Overall, 28 people participated in the interviews including 8 former participants and 20 program staff from 8 states. Of the program staff, 14 were program directors responsible for overseeing the programs recruitment and enrollment. The 6 program instructors were primarily involved in exercise programming and session planning, though also contributed to the recruitment and enrollment efforts. Program staff were from 8 states (Connecticut, Indiana, Maine, Massachusetts, New York, Oregon, Texas and Wisconsin). Eighty percent (n = 16) were female and had worked with the YMCA for a mean of 4.75 (2.34) years (see Table 1). Survivors were from 3 states (Indiana, Massachusetts and Wisconsin), 62.5% were female and were recent program participants (1.44 ± 0.77 years since they participated in the program). Fifty percent of survivors heard about LIVESTRONG from their cancer care provider, 4% from family/friends and 4% from a cancer support group.
For program staff interviews, 4 themes emerged: 1) Program awareness should be further developed for both the general public and medical providers; 2) Strong relationships with medical providers increased program referrals; 3) Electronic referral systems between providers and LIVESTRONG would help to streamline the referral process; and 4) Bi-directional communication between program staff and medical providers is key to providing patient progress updates.
Another program director concurred:
I think a lot of it is just building that awareness that the program exists, because there are plenty of people that could take advantage of it in our area within the seven counties that we serve, but the word really isn’t out there, and I think that’s what I need to do.
Strong relationships with medical providers increased survivor referrals.
Many staff reported that they had relationships with some medical providers in their area to help facilitate referrals. These included a number of providers, including oncology, primary care, and nurse navigators. One staff member noted:
So we send them (oncologists, primary care) the information, and then a lot of it is people that are still in treatment go back and talk to their oncologists how great this program has been for them, and then the oncologist sees that and really starts speaking toward it. So we have a lot of support in that sense as well.
Another staff member agreed:
We work with some nurse navigators, and actually it’s been kinda nice, because the nurse navigator that sends us the most referrals has went through our program as well. So she’s a huge advocate for our program. We have an oncologist in the area that is a huge advocate for our program as well and tells all of her patients about it. And then a cancer service center in the area puts our information and our class list, upcoming class list, in their newsletter every month. So, that’s been helpful as well.
A few program directors spoke to their efforts to educate providers, including educational sessions and visiting sites/sessions to view what participants do in the program.
it’s word of mouth, doctors, the ones that we do have that connection with our program. We have a signature event in November at our hospital – and those’re a lotta the oncology doctors. So they’ll do referrals, but it’s not all doctors definitely know about it.
Another program director concurred:
I’ve talked to nurse navigators, and I asked, “Why don’t you push or program?” Come and see what it is I want you to push for your patients. If you wanna go through the entire intake process, I will take you through that so that you know what they can expect. If you wanna see a class who’s running, come and play with us. Bring some tennis shoes. Come work out with us. Come watch us from the doorway, whatever it is you wanna do, talk to our participants, anything.
Electronic referral systems between providers and LIVESTRONG would help to streamline the referral process.
Several participants reported that using an electronic referral system would save time and provide ease for providers to refer patients to programs:
If we could do doctor referrals online... There’s just a link for them to go do all this, that’s – saves a lotta time on our end.
I know we’ve even looked into a system which connects doctors and patients to different programs, depending on their condition, what outcome they’re looking for and their location. So, we haven’t really progressed as far as how we can apply it. But the intention is to find some way using technology to make this process easier and really value the time that we have.
I think maybe the patient portal would be awesome or, a mass e-mail from the hospital –I’ve noticed is if it comes from their medical staff… they are more likely to try it, to sign up for it.
One program director noted the importance of being able to include personalized feedback on the patient’s status into the referral form.
Having an electronic referral system, where I could get a little popup window that somebody’s been referred through a secure network, here’s a medical release and the contact information. If I get medical releases without any sort of information about a patient…I really value that intake to see if this is the right fit for them at that time.
One program reported hearing of others using an electronic referral system for providers to directly refer patients to the program:
Some of them (doctor’s) are starting to send an actual medical referral over to us saying that they told somebody that they need to be in this program.… I know some other Y’s actually did that in an electronic referral system. Their doctors or their cancer center made them a referral option, and they send referrals that way to them.
Bi-directional feedback between program staff and medical providers is key to providing patient progress updates.
Program Directors reported wanting to provide feedback to providers in real-time, using an electronic platform in an ideal referral scenario:
…thinking about some kind of platform, too, that really allowed a provider to see what their patient is doing, kinda almost in real time, some kind of electronic system so that it doesn’t have to be this fax and call and things of that nature...
Some Program Directors reported having success using a system to provide feedback to their participants’ providers:
… we also give them (oncologists) a feedback report as well. We created a generalized feedback report, which says, “Your patient, date of birth, enrolled or completed in X program on this date,” or, “Program was unable to participate. Participant dropped out,” … so that the oncologist or the physician or whoever knows where the patient ended up and have that feedback report from us
Another program director suggested increased communication led to greater referrals:
…one of the things that we incorporated that was really beneficial…when our referrals started to take off is we created a report pre- and post-assessment of the fitness-assessment data. And we faxed it to the doctors with the participants’ permission. That’s when we really started to see doctors referring.
