Program guides ovarian cancer patients, caregivers in ‘Steps Through’ diagnosis
After seven years of advocating for the improvement of the survival and quality of life for women diagnosed with ovarian
The two nonprofit organizations in November launched a pilot program called Steps Through Ovarian Cancer (OC), which provides free access to professional counseling, education, resources and other forms of support for women going through ovarian cancer and anyone around them who may be affected by their diagnosis.
Hillary Theakston, executive director of the San Diego-based Clearity Foundation, recently discussed this new venture, its goals and how it works.
Q: What inspired the Clearity Foundation and the SPB foundation to launch Steps Through OC?
A: It was a bit of a serendipitous alignment in our efforts to understand what the unmet needs were in the ovarian cancer community. At the time, Clearity had been in existence for about seven years and had been helping women to test their tumors. The SPB Foundation had been around about three years and had made some interesting science-based grants and supported Clearity very generously, but then decided to make it a strategic decision that they wanted to concentrate their investment in understanding where there were unmet needs that remained with patients and their families. They started a grassroots market research effort to understand what went wrong on the ovarian cancer journey and where patients and families struggled the most.
We really came to understand the journey in, I think, one really consistent and important way. That is that patients and families oftentimes struggle, not to access information — because there's a wealth of information online, as anyone who's searched for a health condition knows — but figuring out what information you can trust and what is relevant given their clinical situation is really a different challenge and something that folks struggle with. They also don't always know what information can be helpful to them at a particular time. The challenge to get proactive, credible and trustworthy information is a very prominent feature that Clearity came to appreciate in our work and that SPB really came to understand in their market research efforts. That was really a shared observation that led to the launch of this.
Q: How is each participant matched with a counselor?
A: What we do is have the participant complete what we call an OC Coordinates Survey, which helps us to identify among many issues that tend to come up on the ovarian cancer journey and what the participant is struggling with at a particular moment in time. We have a little bit of a map and an orientation as to what issues are being grappled with and will need to be tackled first. We have about seven part-time counselors, and we'll make a match on that basis. Sometimes it really relates to practical issues like what time zone they're in. We have some male counselors and some participants have indicated a preference for female counselors. It's sometimes just logistical and practical issues, and then other times it has to do with the issues that they're confronting and what they happen to be needing support with at a given time.
Q: What are the counseling sessions like and how often are they held?
A: They're by video conference or by phone, depending on what the participant would prefer. It starts out as weekly counseling sessions and is really based on the needs or concerns that the participant identifies as part of that OC Coordinates survey. Then, our outbound counseling drops to every other week and then to monthly. If the participant indicates they'd still prefer to maintain weekly touch-points, we accommodate that in the program. This is just what we expect will be the desired frequency of counseling sessions. That program goes for six months, and if participants want to continue past that, that's an option. If participants want to stop counseling and come back, in the event that they need it, that's available, too. We really try to be flexible and responsive to what folks are needing at any given time.
Q: Are there any requirements to participate other than going through ovarian cancer or knowing someone going through it?
A: We're just national right now, so we don't really have international capabilities. We have staffing with a goal to support about 150 participants over this 12-month pilot period. We've already recruited 81 participants [since November]. We've really gotten a very positive response to it, and we're working to add additional counselors. We hope to support even more participants than our original 150 that we contemplated as part of the pilot.
Q: Why do you find this type of service to be beneficial for the caregivers and family members?
A: Ovarian cancer is a really devastating diagnosis. It's one of the cancer indications where we haven't seen nearly as much progress as we'd like to or even as we've seen in other kinds of cancer. There's a really high risk of recurrence; most women are diagnosed in late-stage and, for those, they have about a 75 percent chance of recurring. The 10-year survival rate is just about at a third. This is a pretty daunting diagnosis, and it affects the whole family. The surgery can be difficult to recover from. Chemotherapy can be challenging for some patients to manage. It really has pretty wide-ranging effects to the woman who's being treated, her physical health and her emotional health. The stress and anxiety that can come with this diagnosis can be difficult, and that can ripple through the whole family. Children and spouses can also feel that stress. ... We really think there's a lot of need to support the folks who are supporting the patient, ultimately, to help them manage their stress levels to stay healthy physically and to manage the ripple effect that this diagnosis can introduce into people's lives.
Q: How have you seen people be affected by your support?
A: What we've found is that patients and their families have a huge sense of relief when they connect with Clearity. They feel they have someone who is with them for as long as they need them to be and that they can speak honestly about their concerns and needs. They can trust the information that we provide because it's based on science, and we really don't have any restrictions or limitations. We don't worry about reimbursement or whatever kinds of policies might exist at any given treatment institution. Our sole aim is to help that patient or that family member have the best possible outcome that they can. We take the time to learn what's important to them. It's not just a matter of what the science says, but it's bringing into the picture, here's what your individual clinical situation is, here's what your priorities are, here's what your concerns and needs are, and here's how this science can support your treatment through that. Participants tell us they finally feel they have a source of hope that they can trust and someone who knows what they're going through.
We've heard that at Clearity — and we're hearing that through these Steps Through Ovarian Cancer counselors — that there's really some magic in combining someone who is trained as a counselor or therapist but has a really detailed and intimate knowledge of the ovarian cancer experience. That's a really powerful combination, and it's not something that really exists in the patient advocacy community currently. We're excited there appears to be a real, definite need for this and that we're able to meet that need.
Q: Why has this mission been so important to you?
A: Both of my maternal grandparents died of cancer at a fairly young age. My grandmother died in her early 60s, and it was ultimately diagnosed as colon cancer, but we think that the primary cancer might have been gynecological cancer that had metastasized. I think most of us have been touched by someone who has struggled with this diagnosis. It was just always something that was important to me that I had a very personal appreciation for how difficult it can be and for the struggle that families go through. We lose far too many women early and they leave holes in their communities and families. It's just something that has been a passion of mine for a long time.
For more information, visit stepsthrough.org.