By Thomas J. Pier, MSW, LCSW, OSW-C, CMF, and Marina Baroff, MPH, MA, FACHE
What if every woman with ovarian cancer had help setting a clear direction through the uncertain landscape of the diagnosis? Imagine these women having access to a knowledgeable, caring expert who understands them—their lives, disease and needs— a professionally trained guide standing at the ready to help shape a personally tailored plan to feel, function and live well with ovarian cancer. Steps Through OC is delivering precisely that support.
Each year in the U.S. 22,000 women are diagnosed with ovarian cancer (OC) and nearly 15,000 die from the disease (Foundation for Women’s Cancer, 2016). OC ranks fifth in cancer deaths among women in the U.S., accounting for more deaths that any other cancer of the female reproductive system. More than 200,000 survivors live with distressing, disruptive and often-devastating physical, emotional, psychological and social impacts (Ovarian Cancer Statistics, 2019). Both women and their caregivers frequently feel overwhelmed by the diagnosis, preoccupied with the prognosis and distressed by treatments and decision-making as well as demanding maintenance therapies and on-going surveillance.
While many initial concerns may be addressed through short-term, on-site social work and nurse navigator services, very often survivors and their family members need more support and guidance when confronting complex and enduring physical, psychological, social and spiritual needs. And because many women yearn for professional ovarian cancer-focused guidance and supportive counseling beyond what is offered by peer-based programs and general community support groups, Steps Through OC (STOC) was launched in late 2018. The yearlong pilot offers free, professionally staffed, virtual psychosocial support to fill in these gaps in the OC ecosystem.
An evidence-informed, professionally designed program of the Clearity Foundation, STOC aims to help women and their loved ones feel, function and live well when facing ovarian cancer. Over six months, STOC provides survivors or caregivers with 10 video conference or telephonic counseling sessions with mental health professionals serving as ovarian cancer counselors, combining counseling with curated education and resources. Through one-on-one support, STOC aspires to improve quality of life for survivors and caregivers measured by participant-reported outcomes on standardized Quality of Life assessment instruments.
To recruit participants, STOC implemented both traditional print and social media campaigns including press releases, a website, blogposts, podcasts, and presentations and exhibits at national professional meetings, including the AOSW conference in Tucson. To enroll, survivors and caregivers register online and complete an “OC Coordinates” needs assessment that prioritizes their most pressing concerns covering OC’s entire trajectory including the crisis of diagnosis, managing treatments and side effects, adjusting to survivorship, managing uncertainties and approaching end of life. Each participant is matched with a counselor who uses tailored psycho-oncology interventions to help manage mild to moderate distress.
In less than seven months, the participant recruitment rate greatly exceeded expectations. Two hundred individuals are now enrolled, underscoring the high demand for community-based psychosocial support. Monthly reports indicate that 90% are survivors and 10% are active caregivers such as spouses, partners or adult children. Nearly 50% are in the recurrence phase and more than 64% are between the ages of 50-69. Program participants reside in 40 states with the largest numbers in California, Colorado, Texas and Florida; 40% found the program through social media and Internet searches.
To assess interim progress, a mid-term satisfaction survey (Institute of Public Health, 2019) was emailed to participants, yielding a high 80% response rate with 86% of respondents indicating they were extremely satisfied with the program. Sample comments included:
- “This is a superb, well-organized program that has provided much needed professional support to me as I go through this journey. So helpful to have someone so well versed in both OC and counseling.”
- “This program has been a godsend. Plus the fact that I don’t have additional financial burdens with receiving such helpful [support] is a miracle. Clearly much of being sick costs far too much both literally and figuratively.”
- “It has been a huge help to speak to someone who is knowledgeable about what my mother is going through as a patient and the stress of being a caregiver. Thank you so much for this service.”
- “I love the fact that I have a safe place to discuss my daily life. Struggles with a broken heart, codependent issues with my family and side effects from chemo were all things affecting me and there was great feedback and helpful hints shared.”
In addition to gathering mid-term feedback from participants, program leaders recently collected input from our team of OC counselors, all of whom are mental health professionals including certified oncology social workers. Designed as a brief telephone survey, this appraisal was fashioned to consider the “voice of the internal customer” to help identify both program strengths and opportunities for improvement. From the counselors’ perspective, several of the program advantages cited were:
- Helps normalize roller coaster of emotions and offers a connection to reclaim old self.
- Meets needs in a unique, creative, flexible and adaptive manner.
- Offers individualized support to women who are otherwise without access to services.
- Videoconferencing creates close ties, offering views of home environment and other life stressors.
Relative to possible enhancements, counselors shared numerous useful suggestions:
- Strengthen value proposition to both healthcare professionals and participants by reframing ‘free’ service as support paid for or donated by others.
- Target outreach to enroll participants in underserved communities.
In large measure, the team summed up their experiences by avowing that it is a “wonderful gift and honor to serve as an OC Counselor” in such “a meaningful, dynamic and engaging program,” one that has “successfully translated design principles into clinical practice.”
To guide continued development, dissemination and financial support of the program, the Clearity Foundation also contracted with the Institute of Public Health, San Diego State University, to conduct a formal independent outcomes evaluation of the STOC pilot. The evaluation assesses the impact of this psychosocial support intervention using quantitative aggregate information drawn from five assessment tools administered electronically through a secure technology platform at baseline, three- and six-month timepoints: Symptom Severity (MD Anderson Symptom Inventory), Quality of Life (Functional Assessment of Cancer Treatment), Self-Advocacy (Female Self-Advocacy in Cancer Survivorship Scale), Perceived Stress (Perceived Stress Scale), and Coping (Brief Cope). Results from this evaluation will be available in fall 2019.
In the meantime, as STOC completes its pilot year, there will be many lessons learned to share with clinicians, educators and researchers on 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, efficacy data and recommendations for future research.
For more information, refer to our STOC website at www.stepsthrough.org or call the toll-free number at +1-866-830-5134.
This article was published by AOSW.