and disseminated if we are to improve outcomes for cancer survivors.
I. Develop a Holistic Understanding of the Survivorship Needs of Gynecologic Cancer Patients
This research priority uses a patient-centric approach to explore the short- and long-term sequelae of women following their gynecologic cancer diagnosis and treatment. To ensure that the needs of all Canadian women are met, focus groups in multiple languages (e.g. English, French, Mandarin, Punjabi) will be conducted. The knowledge learned from focus groups will be synthesized and validated quantitatively through patient surveys. Participants will be invited for in-depth interviews to flesh out emerging trends from the quantitative survey.
The goal of this research is to gain a holistic understanding of the biologic, social and cultural survivorship needs of women.
We will also explore how gender characteristics, which can impact the hormonal milieu, influences the survivorship experience. The impact of sociocultural aspects of gender on survivorship are largely unexplored, as have the gynecologic cancer experiences of gender diverse individuals and together these both represent important areas of investigation.
II. Address the Psychosocial Needs of Gynecologic Cancer Survivors
Gynecologic (uterine, ovarian, cervical, vulvar, vaginal) cancer survivors identify distress as a major component of their cancer burden6. Stress, anxiety, mood/depressive symptoms, fatigue, fear of recurrence, and sexual difficulties (sexual dysfunction, low sexual desire and sexual distress) also contribute to their overall poor health. Those who are young, those who live in rural/geographically remote areas or those that have few socioeconomic supports are much less likely to have their distress symptoms addressed. We will embark on two complementary approaches to study how we may prevent or diminish psychosocial distress in gynecologic cancer survivors:
First Approach – Digital App-based support
We will develop Digital App-based support that has the potential to overcome barriers found with in-person program participation. The training programs and education in mindfulness and sexual health concerns delivered through the Digital App is one way of using technology to reach a larger audience by availing patients and families access to information they might not otherwise seek. Another use of technology is to assign a personalized cancer journey navigator as the diagnosed patient is going through her journey, including post treatment support.
Second Approach – A standardized model for follow up care clinics
Our second approach is the development of a standardized model for follow up care clinics. Currently the effectiveness of follow-up care clinics in preventing or ameliorating long-term effects of cancer and its treatment is inconsistent. This project will develop a standardized model of service delivery for cancer related follow-up care for application to be uniform across cancer centers and community oncology practices. The research team will assess the quality, content and optimal frequency of follow-up care for cancer survivors. This will be done in the community setting by oncologists or by primary care providers which will inform changes in practice to improve the burden of cancer.
III. Biopsychosocial Sexual Rehabilitation
Gynecologic cancers and their treatments result in significant and persistent sexual problems and distress among survivors and their partners.5 Given a lack of health care provider training, perceived embarrassment, the relative increased emphasis on survival, and limited access to care, sexual concerns are often left unaddressed in cancer clinics.
Sexual dysfunction, defined as a chronic and distressing disturbance in sexual response, affects an astonishing 75% of pelvic cancer survivors. It is reported by survivors to be the single most distressing post-cancer condition affecting their health-related quality of life. Sexual dysfunction manifests uniquely within each population, but consistently involves biologic, psychological and social elements. Ongoing and untreated sexual dysfunction is directly related to other chronic psychosocial entities such as depression, anxiety, body image disturbance, and poorer self-rated health.
There are also significant gaps in health care provider training. To address these concerns the GCI aims to close this critical gap in knowledge through firstly, identifying the sexual health requirements linked to gynecologic malignancies and secondly, developing personalized sexual rehabilitation programs of care inclusive of partners and sensitive to minorities and marginalized groups (e.g. rural, Indigenous, immigrants, LGBTQ+). The GCI will study how these programs improve sexual function and aim to increase accessibility in order to meet the needs of all cancer survivors.
In order to help facilitate access to care, this project will perform a needs assessment among survivors, their partners, and health care providers to determine barriers and enablers to sexual health care. Prior to testing the programs, the research team will establish resources and modes of care to address our current system’s deficits. Strategies such as e-health, digital health technologies, and other online resources will be utilized to ensure access to care is optimized, with particular attention to minorities and rural populations. While the team will incorporate research-based approaches to data collection and scoping reviews in the early phases of this work, their overall approach will be one of implementation science, so that findings can better inform implementation in clinical settings and promote Canada-wide uptake. Efficient referral and triaging processes will be established to ensure that patients and their partners are captured appropriately during their cancer journey, from their respective cancer clinics.
The GCI’s goal is to create the scaffold and infrastructure to facilitate wide-spread adoption of our program among all cancer centers across Canada and enable other leaders in sexual health to efficiently implement our developed sexual rehabilitation programs for all pelvic cancer survivors. The research will be undertaken by cross disciplinary experts from various cancer populations to facilitate the implementation of successful and sustainable programs through Canada-wide mentorship and creation of a standardized toolkit for health care providers.
This research project will develop an infrastructure for future innovation and further research to establish a Canada-wide sexual health survivorship working group inclusive to patients and partners, who will be favorably positioned to advance the field of sexual rehabilitation in cancer survivorship.
IV. Addressing Reproductive Health in Gynecologic Cancer Survivors
All gynecologic cancers and the subsequent treatments can impact the reproductive health of women, especially those in pre-menopause. The long-term fertility and menopause related side effects post detection and treatment including surgeries, could have both physical and psychosocial implications. This raises important questions regarding patient information needs and treatment decision making.9 Input from cancer patients will be sought on the prospect of infertility, methods of fertility preservation, anatomical changes, induced menopause and sexual disfunction and rehabilitation.
Currently data on cancer survivorship issues is sadly lacking. These studies will help to more clearly define these issues with evidence based consultation, and examine medical psychosocial outcomes of cancer diagnosis and treatment by survivors by filling in the gaps in knowledge and the use of emerging technologies.