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Ovarian CancerSurvivorship

Listen to the Voices of Cancer Survivors

Annette McElhiney, PhD, notes the psychosocial needs of patients with cancer, survivors, and caregivers. As an ovarian cancer survivor, she describes the help provided by the recently launched “Steps Through Ovarian Cancer” program.
October 2020 Vol 6 No 5
Annette Bennington McElhiney, PhD
Carlsbad, California

As an 11-year ovarian stage III-C cancer survivor who was given a 25% to 30% chance of living 5 years, I have often felt that our voices as survivors go unheard. But I’ve changed my mind as I write about a much-needed ovarian cancer support program launched in 2018.

Ovarian Cancer Foundations and Groups

In the summer of 2014, Susan Poorman Blackie died from ovarian cancer. Susan’s son Buck Dodson became interested in how to address the underserved psychosocial needs of ovarian cancer patients and families. Buck began working with Greenhouse: The Center of Social Innovation out of Los Angeles, and they started the “Ovarian Cancer Project,” sending representatives to several states, including Colorado, where I lived during the summers.

The goal was to facilitate focus group sessions for ovarian cancer survivors, asking what they didn’t get during their diagnosis, treatment, and survivorship, and what they needed the most. The focus group I attended in Colorado was hosted by the Colorado Ovarian Cancer Alliance.

Buck Dodson listened to the survivors in these focus groups, and, to use a cliché, “put his money where his mouth is.” In 2017, he started working with The Clearity Foundation to develop the “Steps Through Ovarian Cancer” (https://stepsthrough.org) program, or STOC, which launched in fall 2018.

The Clearity Foundation is a science-based, non-profit ovarian cancer organization that I worked with in 2010 to obtain a tumor profile to assist in determining my treatment options, and for whom I now advocate.

Steps Through OC: TranSforming Ovarian Cancer Care

According to a publication from the Association of Oncology Social Work Navigator, every year, about 22,000 women are diagnosed with ovarian cancer and 15,000 women die of the disease.1

According to an article published in August 2019 online by the Association of Oncology Social Work Navigator Newsletter, the STOC program is an evidence-based, professionally designed program of The Clearity Foundation that “aims to transform the ovarian cancer experience by helping women and their loved ones feel, function and live well when facing ovarian cancer. Over 6 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.”1

The STOC program has recruited participants by using print and social media, press releases, presentations at appropriate professional programs, websites, and podcasts, all of which serve to introduce the STOC program to ovarian cancer survivors.

Interested participants complete an online needs assessment that prioritizes concerns related to diagnosis, treatment, living with the uncertainties of cancer, and coping with personal experiences related to doctors and family.

After the needs assessment is evaluated by the clinical team, each participant is matched with an ovarian cancer counselor who meets with them 10 times over the course of 6 months, using emotional and psychological tools to address their individual problems and concerns.

Exceeding Expectations

The newsletter article highlights the benefits of the pilot STOC program. “In less than seven months, the participant recruitment rate greatly exceeded expectations. Two hundred individuals are now enrolled, underscoring high demand for community-based psychosocial support. Monthly reports indicate that 90% of participants are survivors and 10% are active caregivers such as spouses, partners or adult children. Nearly 50% of survivors are in the recurrence... 40% found the program through social media and internet search.”1

To ensure continuous improvement of the program, several surveys are used to evaluate participants’ satisfaction with the program. Initial survey results showed that 80% of participants responded to the survey, and 86% of them indicated that they were extremely satisfied with the program. Below are a few example of their responses1:

  • “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.”

As part of the STOC pilot program, The Clearity Foundation contracted with the Institute of Public Health at San Diego State University to conduct a formal independent evaluation of the program, by measuring patients’ self-advocacy, emotional well-being, perceived stress, coping mechanisms, and symptom and side-effect burden.

The 2020 results of this program evaluation show significant improvements in the areas of patients’ coping, emotional well-being, functional well-being, stress reduction, and overall quality of life.2

Specifically, the final survey results showed that 97% of the patients reported being extremely satisfied, or overall satisfied, with Steps Through OC, and 96% of them strongly agreed, or agreed, that their counselors provided personal assistance.3

In addition, to complement this external evaluation, STOC leaders also conducted an internal telephone survey with the mental health professionals who are serving as ovarian cancer counselors in the program, many of whom have backgrounds as certified oncology social workers. STOC asked the counselors to provide their perspective on what are some of the strengths of the program.

Supporting Survivors and Caregivers

Here are some of the advantages the mental health professionals thought the program offered to survivors and caregivers1:

  • “Helps normalize roller-coaster of emotions and offers a connection to re-claim old self.”
  • “Meets needs in a unique, creative, flexible and adaptive manner.”
  • “Offers individualized support to women who are otherwise without access to services.”
  • “Video conferencing creates close ties, offering view of home environment and other life stressors.”

From the perspective of ovarian cancer survivors, the diagnosis and treatment for the physical aspects of ovarian cancer have moved forward very slowly. However, we feel that addressing the informational, emotional, and psychological needs of survivors has lagged even further behind. However, as a fortunate long-term survivor, the development and progress of the Steps Through OC program gives me hope.

Buck Dodson listened to the voices of ovarian cancer survivors and worked with The Clearity Foundation to develop the STOC program. I hope that other ovarian cancer survivors across the country will take advantage of this program, which could make the management of ovarian cancer, if not easier, at least more tolerable.

References

  1. Pier TJ. Steps Through OC: Early Findings from a National Pilot Delivering Virtual, Individualized Psychosocial Support to Ovarian Cancer Survivors and Caregivers. AOSW Navigator. August 1, 2019. https://sherwood-aosw.informz.net/admin31/content/template.asp?sid=64989&ptid=2314&brandid=4744&uid=1053235221&mi=8766507&ps=64989.
  2. The Institute for Public Health, San Diego State University School of Public Health. Steps through OC: an outcomes evaluation. May 2020. https://files.constantcontact.com/58510deb001/05a0eee9-dc59-4361-a1aa-e761c01971d4.pdf.
  3. The Institute for Public Health, San Diego State University School of Public Health. Steps through OC: an evaluation of participant satisfaction. April 2020. https://files.constantcontact.com/58510deb001/3d3c92b6-2401-46b3-9146-f1f3ff5f4dbe.pdf.

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