Background: Each year 22,000 women are diagnosed with ovarian cancer (OC), over 15,000 die, and more than 200,000 live with the often devastating physical, emotional, and social impacts. Both the women and their caregivers feel overwhelmed by the diagnosis, prognosis, and decision-making process for treatment and follow-up during their OC experience. While some initial concerns may be addressed through limited short-term nurse navigator and social work services, very often survivors and their families are left to their own devices when confronting more complex and enduring physical, psychological, social, and spiritual needs related to cancer. Because many women yearn for professional cancer-focused guidance and supportive counseling beyond what is offered by peer-based programs and support groups, Steps Through OC (STOC) was launched in late 2018 to pilot free, online professionally staffed psychosocial support to fill this gap in the OC ecosystem.
Objective: An evidence-based program of The Clearity Foundation (TCF), STOC aims to revolutionize the OC experience by helping women and their loved ones feel, function, and live well. STOC offers 10 telephone/video conference counseling sessions provided over 6 months by mental health professionals serving as ovarian cancer counselors, combined with curated education. Through one-on-one support, STOC aspires to improve quality of life for a minimum of 100 survivors and caregivers by the end of September 2019, as documented by patient-reported outcomes on standardized pre- and postprogram assessments for perceived stress, coping, female self-advocacy, well-being, and symptom/side effect burden.
Methods: To conduct an independent evaluation of the STOC pilot, TCF contracted with the Institute for Public Health, San Diego State University. The evaluation assesses the impact of the psychosocial support intervention using both quantitative aggregate information drawn from 5 assessment tools (MD Anderson Symptom Inventory, Functional Assessment of Cancer Treatment, Female Self-Advocacy in Cancer Survivorship Scale, Perceived Stress Scale, and Brief Cope) administered at 3 time points, as well as qualitative information from participant satisfaction surveys. The results from this evaluation will inform sustainability plans as well as position topics for future study.
Results: With program enrollment levels currently at 200 participants in less than 7 months, STOC is experiencing a high demand for service. Process measures indicate that 90% of participants are survivors, and 10% are active caregivers, such as spouses or adult children. Nearly 50% of the survivors are in recurrence in their cancer experience, and more than 64% are between the ages of 50 and 69 years. Program participants reside in 40 states, with the largest numbers from California, Colorado, Texas, and Florida. An e-mailed Mid-Term Satisfaction survey yielded an 80% response rate, with 86% of respondents indicating that they were extremely satisfied with the program. Outcome results from the 5 psychometric assessments will be forthcoming in September 2019.
Conclusion: As STOC completes its pilot year, there are many lessons to share with clinicians, educators, and researchers. Chief among these are program adjustments to transition from pilot to integration; scaling plans to serve larger numbers of participants; experiences in promoting collaboration across the ovarian cancer space; and recommendations for initiating follow-on internal review board–approved research.
Sources
- CancerCare. Patient Access and Engagement Report. New York: Cancer Care; 2016.
- Expert Resources: Susan Hess, MA, Professional Counselor, Colorado; Bonnie McGregor, PhD, Clinical Psychologist, Washington.
- Hawkins RP, Pingree S, van Bogaert D, et al. The impact of combining human and online supportive resources for prostate cancer patients. Journal of Community and Supportive Oncology. 2017;15(6):e321-e329.
- Kinner EM, Armer JS, McGregor BA, et al. Internet-based group intervention for ovarian cancer survivors: feasibility and preliminary results. JMIR Cancer. 2018;4:e1.
- Richards SE. A Rising Trend in Cancer Care Targets Physical, Existential Threats Patients Confront. The Washington Post. May 6, 2019.