For survivors, 3 themes emerged: 1) Survivors trust their medical team and the information they provide about physical activity; 2) Providers need to incorporate an action plan and referrals for survivors to be active once treatments are completed; and 3) Personal experiences of those who participated in LIVESTRONG resonate with survivors and increase participation.
Survivor interview data
Survivors trust their medical team and the information they provide about physical activity.
Half of the survivors interviewed heard about the program through a medical provider. Many credited their medical team and providers for decisions made throughout their treatment. They emphasized how important their providers were and the magnitude of the information they would relay to them:
Well, certainly hearing from it from my medical team that everybody – I assume everybody pays close attention to their medical team, especially when you get a diagnosis of cancer. It’s serious. So you listen to ‘em. You pay attention to them.
Another survivor noted providers are best-suited to make referrals:
I believe that people, docs, nurses, PCAs in the clinic should be made aware of it, maybe even a little seminar or something, “Hey, this is available to your patients. Please, when you’re speaking to them, mention it to them. Give ‘em a brochure.” It’s a matter of getting the word to people. Some of your people in cancer treatments got enough on their mind to think about some other thing, but if somebody presented to them, then certainly that’s gonna help
Survivors who didn’t hear about it from their medical provider felt that it would’ve been helpful to get a referral from them:
It might’ve been helpful to have been handed something from either the doctor, the oncologist, or the hospital shrink they made me go talk to. – I spent a lotta time online.. a lot of the cancer links bring you to the LIVESTRONG organization. And nowhere did I see something (about LIVESTRONG at the Y)…..It must be overwhelming to people to be told, “We’ve gotten rid of the cancer, but it might come back, but now you need to get yourself in shape,” and not really understand what that all involves, the life changes that that all involves.
Providers need to incorporate an action plan and referrals for survivors to be active once treatments are completed.
Most survivors reported wanting to hear about programs available to them when they completed their treatment. They mentioned the timing of after completing treatment or after a transplant as being the opportune time for medical providers to intervene.
I can only speak for myself from a transplant standpoint… the doctor, the PCA, the nurse, somebody from pharmacy, they come into your room to get you ready to leave and go home. Well, it’s part of that whole discharge process. Shouldn’t that be in there about LIVESTRONG?
Another survivor concurred about their last appointment at their clinic:
…it was an exit appointment almost, not quite an exit interview, but I think about it similarly like a survivor, “Here’s your next steps after you’ve gone through surgery….This is offered to you.” So at (name) clinic it was a nurse, and then it was – at my local cancer center – I believe she’s also a nurse, but it was a survivorship appointment, where we reviewed my diagnosis and the treatment that I had, and moving forward, what’re my next steps, and then also here’s a program that’s offered for you.
One participant noted that she would like it to come from her primary care doctor, as her final visit with her oncologist was not helpful.
I think probably primary care would be the best and that’s a person that you probably pretty much would trust or at least give credence to it and know if the next time you see them they’re gonna ask you, “Did you do that? Did you think about there’s gonna be a follow-up?” whereas, that oncologist, they’re not gonna follow up on that.(Name) clinic goes through this. It’s sort of a perfunctory final visit, and I have to tell you – it was so unimpressive. I can’t even tell you what they covered, but it was this long interview. I don’t know what was the purpose. I think it was for collecting data, not for really helping people…and it was boring and useless.
They also wanted to know from their provider if they were physical ready and able to complete a program like LIVESTRONG, not knowing exactly what it entailed.
I would think that if there was some sort of contact made through your medical group…When you’re at the point when you begin to say, “How am I gonna recover from this? How am I gonna get back to normal physically?” is when it would be helpful to have someone have a routine call to say, “We have this available.”…I guess that you’d have to do it through your doc, because how would the Y know that you were a candidate?
Another survivor concurred about how it would’ve been easier to be referred to LIVESTONG:
The thing that would’ve made it easier was what we would do and what the program was – how it was structured and if I was physically ready for it. I think that was my big unknown. And then after the first meeting or session, I guess, all of my fears were put completely at ease. It was like, we’re gonna help you do what you can do in this way. So that was really helpful, but I was definitely curious before we started. What are we getting into here, and will I be able to do it?
Personal experiences of those who participated in LIVESTRONG resonate with survivors and increase participation.
Several participants reported being able to refer other people they knew who had cancer to the program would be helpful as it was to them.
they (LIVESTRONG) always send out at the beginning of the year, “Hey, here’s our schedule. If you know anybody with cancer” – and I have referred some people to the program.
Some survivors noted that hearing personal experiences from other survivors would be helpful in understanding what the program consisted of and how it could relate to them.
I would say that if you have all the materials and all of those things, with all the technology right now, I can forward that information to that person, because I’ve been there. Even if all those information are there, I think there is such a thing about speaking personally to that person, telling your experience, and it makes a lotta difference, right?.
Survivors notes the description of the program would be helpful when being referred:
…but it’s the specific nature of LIVESTRONG. If that is described to people, I think it has a much greater chance of success than just in general describing it as a “get back and get fit” program. The fact that it covers every single possible way that a body could move and get back and fit and that you get to try it all, that’s the Number 1 thing about that program that makes it really the success that it is or the success for me that it was.